Fīat Jūsticia Ruat Cælum (Let Justice Be Done, Though the Heavens Fall)

 

1.
On July 16, 2019, members of the Rochester (NY) and Atlantis (Denver, CO) chapters of the disability rights group ADAPT (note: at the time I was a member of the Chicago chapter) were on Capitol Hill in Washington, DC. They were frustrated and angry and exhausted. They had been focusing on passage of the Disability Integration Act (DIA), a bill intended to eliminate many forms of institutional bias.
“Institutional bias” is the term for the systemic features that lead far more people to end up in institutions like nursing facilities (NF’s), developmental centers, and intermediate care facilities for the developmentally disabled (ICF-DD’s) than would be there if people who qualify for institutional placement had no restrictions on choosing to live in their own homes or community-based facilities instead. Most people want to live at home, but an enormous number of them end up in institutional settings anyway, steered there by a system that makes institutional car a likely outcome of restricted choices.
The DIA strategists had set a goal of securing passage through the House by July 26, the 29th anniversary of President George H.W. Bush signing the Americans with Disabilities Act into law. However, it looked as if they would not meet it despite their having completed what they had understood had been the tasks the Democratic leadership had told them would trigger a vote. They were hung up on a hearing. Representative Frank Pallone, the Chairman of the House Energy & Commerce Committee, had to be convinced to schedule one, and he didn’t want to. That day, the ADAPTers were trying to get their hearing.
One of the activists there was Bruce Darling from Rochester, the Executive Director of that city’s Center for Disability Rights (CDR) and the Board President of the National Council on Independent Living (NCIL). Darling is a long-time and highly visible ADAPT organizer. Another was Dawn Russell, also a very experienced and well-known leader, from Denver. Also present was Dara Baldwin, a D.C.-based disability leader who works for CDR and has played a key role in coordinating the disability community’s efforts on passing the DIA. As is ADAPT’s custom, activists posted a livestream on the National ADAPT Facebook page and an audience watched from home.
While the group was in Representative Eshoo’s office, Darling made statements that attracted attention. About 14 minutes into the video, he said, “Our talking point is, ‘Democrats care more about people who are not legally in this country than their own citizens who are disabled.’ It really is what the message is here. That basically [pointing to different disabled activists] you and you and you and you, you are less than. You are not worthy. We are more concerned about immigrants who happened to come here in a non-legal manner than we are with our own citizens, and we will lock disabled people up. This is going to be the message from the dais at the [NCIL] conference. This is not what Democrats want. It’s not what we want.” Viewers in the disability community began to contact their friends. “Are you watching ADAPT? Did you see what Bruce said?” The group was gone from Eshoo’s office by the time I was alerted to the video, and several of my friends and I discussed what to do. Eventually, I tweeted. I may have been the first to do so or I may have just been the first to be seen by people whose retweets were widely read. I said that Darling had “suggest[ed] that disabled people with and without citizenship are in a competition for justice” and that he was “speaking on my behalf without my consent.” I denied that he – or anyone – had the authority to say that in my name.
Then came more bad news. “Have you seen the other one?” After leaving Representative Eshoo’s office, the group had gone to Representative Correa’s. Again, they posted a livestream, and again, they had an audience. In Correa’s office, about 22 minutes into the video, a staffer talking to the group said something about autism which was hard to decipher, and Russell responded by speaking directly into the camera. I have difficulty deciphering the audio track, but Russell appears to have said, “Autistic group! Hey, hey Julia Bascom, hey Alison Barkoff, hey whoever you are out there- you’re coming up again, I hope you’re watching! And whoever is guilty, make the phone call! It’s the autistic community, again. I heard it!” The Correa staffer reminded Russell that they were discussing an unconfirmed rumor and offered to try to confirm it. Russell began to discuss other things, but then returned to the topic. “Hey, Jackie [an activist from Atlantis ADAPT],” she said. “I just want to take you back to last night’s conversation. They [almost certainly a reference to the Autistic Self Advocacy Network (ASAN)] were they problem at Gottlieb’s [a reference to an ADAPT action in March, 2018, in which Russell and I participated, and in which a number of the other activists in the room had also participated], and they’re the problem here. Whoever I’m calling out, you know who you are. And the boys can’t protect you, because the DD girls are coming.”
Bascom, the Executive Director of ASAN, is autistic, as are all of the current staff and board of ASAN. Barkoff, an active proponent of disability rights, is not disabled, but has a brother who is a member of the intellectual and developmental disabilities (I/DD) community and a leader in the self-advocacy movement.
Another activist responded, “I’m not following completely but I’ll just smile and nod.”
“Well they do,” Russell continued. “They do. They do. They know who they are. Or better yet, we know who they are.” A moment later, Russell addressed ASAN, Bascom and Barkoff again. “How dare you? How dare you use the activists, and how dare you use a whole group of people with disabilities that you misrepresent? Sitting here at the most important time in our history, the most important thing, and then whether it’s true or not, to keep hearing it as the under, you know, the quiet thing that there’s this group out here, but it’s like we said to [an aide in Representative Eshoo’s office], they’re cowards. Why do people listen to cowards? So if you oppose it come out openly and say it. No, you’re cowards. And you’re screwing the community, and you’re screwing the people that you say you serve.”
A moment later she addressed the activists again. “Until we deal with them…”
“We’re going to get stopped everywhere we go,” someone else finished.
The diatribe continued for a while longer in this vein, with the staffer again pointing out that the rumor could not be confirmed and unsuccessfully attempting to persuade Russell to stop. Eventually she finished.
Many people found this video hard to understand. Bascom and Barkoff have long track records of supporting the DIA and both ASAN (where, incidentally, I am on the Board of Directors) and the Center for Public Representation (CPR), where Barkoff is Director of Advocacy, have allied with ADAPT, NCIL and CDR. Barkoff is one of the most public figures associated with attempts to pass a reauthorization of the Money Follows the Person program, a highly successful initiative based on an ADAPT idea which has enabled tens of thousands of people to leave large congregate institutions and return to community-based settings. Bascom, Barkoff, and their organizations were key players in the 2017 defeat of Republican efforts to repeal the Affordable Care Act, in which ADAPT was elevated to higher media prominence than ever before.
Response to Russell’s video was far more muted than the response to Darling’s. But many in the disability rights community found both videos distressing.

 

2.
On the morning of September 29, 1982, 12-year-old Mary Kellerman, who lived in the Chicago suburb Elk Grove, died. Her family were shocked: the seventh grader had complained of a mild illness that morning, but they had assumed that treating her at home with Extra Strength Tylenol would be enough.
Shortly afterward, Adam Janus from nearby Arlington Heights, died, too. Janus had been a postal worker. His grieving brother and sister-in-law, Stanley and Theresa Janus, followed. Paula Prince, a flight attendant, died. The next to go was Mary McFarland, who worked at Illinois Bell Phone Center. The last death was Mary Reiner. Reiner had just given birth to her youngest child.
It turned out to be the Tylenol. All 7 victims had taken Extra Strength Tylenol shortly before their deaths, and the over-the-counter medication turned out to be laced with potassium cyanide.
The police rapidly determined that the bottles, which came from different lots produced in different plants, had to have been tampered with after they got to Chicago. They concluded that the manufacturer, Johnson & Johnson, could not reasonably have prevented what happened.
(Tamper-proof packaging became standard after these deaths, and a series of copycat crimes. But in 1982, nobody expected Tylenol to come in tamper-proof packaging.)

 

By October 5, 1982, the Chicago area was panicked. It was all over the news. Ambulances rolled up and down the street warning people not to take Extra Strength Tylenol. There was a killer on the loose, and as scary as a killer who might kill you from behind any bush is, one who might kill you from inside an over-the-counter bottle of trusted tablets or capsules in your own medicine cabinet is worse.
People around the country were nervous too. Could the same thing happen to them? Tylenol’s market share dropped to a fraction of what it had been. Suddenly, what had seemed like a brand to trust, and one Johnson & Johnson depended on – the previous year 17% of the company’s net profits had come from the sale of Tylenol – was associated with a terrible outcome. The brand looked like it might be another casualty of the killer, and the company, experts predicted, might never recover.
Then Johnson & Johnson recalled 31,000 bottles of Extra Strength Tylenol capsules and provided free replacement with tablets, which were safer. Within 2 months they had a relaunch, this time with tamper-proof packaging. And they rolled out a media campaign to make sure people knew. Throughout it all, Johnson & Johnson’s chairman, James Burke, was presented as honest and open and publicly available to keep people updated on the risk and how the company was handling it. People’s anxieties were calmed. It may have cost more than $100 million (the equivalent of over $265 million today), but it paid off. The company not only recovered, it recovered fast. And Tylenol remains a trusted name in over-the-counter pain medication today.

 

Although the Chicago Tylenol Murders case was never solved, and although it is exactly the sort of mystery that worms its way into people’s attention, that’s not what people today are most likely to be discussing when they bring it up. Johnson & Johnson’s crisis management is taught in business schools as an example of leadership. The company presented itself as capable and caring, reliable, taking charge and protecting lives. They spent enormous sums of money they weren’t going to recover, and did it quickly and, as far as anyone could see they did it without hesitation. Why not spend $100 million dollars? Seven people had died and the carnage had to be stopped.
But it’s worth noting that all of those actions, while they may have been in the public’s best interest, were in someone else’s, too: the shareholders’. And as much as we may like to tell ourselves that the purpose of Extra Strength Tylenol is to soothe our bodies and bring down our fevers, its real purpose in a capitalist system is to funnel wealth to shareholders. When the Extra Strength Tylenol brand is associated with capability and caring, with reliability, with coming into a situation where we are not at ease and setting it right, consumers are more likely to buy it – and a portion of what we spend duly makes its way to the shareholders. If we thought of it as dangerous, we’d spend our over-the-counter pain relief budget on Motrin or Aleve – or if we thought of Tylenol, Motrin and Aleve as all pretty much the same thing, we’d stop buying much of any of it. The $100 million wasn’t money spent and never recovered; it wasn’t “lost”; it was money invested. The return on that investment was consumer confidence, and that confidence transferred into shareholder payouts that wavered and bounced back, instead of dwindling away.

 

 

3.
Following the Darling/Russell Videos, the community surrounding the independent living submovement of the disability rights movement (from which both ADAPT and NCIL arose) was immersed in the leadership crisis. (ASAN emerged from the neurodiversity submovement, and Barkoff has ties to a number of the submovements.) NCIL was about to hold its annual conference the following week; the ADAPT biennial strategy meeting was the weekend after that. (I can’t speak to CDR. Although it has national influence, it is a local organization, and I don’t move in the right circles to know what is happening.) What needed to happen, both immediately and in the longer term, was hotly debated.
Factions emerged.
Some people thought one or both activists did nothing wrong. Some thought they were wrong, but not that wrong, or wrong but not horribly out of line with things that are routinely tolerated. Some thought they (and especially Darling, who has faced worse public consequences) were being “scapegoated.” Some thought others were providing “cover” for them and they deserved worse censure. Some did not understand the Russell video.
Some thought the videos showed isolated and uncharacteristic statements, and some thought one or both activists and/or the organizations they represented had engaged in a long-standing pattern of problematic behavior which was suddenly being scrutinized. Some thought that it was “only” undocumented immigrants and autistics who had been attacked, so why make such a big deal about it?
The organizations worked privately on crisis management and damage control.

 

 

4.
After World War II, entrepreneur Earl Tupper was having a hard time getting the raw materials he was looking for. This cut into his manufacturing and his profits. So he started trying to figure out what he could make out of what he could get, and he began playing around with a waste product called polyethylene.
Polyethylene was deeply unattractive in the form it was in when Tupper first started experimenting with it, but with the right combination of heat, pressure, and dyes, it could be used to create far more attractive, as well as food-safe, containers that fit right in on many American tables.
Not only that, but the new bowls were a significant improvement over the plastic food containers that had been available to American housewives up until that point. They were sturdier, and they came with lids that could create an airtight seal. That seal was so good that it would hold even if you threw the container across the room or bounced it off the floor – not a drop of the contents would be spilled.
If you had been storing your leftovers on china plates or in china bowls covered by plastic shower caps, the new “Poly-T” containers were a huge step forward. Food stayed fresher and was better protected. The bowls looked good on the table. But it’s not always enough to have a great product line, and Tupperware was not flying off the department store shelves.
Where it was being sold was in private homes, where experienced direct-home salespeople were able to demonstrate the product’s strengths to groups of potential customers, then place orders on those customers’ behalf with the distributors who recruited, trained, and managed them. In a meeting on April 2, 1951, a determined group of those distributors convinced Tupper to take a chance on a daring marketing plan.
Tupperware would be sold exclusively through their Home Parties division, and Brownie Wise, a savvy distributor who had built a strong record, first in Michigan and then in Florida, would run it.

 

 

Tupperware parties had an art to them. A housewife would “book” a party in her home, invite her friends, and function as hostess in exchange for a share of any sales made. The dealer would demonstrate the product line and use it as the basis of games. The dealer received free samples in direct proportion to sales made, and used those samples to provide gifts and prizes in the games. And at the end of the evening, the order books came out.
Guests new to Tupperware might buy something in response to the real advantages Tupperware offered over products they already used. But even as their kitchen cabinets filled up and copycat products became available, and even as the lids turned from hot new innovation to source of frustration (if you stored Tupperware with the lids on it took up a ridiculous amount of space, but if you stored it with the lids off, you had to search your collection of loose lids for the right one every time you wanted to pop some new leftovers in the fridge), many people kept buying Tupperware they knew they did not want or need. Tupperware parties could be that strong an influence on people’s willingness to buy the product.

 

 

5.
In his role as NCIL Board President, Bruce Darling quickly issued a public apology.
Darling’s apology acknowledged that what he had said had not been an official talking point. He made no excuses for what he had done and acknowledged the harm he had inflicted on ADAPT and NCIL, two organizations to which he has dedicated much of his professional life. He said, “I appreciate those that have held me accountable and helped educate me. I will strive to do better… and will work to end institutional confinement in all its forms and advance justice.”
The videos had been released in the morning of July 16. By the end of July 17, NCIL’s blog, the Advocacy Monitor, had published both Darling’s apology and the news that they had accepted their President’s resignation. An election had already been scheduled a week later during the conference; until the election was held, the Vice President, Sarah Launderville, would act as President. The organization would also hold a “listening session” at the conference.
ADAPT, with a less structured leadership system and far fewer formal processes, took longer to begin issuing statements. Like NCIL, the organization clarified that its values did not permit pitting one oppressed minority against another. It pointed the public to an established structure within the group, the Intersectional Justice Workgroup (IJ), which is led by and includes a number of deeply respected multiply marginalized ADAPTers. IJ had been established the previous year and had been working to address patterns of injustice within ADAPT. Now IJ took the primary responsibility for calling Darling in and helping him to do better.
To my knowledge, it has never been clarified whether IJ also worked with Russell. IJ had been created with leadership that cared deeply about the issue of lateral ablism. Even so, that had been a role many felt higher-level leadership had prevented it from taking on. Meanwhile while they had a huge job they were tackling hard. At least some of us who wanted the ablism issue addressed had sought a structure separate from IJ.
Darling’s ADAPT apology was similar to the one he had written for NCIL. It went further in some key respects. Where he had indicated his previous opposition to “oppression olympics [sic],” he now stressed that his controversial remarks were “out of character.” Where before he had pledged to do better, he now clarified at least some of what that would look like, including anti-racism training with the disability justice group Sins Invalid. And where he had promised to work toward a better future, he gave some indication of what that would look like, including advocating for one day of the next ADAPT National Action, a 4-day event held twice a year, to be dedicated to anti-racism training. ADAPT National Actions are traditionally planned by a small team of Day Leaders, roughly 13 at the present time. Darling is a long-time National Action Day Leader. The apology came very close to asserting that he would remain in that role. Apparently he did not intend to step down from a top leadership role as he had from his role at NCIL.
Russell did not issue a public apology. I am unaware of any private apologies or efforts at repairing ADAPT’s relationships with ASAN and CPR, which she had damaged. She has not responded to my efforts to contact her. A group of ADAPT chapters (including mine, and to be transparent, I am one of the people who participated in this discussion on my chapter’s behalf) issued a statement decrying recent changes in the balance of leadership and power within ADAPT. They indicated their intent to return to an earlier structure of decision-making – one that did not, commentators noted, have any Workgroups at all, and no formal structure to promote intersectionality. It was unclear from the statement whether activists envisioned dropping the Intersectional work or making at least some adjustments to the earlier model (which had been abandoned before I joined ADAPT).
IJ released a statement highlighting its work, both with ADAPT as a whole and Darling as an individual, and asking to be able to continue it.

 

 

6.
Sometime in the 1970’s social psychologist Robert Cialdini had wanted to study how people convince other people to do things, and he effectively went undercover, entering a series of training programs for people whose jobs require them to do things – marketers, salesmen, and so on – to learn their secrets. He then returned to his scientific research to evaluate and explore what he had been told. He reported his results in a 1984 bestseller, now available in its 4th edition, Influence: The Power of Persuasion, and another popular book, Pre-Suasion: A Revolutionary Way to Influence and Persuade. Now in his 70’s, Cialdini has retired from his professorship at Arizona State University and has a business selling his knowledge back to the intellectual heirs of the people whose student he once was.
Cialdini’s work on influence, on methods that are effective in getting people to do things you want them to do, has resulted in what he calls 7 universal principles: reciprocity, scarcity, authority, consistency, liking and consensus, which he discussed in Influence, and unity, which he added to the list in Pre-Suasion.
These principles enlighten us as to why people continued to buy Tupperware long after “the Tupperware lid cabinet” had become a source of frustration. They weren’t being invited to these parties by the professional demonstrator, but by a neighbour, someone they knew and liked. By the time orders were placed, they had played games and gotten prizes and gifts the demonstrator used to “prime the pump” and they felt that sense of wanting to give back, or reciprocity. They probably felt reciprocity to the hostess as well. After all, she had set up the lively gathering and served refreshments. And she was getting a share of any orders placed that night, so buying something was helping her out. All the women around them were buying Tupperware – that’s what one did at a Tupperware party! – so the apparent consensus was that buying it was the right thing to do. Finally, Tupperware was a good product. It really was. And one of the reasons the women at the party knew it was a good product was that they had bought it before. They used it every day. They were highly skilled at the art of running homes, which was not easy, and they did it affordably, reliably, and while juggling other responsibilities. If Tupperware wasn’t a good product they wouldn’t already have so much. Their choices at the parties were consistent with their earlier choices because they believed their earlier choices were sound.
These forces Cialdini identified and that Brownie Wise, who built Tupperware’s Home Sales division, utilized, are powerful. They work on us – even when we are aware of them – and they have many beneficial effects, permitting us to make fairly reliably good decisions without having to stop and think every situation through carefully. We have a lot of information to sift through; we cannot process it all. But the same principles can, in the hands of a skilled enough influencer, be used to get us to do things we will later regret. Cialdini’s Influence is written as a sort of Defense Against the Dark Arts text, helping people understand both the benign and the malign uses of influence, and avoid being shoved into things they don’t want to do by the latter.

 

 

Grassroots organizing is all about influence. Obviously, it is an attempt to influence the people with the power to fix injustices, to go ahead and fix them. But it also involves a great deal of cooperation from activists, allies, media, supporters, and potential recruits, as well as decisions about issues, goals, strategies and tactics. A group like ADAPT runs on the skill of its leaders to get and keep others’ cooperation using a variety of approaches. Some are deliberate and others intuitive, and some are more effective in a given moment, but without some significant ability to deploy influence, the whole thing falls apart.
Darling and Russell are two leaders who can consistently recruit, train, and turn out members when needed, and between them they have chalked up some impressive successes in persuading others to do things as well. For instance, Darling, as mentioned before, coordinates a great deal of the whole-community effort to pass the DIA, which has resulted in more than half the House of Representatives agreeing to cosponsor it (which strongly suggests those votes are locked in if it goes to the floor), and not only has Russell been one of the leaders of the effort within ADAPT (working closely with an ADAPTer who is also a CDR employee) but her team has pulled off such impressive feats as convincing Republican Colorado Senator Corey Gardner to support the bill.
The two leaders’ ability to wield influence within ADAPT, within the NCIL/ADAPT/CDR nexus, within the larger disability community, and on Capitol Hill is impressive. But it wasn’t at all clear that July morning that they had the influence to get DIA through the House in the next 10 days (as they had announced their intent to do), get it through the Republican-controlled Senate before the 2020 elections, and persuade Donald J. Trump, whose ACA repeal hopes they openly bragged about destroying, to sign it.

 

 

In the summer of 2018 I took Greyhound from Chicago to Rochester and sat down with Bruce Darling for a few hours to talk about ADAPT and about DIA tactics. It was a meeting brimming with ideas. It was a good day. I felt closer to the man than I ever had, and I felt good about that. Over the last few months, one part of the conversation has come back to me again and again.
Sometimes, Darling told me, in the midst of an action, in the shifting situation and under stress and without a clear sense of the big picture, an activist will do something they really shouldn’t have done. And when that happens, the other ADAPTers back them up. He told me a story of a time when all the Day Leaders – the experienced leaders who plan and run the action – were meeting across the street from their target, getting ready to issue their demands, when they saw one of their number talking to people at the site. By the time they got to him, he had negotiated a deal – not the one they wanted, but a deal. So they embraced it and celebrated and moved on.
The benefits of a “Heat of the Moment” norm like that are obvious. ADAPTers are often operating in chaotic situations, with imperfect information, and having to make decisions fast. Sometimes, in retrospect, a decision may seem unwise or a better one may become apparent. A norm that protects people from significant negative consequences for good-faith decisions the group needed them to make but later regrets makes leadership less emotionally fraught and keeps the group from fragmenting.
But it can be abused. A leader who goes beyond the popular “It is better to ask forgiveness than permission” maxim in recognition of a reality that it is hard to get permission – and the murky leadership structure of ADAPT can make seeking permission a very challenging prospect – and unnecessary to even ask for forgiveness, can do almost anything as long as they take care to maintain the factors that encourage compliance with the norm – things like
• likeability: both Darling and Russell can be extremely charming, and it makes people more likely to cooperate with them,
• authority: both Darling and Russell have decades of ADAPT experience and both are clearly looked to as reliable sources about how things are done, which lets unsure members choose them to look to for guidance,
• reciprocity: ADAPT members are expected to look out for each other, and Darling and Russell have likely at one time or another had most long-time members’ backs. This creates an urge in those members to have Darling’s and Russell’s backs too,
• consensus: anyone looking around will see that others are prepared to follow where leaders like Darling and Russell go, and this reassures uncertain members that it’s the right way to handle things,
• consistency: many ADAPTers, consciously or unconsciously, have complied with the norm before; having gone along with something they were hesitant about, they will have concluded that they made the right choice. People tend to believe that they have made good choices because they tend to believe they are the sort of people who make good choices. And having made good choices in previous situations, they are likely to make similar choices when the opportunity presents itself in the future, and
• unity: people tend especially to align themselves with people they closely identify with, who remind them of themselves. ADAPT members tend to strongly identify with each other: ADAPT is the largest disability group engaging in civil disobedience, and ADAPTers often find a way to “fit in” in the group that they may not elsewhere.

 

 

Unlike NCIL, ADAPT does not have a formal leadership structure or a clear set of established procedures. There are structures for conveying decisions and information through the ranks at large events; some chapters have specific ways of handling things. But a great deal of what happens is informal, mediated through norms that few can clearly articulate but that most of the group follows. Consequently, power accrues not to those people whose colleagues choose them to wield it, but to those people who are best able to wield informal influence – instinctively or consciously – over those same colleagues.
Another key feature of ADAPT is personal loyalty to one another. Again, this is in many ways a highly functional norm: bringing 150 or so activists from across the country – activists who are comfortable enough denying authority to repeatedly commit civil disobedience – twice a year and get them to move as one requires members to set aside their differences and stick together.
But that norm makes it very difficult to criticize, let alone challenge, people like Bruce Darling and Dawn Russell when they cross a line – especially if non-ADAPTers are already criticizing them, the almost instinctive reaction is to defend them.

 

 

7.
In 2017, as the Republicans were trying to repeal the ACA, ADAPT mobilized, as did so many other sections of the disability rights community. The situation looked dire. If the Republicans got their way, all kinds of people – due to the institutional bias in the system – would lose access to the waiver services that keep them from being forced into unwanted institutionalization. Waivers are optional services. This means that states do not have to provide them to the people who do have to be offered institutional placement, although they are less expensive and more desirable. They could easily be lost in belt-tightening. If the Republicans got their way, all kinds of people would lose access, or never gain newly needed access, to health care they needed to stay alive or to maintain a basic quality of life. If the Republicans had gotten their way, the disability community would be devastated.
In 2017 the disability community – including Darling and Bascom and Barkoff and Russell – was unified to a greater extent than I have ever seen. We understood the same dire threats to people’s lives and though we fought back using different tactics, we fought back in a coordinated way. ASAN, CPR, NCIL, ADAPT, and CDR were allies.
The rhythm of ADAPT actions increased. They popped up in places that hadn’t seen much ADAPT work, and people traveled to Washington, D.C. more often. More activists were injured. People pushed themselves to the limit. Bank accounts drained. But it was an emergency, and those pictures of activists being dragged out, still chanting, in wheelchairs, holding white canes, doing what ADAPT does uniquely, had an effect.
And then it was over.
We were keeping our eye on the Republicans and their desire to destroy the ACA, but we went back to the old pattern of each working on different things, according to our constituencies’ interests. For Darling and, at least by a certain point, Russell, this appeared to be the DIA. Much of ADAPT appeared to follow suit.
This gave rise to three sets of complaints about the DIA strategy:
• It was too exclusive in focus, essentially defining anyone who worked on other issues instead of or in addition to as inadequately committed to disability rights,
• It was too exclusive of activists. The DIA strategy required a level of commitment of time, energy, and financial resources that many impoverished and disabled activists could not meet, and as they dropped out because they had given all they could, they were accused of inadequate commitment to disability rights. Further, the tactics simply are not equally safe for all people. (Imagine how different the response to the ACA protesters would have been if, instead of the photos being primarily of white people with easily-recognised assistive technology, they had been of young black men who don’t understand spoken language and who walk with difficulty.) Thus the tactics themselves serve as a barrier to an activist corps that reflects the full diversity of the disability community, and
• The tactics – especially direct action protest and giving Capitol Hill staffers’ names and direct email addresses to large numbers of people, including non-constituents, to have them contact staffers with requests and demands rather than having constituents go through the lines established for the purpose – were “too alienating.”
The ADAPTers and others leading on DIA obviously disagreed. They kept going.
The ties holding the disability coalition together began to fray.

 

 

8.
All my training in media activism, back in the days before social media when we were dependent on reporters to get the word out, hammered home one point: it is your job to make it as easy as possible for the media to tell the story we want told, and as hard as possible for them to tell any other story about us.
To that end, we scheduled events that were at convenient times for TV crews to film us and get their stories onto broadcasts; we wrote press releases that were as much like published news stories as we could make them, with the key facts in the lede (the first sentence or paragraph) and the main text written in a straight and “balanced” way, our own positions expressed in the quotes; we thought through the theatre of the event and how text descriptions, still photography and video would convey what we wanted; we made sure our releases were no more than 1 page long so that they would come out of the fax machine whole, and we studied message discipline, or the art of not getting diverted into giving a quote that might serve some alternate interpretation better.
“But some accommodations are very expensive, aren’t they?” a “reporter” might role play with us as if they really wanted to write a story about how hard ADA compliance is on public accommodations.
We would resist the urge to do more than pretend to give her the answer she wanted: “The cost of excluding some members of our society over and over is intolerable. It’s a cost paid in human potential and human lives. There is nothing more valuable than that!” Times have changed – and yet they haven’t. Nobody is working the fax machines any more, and suddenly the media are everywhere because we are our own media. But we still need to make sure that what the audience are seeing is what we intend them to see.
And to do that, we need to understand other people’s perspectives and how to address them.

 

 

The theatre of direct action follows a similar logic. Each photo, each video, that goes out should ideally make it clear what the injustice being done is, and the challenge to that injustice as clear as possible. This begins with what is known as “cutting the issue” – distilling it down into a simple and concrete form – and carries through with all the tactical decisions and the prep work that activists do. The messaging should be on point, whether it is conveyed through signs, chants, speakers or something else.
It should be as easy as possible for anyone who witnesses it to understand the struggle against injustice as the activist group wants it understood and as hard as possible for them to understand it in any other way.

 

 

9.
While there is certainly room for honest disagreement over strategy and tactics, it is worth noting that some of the disagreements over DIA prioritization and strategy have been causing increased friction between those organizations pushing it hard – CDR, ADAPT, and NCIL, the groups where Darling had a major formal or informal leadership role – and others in the community.
On July 20, 2018, for instance, Darling tweeted, “Literally NOTHING in our advocacy interferes in [a pro-institution advocate’s] sisters being where they want.” A number of self-advocates with intellectual and developmental disabilities took issue with this. The sisters in question are almost certainly under substituted judgment. They either have guardians making their decisions on their behalf, or they have not received self-advocacy support to transition effectively from childhood, when family or professionals make the decisions, to adult self-determination. And of course children are automatically under substituted judgment. This is simply the situation many people in the I/DD system face.
While some families work hard to nurture self-determination and to use substituted judgment to help enforce what their loved ones want, in other cases, people may actively want and struggle to move to the community while, because the real decision-makers disagree with them, legally they are “expressing” their “desire” to remain in institutions.
That “literally nothing” in ADAPT’s advocacy will protect a significant number of people with intellectual and developmental disabilities from being forced into institutions comes as no surprise to many of those people; that a man perceived by non-ADAPTers as one of ADAPT’s top leaders – if not the top leader – could say so in public while insisting that that advocacy not be expanded, and not trigger a response by the rest of the leadership, was a blow. It suggested that ADAPT was making no effort to free this group of institutionalized disabled people because it did not care about them rather than because there was a plan in place that simply hadn’t been unveiled yet.
ADAPT – and the IL movement in general from which it was born – is frequently criticized for staying too true to its original core constituency, people with spinal cord injuries, neuromuscular disorders, and cerebral palsy in that order, and the message that the group does not care about people with cognitive disabilities hit home.
It weakened cross-disability unity. It also helps explain why organizations like CPR and ASAN have advocacy programs that diverge from the Darling-led groups’: they take for granted that all people with intellectual and developmental disabilities are part of the disability rights constituency, whether or not CDR, ADAPT, or NCIL agree.

 

 

10.
Why do any of us work in disability rights? For many of us, it starts with a desire to make things better for ourselves – politically or perhaps vocationally, given the dearth of accessible employment in the mainstream. Some may slide in out of an interest in policy or organizing. We may evolve to a desire to make life better for a group of our people, or all of them. We may eventually arrive at a desire to make things better for those coming up behind us. There are other paths.
Bruce Darling and Dawn Russell, as ADAPTers, routinely recommit to the informal ADAPT mission statement: free our people! Our people are to be freed by liberating them from unwanted institutionalization in nursing homes and, perhaps, other institutional settings and by delivering them to lives in the community if that is what they want. The people to be freed are at a minimum people with physical disabilities, and may include all institutionalized people with disabilities. Even without precise unanimity on what it means, though, free our people! is an effective clarifying mission statement and rallying cry for ADAPTers, and it seems clear that, just as the mission of Johnson & Johnson as it faced the Tylenol Murders crisis was to funnel wealth to shareholders, the mission of ADAPT as it faces the Darling/Russell Videos crisis is to liberate disabled people from unwanted institutionalization and dismantle the system that gives rise to unwanted institutionalization in the first place.

 

 

Katie Beckett was a beautiful baby. I’m not telling you much here: all babies are beautiful. She was born on March 9, 1978. At her birth, to the best of my knowledge, she was not disabled, but when she was 4 months old she came down with viral encephalitis. Katie and her family entered the world of disability.
Katie survived her illness, but afterward she needed a ventilator. She was still a beautiful baby, growing up into a beautiful little girl. She was still loved and cherished. And her parents wanted to take her home and raise her, as any little girl – any child – deserves. But she was trapped in the hospital. It’s not that she needed the hospital; in 1978 ventilator care could absolutely be performed safely in the community. In fact, it would have been less expensive to provide the care at home where little Katie deserved to be.
But the funds for her care were available to her only as long as she stayed in the hospital. Her parents could not afford to bring her home. And so Katie Beckett began to grow up in a hospital. A hospital is a great place to be if you actually need the specialized care they offer. It’s also no place for a child to grow up.
Katie’s family fought back. They fought back hard. This was their beloved daughter; she deserved the kind of childhood they were trying to provide her, but she was not going to get it because of the funding system for people with enormous medical expenses that people with good salaries and good private insurance could not possibly pay.
President Ronald Reagan finally stepped in when Katie was three. He spoke about the case at a November 10, 1981, press conference and the next day the Secretary of Health and Human Services waived the requirement that Katie stay in the hospital in order to get the care she needed to survive. A week before Christmas, Katie Beckett finally came home. Those three years, some of the most important years in a child’s life, were gone forever, just as the time anyone spends confined unnecessarily to an institutional setting is irrevocably lost. But there was still time to give Katie much of a normal childhood. And she thrived. By the time Beckett died (at age 34, of an unrelated illness) she had a degree in English and creative writing, had worked competitively, and had applied to graduate school.

 

 

Hundreds of thousands have families have since benefited from Katie Beckett’s parents’ advocacy, raising their kids at home using what are known as Katie Beckett waivers.
But we are still institutionalizing children today. Moreover, as our children graduate or age out of the K-12 (primary and secondary) educational system, they are launched into a world in which adults are institutionalized. Some get their support needs met in the community, in ways that promote self-determination – what the independent living movement calls “independent living” or living without undue external controls. Many, especially those with poor self-advocacy skills or who are believed (rightly or wrongly) to have intellectual disabilities or so-called “severe mental illness” or have unmet communication support needs, have no access to this brand of “independent living.” The promise of freedom the Beckett family secured for our children in 1981 has not yet been realised.

 

 

I hold in my mind a list of names of children and young adults. I know at least pieces of their stories. One is fighting for access to the regular classroom; another has a part-time job at a center for independent living (CIL); a third has just learned to make panini; a fourth is working on a system of alternative and argumentative communication that fits. They are activists and artists, dreamers and lovers, beautiful and cherished children and young adults shining with promise, and what we adults are delivering to them is not a world that will support them well in expressing that promise.
But that is our job as a movement. It is to prepare a world in which our children and young adults, including those with high support needs and those who today are multiply marginalized, take their inclusion in society and the recognition of their full humanity and equality so for granted that they can be careless with them. We are, in short, trying to raise ingrates who have no conception of the lives we today are subjected to and the labor we have invested.
But we are not raising ingrates. We are raising children who can see what’s on the horizon – or what is already in their lives – and are afraid. We are raising a generation who, many with nondisabled parents who are less than 22 years into an understanding of the political realities of disability, are watching us as we work to ensure that they are offered the best futures we can possibly give them.
Whether or not we are conscious of it, the way we conduct the movement is also media work. We need to be making it as easy as possible for these children to absorb the message, you matter. We need to make it as hard as we can for them to internalize a different understanding of their own value. We need to show them that we believe in them, that we love them, that we are doing our best for them, that even when we fail to give them everything they deserve, it wasn’t because they didn’t deserve it enough or because we didn’t care enough to try. We need to ensure that we are doing that for all of our community’s children, including the ones in the camps at the southern border and the ones whose parents are picked up in ICE raids, and including the ones who have already been classified as needing to be controlled rather than as needing supports for self-determination and who are subject to increasingly coercive “therapies.”
And today those of our children who are watching are seeing efforts to advance one minority group at the expense of another – erasing people in the intersection of the two – and to tear apart cross-disability coalitions – erasing multiply disabled people. Is this the best we can do for them? When I run through my list of young people and ask myself how various decisions we make will affect each of them, I hope that it is not.
I have a fantasy of a horde of disabled children boarding school buses, joining their neighbors in groups along the neighborhood streets, being dropped off at school by parents and trusted support professionals, wearing T-shirts with a very diverse group of disabled people drawn on the front and “Disabled adults have my back” boldly printed across their shoulders. 2019 will not be the year that t-shirts like that will fly off the shelves.

 

 

ADAPT members routinely commit civil disobedience, violating the law in order to resist or to call attention to what they consider injustice committed by powerful people. Civil disobedience promotes a very moralistic mindset: it is about the theatrical exploration of good and evil, and about finding power to resist evil, paradoxically, by strategic powerlessness, by highlighting the fact that the power is in the hands of people who misuse it. One of the first rules of civil disobedience is actions have consequences and this rule is applied in a number of ways.
For one thing, the targets, whom protesters are identifying as wrongdoers, are facing consequences in the form of the condemnation of those they oppress. For another, civil disobedients accept arrest, pay fines, risk incarceration, and live with other consequences of their choice to defy the authorities in the name of conscience. Much of the public debate about the videos, and particularly the video of Darling in Representative Eshoo’s office, centered on appropriate consequences. People attempted to balance the scales of justice. How bad was what he said? Has he done other bad things? How much are his wrongs offset by his contribution to the organizations and the movement of which he was a part? Would the same behavior have been tolerated in a different figure? (Here it is worth noting the contrasts with Dawn Russell. How similar or different were their two actions? How very different are the consequences they appear to be facing?) It also focused on ADAPT, whose struggles with patterns of oppression are being discussed openly. How bad are those? And what should happen as a result?
The moralistic response, however, is not the only one available. It’s the usual one, as we often see when organizations are called out. But few people, if anyone, thought in 1982 that Johnson & Johnson deserved to take a $100 million hit. The tainted bottles were from different lots, manufactured in different plants, and all 7 deaths were in the Chicago area, although they had been sold by different stores. It made the most sense to believe the killer had put the cyanide into the bottles and taken them to different stores, leaving them on shelves to be sold. The costs Johnson & Johnson incurred had nothing to do with actions having consequences and everything to do with a savvy understanding of its real goal, funneling money to shareholders, and how to achieve it.
As ADAPTers, Bruce Darling and Dawn Russell had embraced the overarching goal of free our people!, and the more immediate goal of pass the DIA. Instead of discussing what they deserve, the disability community could have asked how best to advance those purposes. NCIL may have done this; they moved faster than is usually possible when weighing someone’s soul and convincing them to accept the judgment. Someone may have said, “For the good of the movement, Bruce, step down,” instead of “Bruce, you’ve got to be a better person.” But that is speculation.

 

 

11.
On June 6-7, 2018, activists were working against the confirmation to the Supreme Court of Judge Brett Kavanaugh. They were doing so for many reasons, but advocates for people with intellectual disabilities – actual or presumed – had an additional concern. Kavanaugh had written a decision (later overturned) in a lower court case known as Doe ex. rel. Tarlow v. District of Columbia. The decision indicated that people with intellectual and developmental disabilities and those with significant unmet communication support needs (and their guardians, if they have them) do not even need to be given a chance to express their opinions before professionals force them to undergo elective procedures – like abortion.
This kind of thinking is dangerous. It threatens to strip a group of people, many of them institutionalized under formal or informal substituted judgment, many of them multiply marginalized and denied necessary supports, of any self-determination, including sexual self-determination, in the face of professional control. More than that, quiet recourse to forced abortion is one way that institutions cover up evidence of rape.
Covering up rape of institutionalized disabled people with little or no recourse to reporting may not be what Judge Kavanaugh intended. But it certainly seemed to some ADAPTers to be a free our people! issue. Darling disagreed.
In response to calls to oppose Kavanaugh, Darling tweeted, “…[W]e are busy trying to convince 24 Democratic Senators and 99 Democrats in the House that Disabled Americans shouldn’t be locked up in institutions…. Being locked up for being ‘too disabled’ is a more imminent threat….” Although ADAPTers have rarely challenged or disagreed with Darling in public, in this case an activist from a different ADAPT chapter attempted to convey her concerns: “In 2007 #Kavanaugh wrote a decision affirming a lower court’s decision that giving nonconsensual surgery to women with intellectual disabilities was totally fine. Two of the three women in the case were given abortions they did not want and were not asked about. Not getting involved in the Kavanaugh hearings felt like another instance of @NationalADAPT not showing up for people with cognitive disabilities. People from my local chapter did things independently. Some with other groups. Some got arrested. But God, it would have been great if national had come out. DIA isn’t the only issue there is.”
Darling accused her of “trolling ADAPT.”
“And for 28 years I have heard disabled folks who aren’t facing institutionalization,” Darling said, “tell @NationalADAPT that there are other important issues to work on and our focus was misguided. It’s perspective. People denied their freedom in institutions arent [sic] thinking about #Kavanaugh.”
The activist challenging Darling in this exchange – and several others challenging him in less visible forums – is a survivor of institutionalization at risk of return. Moreover, while it is true that uneducated, institutionalized, sexually abused women under guardianship without access to basic communication and self-advocacy supports are not contemplating who should be the next Supreme Court Justice, they also are not rooting for specific legislation.
Liz Weintraub, a self-advocate and policy specialist with an intellectual disability who is a survivor of institutionalization and at risk of returning, ended up testifying to the Senate Judiciary Committee about the centrality of access to self-determination and to having people with intellectual and developmental disabilities at the table when decisions are made about our lives. Kavanaugh was confirmed to a lifetime appointment.

 

12.
In 2019, work on the DIA has been a constant drumbeat. Dara Baldwin, a D.C. policy analyst, became part of the public face of CDR’s DIA team. Bruce Darling, Dawn Russell, Baldwin, and other organizers, many of them at the intersection of the Darling-led organizations, CDR, ADAPT, and NCIL, regularly circulated lists of Members of the House of Representatives whose Committee memberships or party affiliation made them desirable to secure as cosponsors. One after another, names were crossed off these lists.
Connections with and contrasts to other movements became the theme of much of the organizing. The bill was reintroduced on Dr. Martin Luther King’s birthday; there were efforts to promote it at the anniversary of the Stonewall Riots and on Juneteenth; and when the Equality Act was passed, Darling noted to lawmakers that as a gay, disabled man, he still didn’t have the meaningful protections the Equality Act was meant to offer him.
Even Money Follows the Person (MFP), the long-time ADAPT priority mentioned above, one of whose most public faces by then was CPR’s Alison Barkoff, was derided as a distraction from the real goals of the disability rights community. MFP is a successful program which has seen nearly 100,000 people successfully transition from large institutions to community-based care. MFP is almost universally loved. It provides better outcomes for participants at lower cost to states. But the program ended. Congress has been dribbling funds into it to keep it from dying, but what it needs is a multi-year reauthorization with full funding. States like Texas and Illinois, which institutionalize large numbers of people, have enormous HCBS waiting lists, and made effective use of MFP, ran out of money at the end of the last cycle, and can’t get going again without a real reauthorization.
In a June 18, 2019, press release, ADAPT said, “The Group has watched as congress [sic] has found the political will to pass other important legislation such as the Equality Act. Now they have signaled an intent to pass H.R. 3253, the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019, introduced by Reps. Debbie Dingell (D-MI) and Brett Guthrie (R-KY) last week, to fund the Money Follows the Person (MFP) and Spousal Impoverishment Protections four and half years. The MPF [sic] program provides monetary incentives to states to offer Medicaid home and community-based options in lieu of institutional and nursing facility level of care. All of this is important legislation [sic] the disability community is not getting the same priority.”
It seemed to some observers as if an ethic of “Work on nothing else but DIA” was being demanded. Julia Bascom, Alison Barkoff, and their respective organizations apparently either did not get that memo, or disregarded it. They continued to work on an array of disability rights issues, as did most of the community.
But there were also the protests, the trips to Washington DC, to go to Representatives’ offices. And whether these were the chapters that had the money to get there or the chapters that were willing to engage in those tactics on those issues, the ADAPTers in the Congressional offices ended up coming primarily from Darling’s chapter, Rochester ADAPT, and Russell’s, Atlantis ADAPT.

 

On June 20, 2019, Rochester ADAPT and Atlantis ADAPT went to the home of Representative Frank Pallone early in the morning, while most of the neighbours were probably still asleep. They were frustrated and angry and exhausted. They had believed Pallone’s support for DIA was assured but, presumably because he was listening to groups of parents and institutional staff who were concerned that institutions not be closed – the same kind of people Darling had assured the previous summer could continue to institutionalize disabled people without ADAPT interference – he was not doing what they wanted.
Specifically, Representative Pallone, the Chairman of the House Energy and Commerce Committee, was in a position to schedule a hearing DIA proponents needed, and thought they had gotten an agreement on, but a staffer had said no.
So activists went to his home before breakfast on a workday. They did not maintain a dignified vigil at a distance, which is one tactic. Instead members of the group climbed onto his porch; they went into his backyard. This is another. (Fair disclosure: I have participated, willingly, in several protests at officials’ homes.)
When pictures went out of Representative Pallone leaving, in the company of police, those pictures could be interpreted in multiple ways. It could seem that Pallone was a coward, fleeing desperate people trying to speak truth to power, as many ADAPTers saw it. But it could also seem that Pallone was being harassed by people with no sense of where the lines are drawn. The theatre of the event was, in other words, at best murky and confused. It was not impossible for the theatre of the action to convey the story Darling and Russell wanted out there. It was also very easy for it to be used to tell a much uglier story in which disabled people did not hold the moral high ground.

 

13.
On July 20, 2019, Ari Ne’eman, who is writing a book on disability rights history, had written a thread arguing that “the near exclusive focus on DIA by some advocates has been a huge liability for the [disability] community.” Ne’eman continued, “The total absence of priority given to MFP, ending subminimum wage [a program which permits some employers to pay workers with disabilities far less than minimum wage], the Keeping All Students Safe Act (which addresses restraint and seclusion of both students [with] disabilities and students of color!) in the direct action agenda is … not good.
“And certain people have been flat out lying to the grassroots that DIA – a bill with no [Congressional Budget Office] score [which would be an attempt to predict how passing the bill would affect the federal budget] and that has never had so much as a subcommittee hearing – would pass easily if not for the treachery of the Democratic leadership.”
“There are DEFINITELY people in institutions and nursing homes today,” Ne’eman asserted, “who would not be if one-half of the focus DIA has received went toward reauthorizing MFP. Beyond that, I’ve heard of offices indicating that they’re actually reluctant to introduce or join new legislation [relating to home and community-based services (HCBS), supports provided in community settings specifically to people at risk of institutionalization] for fear that they’ll be accused by ADAPT of ‘distracting from the DIA’.”
Ne’eman also discussed the historical context of ADAPT work: “The ironic thing is that ADAPT historically has been very good about being strategic about this sort of thing. ADAPT is responsible for helping get MFP established in the first place, and was crucial to getting the Community First Choice State Option in the ACA. The latter has sent hundreds of millions of dollars for HCBS and emerged because ADAPT, NCIL, and other disability [organizations] made a pragmatic decision to turn the Community Choice Act [CCA], their preferred legislation, into a state plan option to get it into the ACA.
“I was in the meeting at the Obama White House where this deal was struck,” Ne’eman recounted. “The disability advocates who crafted CCA weren’t thrilled about turning their national mandate for HCBS into a state option [with] financial incentives …. But they did it because they put actual policy outcomes – getting as many disabled people as possible out of institutions as quickly as possible – over rhetorical purity …. One of the things I always admired about the old ADAPT was the impressive combination of radical tactics and pragmatic goals.”
“Suffice it to say,” Ne’eman tweeted, “that it’s been an open secret for some time that the disability community has an ADAPT problem on Capitol Hill.”

 

When Dawn Russell sputtered into the camera that now is “the most important time in our history,” she is almost certainly asserting that passing DIA would change so much that it is worth the price Ne’eman and others have delineated. It is worth allowing the restraint and seclusion of children with disabilities and children of color – practices that are deeply traumatizing and that contribute to the School-to-Prison Pipeline and to injuries up to and including death – to continue for at least awhile longer, because we are deemphasizing the Keeping All Students Safe Act. It is worth leaving tens of thousands of people in nursing homes and other institutions whom we could have gotten out before DIA could take effect, because we aren’t pushing MFP. It is worth accepting Brett Kavanaugh on the Supreme Court rather than trying to force a different nominee who, while they might be as bad on many issues, did not explicitly believe that people with intellectual disabilities can be stripped of their right even to express their opinions about major decisions affecting them.
Darling certainly appears to believe this. He has publicly called DIA “the grail.” He, like other supporters, argues that it “ensures people with disabilities have the right to live and receive services in their own homes.”
As noted before, though, it wouldn’t have ensured that the 11 children who died when poor infection controls allowed adenovirus to sweep through a facility in Wanaque, New Jersey, in the fall of 2018, could have returned to the community, because they were children. Their parents made their decisions for them. If, in the parents’ judgment, institutionalization was a better choice than HCBS – and parents who place great value on having highly trained professionals available to their children, or who are too busy keeping a roof over their families’ heads and food on their tables to take on the full-time job of managing personal assistants, direct support professionals, as well as overseeing medical care sometimes make that choice – then the outcome will be institutionalization.
DIA wouldn’t have ensured that the indigenous woman who was repeatedly raped and impregnated at the facility in Phoenix, Arizona, could live in her home for the same reason. She has no effective complex communication system; and her family makes decisions about what is best for her.
DIA would not have protected someone like Jensen Caraballo, who was placed in a facility while in foster care. It would not protect someone like Darius McCollum, who was adjudicated to a facility by a judge who was convinced that there was no point in trying robust HCBS.
The Wanaque kids might have pulled it off when they reached adulthood, depending on the nature of their disabilities, but they were ventilator users and would almost certainly have been heavily socialized to comply with staff and other authority figures; some of them undoubtedly had cognitive as well as physical disabilities; and even those who were not automatically adjudicated incompetent would have been stripped of many basic rights and assigned guardians as they turned 18 (something many parents are told needs to happen if they are to continue to “protect” their children’s rights).
Even those who can expect to benefit can also, if they are not among the people regarded as capable of real self-determination, be forgiven for questioning how much. DIA explicitly permits 4-person group homes – small-scale but still congregate facilities with staffing patterns that serve to segregate – as options. Group homes can certainly strive to empower, but they can also be run in very repressive ways. If we are prepared to live with congregation, segregation, and repression even for some of those we are seeking to free at all, it’s not unreasonable for some people to conclude that while they support the bill as a step forward, there is a limit to the price they are willing to pay for its passage.
Moreover, DIA is a different kind of law. We can expect legal challenges to it once it is passed. With Senator McConnell having held open so many positions on the Circuit Courts during the Obama years for the next Republican President to fill, with President Trump having gotten Justices Gorsuch and Kavanaugh onto the U.S. Supreme Court for life, it is far from clear what the bill will actually mean for the people it is intended to free.

 

Responding to Ne’eman’s Twitter thread, openly disabled Congressional aide Steve Lieberman raised concerns about ADAPT’s recent tactics. Lieberman is a 10-year veteran of Capitol Hill and a student of the advocacy game. His take on tactics is vastly different than ADAPT’s.
“There’s no denying that ADAPTers played an absolutely critical role during the Summer of ACA Repeal 2 years ago. And because of that fight, the general public is now far more aware of the importance of protecting Medicaid than it ever was before,” he wrote on July 21, 2019. “ADAPT has also conducted actions aimed at ensuring the FDA at long last finalizes its ban on shock torture devices for human beings – a key human rights issue as well as a longstanding goal of the community. However, in its engagements with Capitol Hill offices recently, ADAPT has not been at its best. Yes, DIA has won cosponsors but has the disability community won friends and allies?”
Lieberman echoed much of the traditional advice about lobbying on the Hill: the etiquette, the importance of constituents, the persuasion rather than the demands. Again, there is room for legitimate disagreement, and protesters and lobbyists frequently go about things differently.
Lieberman also echoed Ne’eman about the things that were not being done, including a Senate Finance hearing on nursing home abuses that at the time he tweeted was imminent. At the time of the hearing, NCIL would be holding its annual conference, with an expected attendance of about 1,000 advocates. And yet nobody was talking about the hearing, which nursing home industry insiders were expected to attend.
But then Lieberman addressed the ADAPT action at Representative Pallone’s home. “So DIA has more than a majority of the House on as cosponsors. Great! It just needs a hearing. Who controls whether or not it gets a hearing? That would be Frank Pallone. Who do you want to persuade and not antagonize? Frank Pallone and his staff, of course! I understand ADAPT had a meeting with Pallone’s staff that went very poorly, and I understand their frustration. Here they are, having reached their goal of getting a majority of the House on as cosponsors, and they’re told by staffers that they won’t be scheduling a hearing. At this point, their beef is with the staffers, not Frank Pallone. But instead of recalibrating by, say, engaging with NJ CILs and other NJ supporters to send emails and make phone calls, ADAPT leaders make a colossal error by showing up at Pallone’s DC residence to raise hell. I have no idea how they obtained Pallone’s DC address. But that action crossed the line. There was still a chance to get a hearing at some point if an effective strategy was used. But by pissing off Pallone at his home, now he’s painted into a corner. He can’t give in now.”
But, argued Lieberman, the damage was worse than that. “I know for a fact that other members of Congress have been made aware of what ADAPT did at Pallone’s house because my boss was made aware of it. He’s not the only one. It should be concerning to all members of the disability community that when members of Congress think about our community, the first image they have right now is people shouting early in the morning at Frank Pallone’s house, crawling up his steps and trespassing on his porch. We can do better. We can do so much better than this.”

 

Others who regularly spend time on Capitol Hill are also echoing Ne’eman’s and Lieberman’s concerns. Disability advocates report that it is harder and harder to get meetings, and that to get them at all, they are needing to reassure Members of Congress and their staffs that they are not affiliated with ADAPT. Since many of them have previously lobbied for DIA, the confusion over whether they were part of ADAPT, which is the group most closely identified with DIA advocacy, is not wholly unwarranted. But to someone unfamiliar with the landscape of disability politics, confusing ADAPT with the Executive Director of a center for independent living (CIL) is actually even easier than hearing “an autism organization” is partnering with the pro-institution forces and assuming the group in question is ASAN (Russell’s error is closer to believing ADAPT is a front for the nursing home lobby).

 

14.
Criticisms that “the cross-disability movement” – an inaccurate description of the independent living (IL) submovement of the disability rights movement, since it is neither the only cross-disability submovement nor the totality of the coalition among submovements that makes up the movement as a whole – is both too white and too physically disabled are nothing new. NCIL has been a target of those criticisms; so has ADAPT. These criticisms reflect both the reality that there has been disproportionately white and “my mind is fine” leadership (with everything that flows from that) and the reality that leaders of color and those with I/DD have been diminished in memory.
Against this backdrop, a top-level leader of three IL organizations and his allies have promoted an approach to passing a single bill that a wide range of people, some within and some from outside ADAPT, have criticized as harmful to the interests of the disability community and in particular to the interests of young children facing increasingly institutional crackdowns, institutionalized rape victims, institutionalized people who have had all their rights stripped from them, and people with a meaningful chance to get out of nursing homes and other institutional facilities who have been denied that option. They have weakened the cross-disability solidarity that was one of the few unmitigated victories of the Trump era. And the bill does not address the needs of all disabled people at risk of institutionalization equally; it prioritizes the interests of those whom the IL movement has historically chosen to prioritize, and it explicitly permits ongoing congregation and segregation under the guise of “community living.”
As these leaders have insisted on an unsustainably grueling pace of direct action, more and more activists dropped out, until the group carrying those actions out was down to two chapters, under the primary direction of two leaders, with access to the funds to keep going. At that point those leaders made tragic missteps.
Darling claims his actions on July 16 were out of character; that is, at a minimum, a matter of intense dispute. Russell has not even bothered to concede that attacking and threatening allies over an unverified rumor that, if true, would not be interpreted by anyone with even a minimal familiarity with disability rights politics and I/DD as being likely about ASAN, and which even Russell explicitly acknowledged at the time might well not be true, was a mistake. The record is less clear there because it is less public, but I have certainly heard large chunks of Russell’s diatribe from both Russell and Darling before – just not in so public a setting.
They have done this in public – in Congressional offices, livestreamed, with the videos left up for weeks before there were even disclaimers. Their actions followed closely on the heels of the events at Representative Pallone’s home. In that case, other legislators, who largely identify more easily with Pallone than with those people who were lounging on his porch as the police escorted him out, will certainly not have interpreted the theatre the way ADAPTers have mostly done. And the series of incidents means there has been real damage to NCIL’s, ADAPT’s, CDR’s, DIA’s, and – because most people are not able to distinguish between disability rights groups – the entire disability community’s reputations.
The thing to ask ourselves, I believe, is what best serves the mission now?
The Darling/Russell Videos were released on July 16, 2019.
The National Council on Independent Living (NCIL) had an annual conference scheduled for July 22-25. By the time the conference began, Darling had been removed as NCIL Board President. He did not present at the conference as he had been scheduled to do. (Reportedly his lieutenant, Dara Baldwin, presented in his place on at least one occasion.) He announced that he was not even attending. (Russell reportedly did attend at least the party.)
ADAPT had one of its twice-yearly national strategy meetings scheduled for July 27-28. The roughly 30 or so ADAPTers who attend agree on the priorities for the next half year. The question in those first days was whether or not Bruce Darling and Dawn Russell would be among them. To maneuver them out in the absence of formal procedures would take skill and determination, but it seemed possible, because some ADAPTers were very angry at the suggestion that brown people at the Southern border, accused of no crime or very minor ones, some with pre-existing disabilities and many becoming disabled during these events, being institutionalized – some in conditions that make Geraldo Rivera’s Willowbrook footage seem tame – should somehow be behind white wheelchair users in a priority list for rights.
It would be almost if not completely impossible to force Darling and Russell out of national ADAPT leadership; not only do they have very public defenders, but the structure just isn’t there. The only likely way for them to stop being some of the leaders whose judgments all ADAPTers are expected to accept, whose lead all ADAPTers are expected to follow, was for them to voluntarily step back.
The same appears to be true of other roles Darling and Russell hold in the community, formally or informally: he at CDR, she at Denver’s Atlantis Community.
It has been argued that by asking, or even allowing, them to step back into the ranks of ADAPT, to take turns serving as “soldiers” in the “scrum” rather than as two of the thirty, or the thirteen, or on a given day the two most powerful ADAPT leaders, is to “leave them behind.” But the amount of power that has been conferred upon these two is no-one’s right. Most ADAPTers never achieve the level of power Russell and especially Darling have been wielding. Certainly if one looks at the role the two have played as architects of DIA strategy, the power they have held over the disability rights agenda as a whole, what is and is not on the table, who does and does not get a seat at the table, to the detriment of other community members, is not a right. It is a strange understanding of “leaving people behind” if it matters more that powerful leaders retain their power than that children not be restrained and secluded, that institutionalized women not be forced into unwanted elective surgeries like abortions, or that tens of thousands of institutionalized people not be left without a way we know we can get them out.
Similarly, it has been argued that a commitment to restorative justice requires us not to even ask that Darling and Russell step back. First, only Darling appears to have committed to any process resembling restorative justice; Russell has demonstrated no awareness that tearing apart hard-won alliances as a Member of Congress’s staffer begs her to stop is even mildly problematic. But even Darling, who has worked with IJ and has committed to a process with Sins Invalid, has harmed vastly more people than the members of those two groups – and restorative justice cannot be demanded as an entitlement by the perpetrator over the objections of those he has harmed. Who has signed off on behalf of those at the concentration camps at the southern border? On behalf of the people whose advocacy work on Capitol Hill has been made immeasurably harder? On behalf of those members of the groups he led, or leads, or who have been passionately committed to passage of DIA and who have now been branded racists? On behalf of the members of the self-advocacy and neurodiversity submovements who were attacked in the second video?
Moreover, the leaders in those videos not only made enormous errors, but they led untrained teams who were unprepared to shut those errors down. These are activists with enormous skill sets – and enormous deficits in tactical preparation. And, unlike many chapters operating almost on fumes, Rochester and Atlantis had the resources to provide robust training to their teams so that what happened at Representative Pallone’s home and in Representatives Eshoo’s and Correa’s offices could have been avoided.
Finally, Darling at least is a student of the norms of ADAPT, and highly skilled at manipulating them to get his own way. Russell’s talents in that area seem more instinctive. Simply expecting other ADAPTers to do better at reining them in, without being provided any additional training in how they use the principles of influence and ADAPT culture to obtain and use disproportionate power, or additional formal procedures so that, like NCIL, ADAPT has stronger methods to defend against abuses of the implicit “rules” which govern ADAPT in practice, is unlikely to work.
To retain Darling and Russell in the national leadership of the disability rights movement, in other words, is to commit to business as usual, to the same problems that the Darling/Russell Videos illustrated so clearly, to the same ways in which the people who have not been historically prioritized by the IL movement will continue not to be, and to the consequences denying those people seats at the table and access to agenda-shaping have harmed them – and the movement as a whole.
To retain them as architects of DIA strategy is to retain a DIA strategy marred by prioritizing who deserves justice now and who should wait, and that is associated in the minds of the legislators we need to reach (as well as many of the disabled people who are being asked to promote it) with aggression, racism, and vicious in-group attacks. At a minimum, I believe the disability community needs to stop pushing DIA, regroup, rebrand, restaff the strategic team, and then move on in a new way.
If we are to serve the mission of free our people! – which, again, is the mission Darling and Russell have committed to as ADAPTers – or even the mission of pass the DIA, much less the mission of disability justice (intersectional justice challenging all the interlocking systems of privilege and oppression, supremacy and dehumanization, together, as one, with priority being paid to the most affected), I believe it is time for Darling and Russell to stop worrying about what the disability community owes them and start worrying about what they can do to serve the interests of the people and the movement they say they have devoted their lives to.

 

There were signs, almost from the outset, that neither Darling nor Russell had any intention of giving up power within ADAPT. Darling’s apology insisted that he had acted in a manner that was out of character; Russell didn’t even bother to apologize. IJ insisted that the closed-door amends process be respected. But that process, in which Darling made amends to proxies for people he had harmed without most people he had harmed even being afforded a chance at an opinion about the process – a disturbing reminder of what Justice Kavanaugh thinks is “good enough” for people with intellectual disabilities – and Russell appears to have not bothered with even that much, is not transparent. It became clear over time that Darling and Russell would be two of the roughly 30 people deciding the ADAPT priorities for the next 6 months, and that the rest of ADAPT would be expected to trust their judgments and skills.
And then, on July 24, 2019, 8 days after the videos aired, an email landed in my inbox. It was signed by Dara Baldwin, and it was the kind of email I had been getting for months: lists of instructions about what to do next on DIA.
At that moment I realised that Darling and his allies were not even making any pretense that they would abide by the decisions or listen to the counsel of the other ADAPT leaders, that group whose consensus decisions they insist they are bound by. They had made their decision that it would be business as usual, that they would retain the same authority they have long had, and they would do it not by persuading their colleagues that this was the right way to proceed, but by employing the Heat of the Moment and Personal Loyalty norms. They would just continue to behave as if nothing had changed, and trust that, whatever cosmetic alterations the group went with, it would not challenge them substantively, any more than it had challenged Darling substantively when he announced which institutionalized disabled people ADAPT was making no effort to free, or which institutionalized disabled people’s needs and perspectives were worth taking seriously.
As much as I have loved being an ADAPTer, as desperately as I wanted to continue to do civil disobedience work with the kinds of people one meets at an ADAPT action, I will not follow leaders I trust as little as I trust the people who used those moments in Representatives Eshoo’s and Correa’s offices to harm the community – and who have, I believe, established a history of no accountability for problematic behavior. I resigned from ADAPT.

 

15.
On July 25, 2019, the awards banquet at the NCIL conference was underway. It had been a challenging conference, as participants struggled to come to terms with the fallout from the Darling video, but for a moment they were celebrating. The awards for current work had been handed out, and Colleen Starkloff of the Starkloff Disability Institute was preparing to present Marca Bristo, the Executive Director of Access Living, with a lifetime achievement award.
At some point during Starkloff’s speech, a protest began. A group of disabled people of color and their allies silently held up signs.
“America is the land of immigrants.”
“Know me, not my skin.”
“Libertad y justicia [freedom and justice], not promises.”
“Never again para nadie [for anyone].”
“To all disability organizations, disabled people of color demand change. Not words and diversity ‘plans/statements’.”
“When we demand liberation, we demand liberation for all.”
“No one is free, until everyone is free. Disability leadership must include disabled people of color.”
“We are tired of listening sessions. We demand action!”
“Disabled black and indigenous people of color demand action, not just words.”
Starkloff continued with her tribute to Bristo as if the protesters were not there.
And then it was Bristo’s turn. Bristo did acknowledge the protesters. “Before I say anything else, I would like to acknowledge my colleagues who are in the audience here. And say to you, ‘The people, united, will never be defeated.’ I respect your signs, I respect your protests. And I hope that, and trust that, my NCIL family, will deliver upon the promises that they have made. She then turned back to her recollections and achievements.
In Bristo’s telling, when women told men that they had run NCIL long enough, things promptly changed. “The night before, the NCIL election, that year. Somewhere around ’85, convened a group of women — she’s passed notes around, please come to my suite at 7:00 tonight. And we didn’t know what she had up her sleeve, but we showed up. And Sharon’s vision, was to run a woman’s slate, because up until then, the guys had been running the show, no offense to my male friends in this room, who I love and respect; but women had been behind the scenes doing a lot of the work.”
When blind people told wheelchair users they were not getting access, “they walked out. And, NCIL, took that seriously, and began the process, long before, other non-blindness organizations did, to put in place a policy for reasonable accommodation not just for that disability; but for others.”
The message was clear. If you want full equality within the IL movement, just ask, and you shall receive. But this is not the experience of disabled black and indigenous people of color, who have been asking, and were told that the message from the dais this year would be a racist one. It is not the experience of people with I/DD, many of whom still do not have even the most minimal access to the benefits NCIL offers.
Bristo talked about the power that she and others had found in the movement, the community, and the purpose. She talked about the need to do better (on race, though not on cross-disability issues). Many of us watching around the country believed Bristo would invite the protesters onto the stage and hand them the mic, or that the NCIL staff or board members would ask her to, but Bristo – who, it should be acknowledged, had mentioned that she was on what appeared to be an unfamiliar amount of pain medication due to the rigors of travel during cancer treatment – kept talking.
And all the time the protesters stood or sat silently, with somber dignity, their theatre clean and clear, their message, their demand, their challenge to the history Starkloff and Bristo represent one of truth to power, and never fully addressed. It was a stark contrast to the performances seen 9 days earlier on the Darling/Russell videos.
Bristo explained to the white leaders in the room what she believes racial justice demands of them, based on her experiences and achievements in the past, and the disabled leaders of color and their allies who came prepared to lead us into the future waited silently for her to be done.
Finally, the event was over. Bristo handed the microphone to Sarah Launderville. Launderville offered the protesters a chance to speak. They did not take it.
On Facebook, commentator Maud Steyaert summed it up: “We’ll pass you the mic when the mic is dead.”
Launderville read the signs aloud for anyone who could not read them. And the conference attendees moved on to the next order of business.

 

Where will we be as a community as we celebrate the 30th anniversary of the ADA next summer? Will we have managed to strengthen the bonds of trust and inclusion with those we have marginalized, or will attacks on one another from national disability rights leadership still seem like business as usual?
How much longer will people of color, immigrants, and people with intellectual and developmental disabilities be willing to maintain a community held together by shared ideals, when those ideals are so often betrayed in practice? We are stronger together; but when the strength consistently flows from the most marginalized among us up the hierarchy, and is not reliably returned, at some point the divisions that exist in the community will tear us apart.
And how soon will our community be able to raise a generation comprised entirely of children who can take for granted that they will grow up included, educated, supported in their self-determination, and with seemingly limitless horizons, who never have to look at the people around them and see a failure to recognize their humanity, much less their value?

Are There Bad Support Staff? A Stream of Consciousness Rant Too Long for Twitter.

Here is a tweet from @Open_Future. It says “There’s no such thing as a bad support staff person. There are broken systems and services.”

Your knee-jerk reaction is almost certainly “Well, that’s not true!” You can think of bad DSP’s. (I know I can.) Or at least you can ask yourself whether anything is stopping horrible people from getting those jobs. (Answer: no.) But please, DON’T LET YOURSELF GO THERE. There is a lot to learn from what you have just read but you have to engage with it.

This is an unnuanced statement, sure. It is a tweet. Granting that, let’s engage with the reframing that @Open_Future is giving here.

Here is a short video about what the discipline of social psychology is. The fundamental insight of social psychology is that much of our behavior is determined by our social contexts. That’s why structural ablism needs to be studied and addresssed: the bad thing is in the very joists and beams of our society and it affects is all.

Here is a short video about the Milgram Experiment, a famous experiment which predates the Judge Rotenberg Center but also explains a lot about how it works (and why there are cameras everywhere – hint: it is not to prevent abuse but to ensure that it happens). The Milgram Experiment tells us a lot about why perfectly ordinary people will do horrible things when told to.

(I’m not using Zimbardo’s Stanford Prison Experiment here although I know that is the next move you can expect. I think there are unresolved problems with it.)

Now, start thinking about some of the serious thinkers on the subject of adequate support for people with disabilities. I have been fortunate enough to know some and to study others. I have listened to people like Roland Johnson and Julia Bascom, Deej Savarese and Finn Gardner, James Meadours and Mel Baggs.  And I have struggled with this myself.

Almost every innovation we can come up with to increase self-determination can get turned back and used as an instrument of control. What is the answer to that? “Bad staff”? Or is the answer that there is something in the system we are not contending with? I would argue that the latter is a far more powerful force.

Back in 1975, in Fundamental Principles of Disability, Paul Hunt read this into the record, from a statement prepared by the Union of the Physically Impaired Against Segregation (UPIAS):

... Disabled people are therefore an oppressed group in society. It follows from this analysis that having low incomes, for example, is only one aspect of our oppression. It is a consequence of our isolation and segregation, in every area of life, such as education, work, mobility, housing, etc. Poverty is one symptom of our oppression, but it is not the cause. For us as disabled people it is absolutely vital that we get this question of the cause of disability quite straight, because on the answer depends the crucial matter of where we direct our main energies in the struggle for change. We shall clearly get nowhere if our efforts are chiefly directed not at the cause of our oppression, but instead at one of the symptoms.

To the extent that the problem is systemic, it matters. So long as we are trying to root out “bad apples” when the real problem is the barrel, we will never she the problem. We must attack the roots of the problem, not the branches. I’m sure there are plenty more metaphoric clichés I could find, but they are clichés for a reason.

So let me start with a quick question: cui bono? That’s a Latin question; it means “Who benefits?” And the reason people like many of us know it in Latin, when we know very little Latin to start with, is that it is such an important question that people trained in the Western educational system are still quoting people who asked it thousands of years ago, in Latin.

Who benefits from everybody thinking the problem is bad staff people?

Well, for one, everybody who benefits from us not overhauling the system to make it work better. That is, all the people who design programs that don’t actually work and can say “I gave them a great program, but there are bad staff people, so what can you do?” Also all the people who have high level positions. All the higher-ups at Bellwether and Devereux and so on. And all the people in the independent living movement who want to say “We have a great model for people at risk of institutionalization and we don’t need to change it, because it is not our fault at all that it isn’t working for the majority of those people.” People benefit when they want to be the ones in control without having to take responsibility for it. The group home managers, the family members, the school districts, the staff unions (AFSCME/SEIU). A lot of people benefit.

And if the issue is that the problem is systemic, then we also need to ask, who pays? Who is harmed? The people caught up in the service systems, or at risk of being caught up. People in developmental centers, people in ICF’s, group homes/CILA homes, people in special education, people on HCBS waiting lists, consumers with I/DD at CILs, people in sheltered workshops, and so on. People beset by what Lucy Gwin called “PLODs” — persons living off disability.

Let’s look at applied behavior analysis, as a concrete example. The people who do it insist that every critique of ABA we make is really an anecdotal report of abuse by one of the few bad ABA practitioners, in the bad old days, but the field has moved on mostly, and besides, every field has a few bad actors. They feel for survivors, really they do, but they don’t have to listen to them. Cui bono? ABA practitioners. Who is harmed? Their victims.

What if our answer to that is, “There’s no such thing as a bad BCBA/RBT. There are broken systems and services”?

Does that change how we approach things? Yes. It means we are not trying to reform ABA so as to maximise best practices, as I keep getting urged to do. It means we are trying to end it.

ABA is a form of non-congregate institutionalisation. And institutionalisation is an inherently harmful system. There are “good workers” in institutional settings, people who try to mitigate the brutality of them. And the work they are trying to do is not unimportant. I am grateful they exist. But at the same time you cannot function as a good person in the context of a structurally harmful setting so it is not enough to be a “good worker.”  We could have 100% good people trying to do their best within the system and we would still produce horrible results.

A discussion of the core features of institutionalisation and why congregation is not one of them is beyond this rant. We can talk about this later. Let’s talk about congregation/segregation institutionalization on the continuum from group homes to developmental centers.

I get asked a lot, incredulously, whether I really mean that people with disabilities should not be in institutional settings. This is not a real question. It’s rhetorical. Of course people with disabilities belong in institutional settings! They can’t be self-determining! Have you met them? (Yes, I have. I am one, and I have supported others. I am one of those people who tried to be a good worker in an evil system. And I am proud of a lot of what I did, and still it was not and never could have been enough.)

You are probably thinking that is old news. Everybody gets asked that. What’s not old news, though, is who is asking. I don’t talk much to people outside the movement. They don’t interest me. I get asked this by ADAPTers, by independent living specialists at CILs, by NCIL employees, by movement bigshots. Of course, they don’t mean disabled people like them. They mean disabled people like — well, not me, but I mean, you know. Here is an old, old attempt I made to grapple with this problem. Nothing has changed.

I’m not going to name people in public, but I will say that I get a lot of “Who said what?” when i name them in private conversation. And then they get blamed by the people who benefit most from the systems within which they operate. I have been told that a black woman who is well-known in the disability justice movement and who has formidable strengths “probably has an intellectual disability” and that is why she says and does certain things. (First, there is no reason to suspect she does, and second, even if she does, that wouldn’t explain what she said.) I have been told that a man who had at the time been employed by his CIL for almost 3 decades and has acquired quite a track record “hasn’t been here long enough for us to train him” and that’s why he says and does certain things. I get a lot of low- and mid-level staff identified as “the problem.” On the rare occasions that members of the upper echelons are identified as the problem, it is always people who are kind of not respected and have no real power anyway.

Are these bad people? I don’t think so. Are they untrained and unskilled, and do disabilities nobody suspects they have except when they do things people want to disavow prevent them from becoming trained and skilled? I don’t think so. Are they participating in and shaped by deeply flawed systems? I think that is it. But the response to raising these concerns is never to address the system.

When we take a systemic problem and treat it as a collection of individual problems, we move the problem out of reach and ensure that it cannot be fixed.

@Open_Future’s statement is probably not literally 100% true. But the vast majority of people working in the field could be supported to promote the kind of self-deternination that everybody with significant support needs deserves and most are not getting. And we who participate in activism and advocacy, and those who participate in service provision (which damn well includes CILs), need to stop being complacent about this and saying “We are doing our jobs, but the support workers suck” and start looking to the root causes of why they are doing such bad jobs in so many cases and how we can fix the system — exactly as Paul Hunt and the other members of UPIAS told us to, nearly 45 years ago.

Okay, rant over. For now.

Sticks and Stones

Yes, Mr. Harvey, “retarded” is a word. It is also a loaded weapon.

 

It is a word that encapsulates the ideology that people with intellectual disabilities are exactly the same as the rest of us, but slower, so that when they reach adulthood, they are still “really” children. Children in our society are regarded as less capable than adults, and they are denied roles and rights that adults take for granted. And thus these things happen to people regarded as “retarded.”

 

Fetuses expected to become retarded people are often selectively targeted for abortion, although they and their families can lead wonderful lives. Those prospective parents who choose to have and to raise their children are encouraged to think of their future babies in terms of deficit and loss.

 

Infants regarded as “retarded” may be left to die rather than provided basic lifesaving care.  Their parents receive condolences rather than congratulations at their birth.

 

Children regarded as [the R word] are frequently forced out of mainstream education into segregated programs where they are prepared for deeply limited futures.  Some are abandoned by their families altogether, and those largely go into institutional “care.”

 

Youths regarded as [the R word] are shunted into no-future day programs rather than encouraged to learn job skills or to build rewarding lives without employment.

 

People wishing to move out on their own who are regarded as [the R word] are often offered only care under the direction of others rather than lives in which, with support, they make their own decisions and express their own desires.

 

Adults regarded as [the R word] may be denied the opportunity to form mutually desired romantic and sexual relationships.  Their romances may be broken up.

 

Parents regarded as [the R word] frequently have their children ripped from them.

 

Job-seekers regarded as [the R word] are likely to be presumed incompetent and denied jobs they can do for that reason.

 

 

Neighbors regarded as [the R word] tend to be isolated, and tend to be regarded with suspicion by those concerned with their property values.

 

Patients regarded as [the R word] usually receive substandard medical care. They are believed not to feel pain or deserve the same care as others.

 

Human beings regarded as [the R word] have expressed for many years how much the term hurts them, yet people continue to use it without regard for their feelings.

 

[the R word] is a brutal and powerful word, which is used to limit, control, and destroy human beings. It’s a word. But it’s not just a word. It is a loaded weapon, and it has killed people.

 

For decades, those at whom the weapon is aimed have asked us to put it down. Many people have. Many people haven’t.  Picking up that weapon and firing it, Mr. Harvey, is an act of aggression.  When people criticize Mrs. Harvey for firing it into a crowd, they are not just looking for something to be upset about. They are upset because she is hurting people. Real people. People who do not deserve to be hurt.

 

People with intellectual disabilities are our children, our siblings, our playmates, our friends, our neighbors, our parents, our relatives, our community members, our coworkers, our customers, our allies, and our leaders. They are lovers and fighters, activists and advocates, homebodies and social forces of nature, sports and science fiction fans, students and athletes. They are talented and creative and beautiful and smart and wise and strong and wonderful. They are human beings, the same as anyone else. And to use one of the most hurtful words in the English language to target them is more than just using a word. It is an act of aggression, intentional or not. It may not be at the level of Pennhurst and Willowbrook, Fernald and Forest Haven, but the ideology of [the R word] helped to sustain those places.

 

Decent people strive to eradicate the word from their vocabularies. They don’t defend it.

 

Yes, Mr. Harvey, [the R word] is a word. But it is so much more.

Autism Awareness Month

To the larger disability community,

Some of you have been asking what you can do to support autistic people during Autism Awareness Month. Thank you!

Of course, if you want to support specific people, ask them. Autistic people aren’t mass-produced. We come from sex, just like everyone else, which means means we start out as individuals, and then life shapes us into completely unique people.

But in recognition of the fact that it is not always easy to figure out how to express your concern for people who are different from you in a way that they understand, here are some more generic suggestions in the hope that you find a way of expressing your support for our community that works for you. Please keep in mind, again, that we are individuals. We may not all agree on what’s helpful, and if someone tells you they don’t like the way you are trying to support them, it’s important to listen.

1. Watch and share this video: https://m.youtube.com/watch?v=mR37CvpPYUk Ask yourself: do the disability organizations you are a part of center autistic voices, including those of nonspeaking people, people with intellectual disabilities, and members of intersected marginalized groups, on autism issues and include them equally on cross-disability issues?

2. Take the pledge to only support organizations that do include autistic voices in conversations about autism: http://www.autismacceptancemonth.com/pledge/

3. Check out a classic article, Jim Sinclair’s “Don’t Mourn For Us”: http://www.autreat.com/dont_mourn.html Think seriously about what it is like to live every day with the message that your existence is something worth grieving.

4. Learn about the Neurodiversity Paradigm: http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/ Think about how that connects with pride in who we are, in self-respect, and in our ability to see ourselves as whole people.

5. Educate yourself about Autism Speaks, the entity behind Autism Awareness Month: https://autismwomensnetwork.org/is-autism-speaks-a-hate-group/ Find out why it is a hate group. Learn about some of the history: https://m.youtube.com/watch?v=C7NTfZzS9b8

6. Then learn about Autism Awareness itself: https://crippledscholar.com/2017/04/01/if-you-care-about-autistic-people-dont-just-perform-solidarity/

7. Instead of Lighting It Up Blue, Light It Up Gold (AU) or Go Red Instead: https://us.blastingnews.com/opinion/2016/04/why-adults-with-autism-aren-t-going-to-light-it-up-blue-this-april-00860367.html

8. Celebrate Autism Acceptance Month: http://www.autismacceptancemonth.com

9. Explore Allism Awareness (if you’re not autistic, you’re allistic): https://www.facebook.com/Toneitdowntaupe/ Learn what life is like for the family members who struggle to force their allistic loved ones to act the way we want them to: https://www.facebook.com/theNTwife/

10. But while you’re joining in the fun of it, keep in mind that the ideas people share about autistics have real consequences: http://autisticadvocacy.org/2018/03/remarks-from-julia-bascom-at-the-dc-ddom-vigil/

11. Think seriously about the assumptions you and others are making about the causes and meanings of the communication gaps that exist between autistic and allistic people: http://blogs.lse.ac.uk/businessreview/2017/07/31/employers-may-discriminate-against-autism-without-realising/

12. Understand that mainstream society’s expectations that everyone will communicate — or do anything else — in a particular way are not only not in line with reality, but actually preventing the world from welcoming and celebrating some outstanding individuals: https://theautismwars.blogspot.com/2017/08/how-my-nonspeaking-autistic-son-taught.html?m=1. Sure, sometimes these things are challenging. But if we accept each other we can get through it together.

13. Think about what it really means to support disabled people: https://m.youtube.com/watch?v=wunHDfZFxXw And put that understanding into action.

14. Encourage the autistic people you know in developing pride in who we are, rather than the shame that the deficit model promotes: https://www.broadreachtraining.com/you-get-proud-by-practicing/

15. Get comfortable with the pain and rage autistic people feel in response to how we are treated: http://www.mmonjejr.com/2014/10/its-time-to-accept-that-they-hate-you.html?m=1. Get comfortable with the mistrust autistic people feel in response to how we are treated: http://www.autistichoya.com/2016/12/i-dont-trust-allies-and-im-not-sorry.html?m=1. These things are not going away any time soon, because it is *hard* to be autistic in the world allistics have made.

16. And, speaking of pain and rage, you know all those “meltdown” videos parents keep sticking on YouTube? Ask us to explain them: https://m.youtube.com/watch?v=FhUDyarzqXE Because you clearly aren’t seeing what we see in them. They seem to suggest to you that we are subhuman. We look at them and see children pushed beyond their limits to cope.

17. Understand that we want a lot of the same things you do. Quit promoting self-directed home-based services for yourselves and “community-based” institutions for us. Quit promoting self-determination for yourselves and “socially relevant behaviors” for us. Quit fighting EVV while arguing that we should be fitted for GPS trackers. We don’t want exactly the same things you want, but we’re tired of you assuming things you would never tolerate for yourselves are good enough for some or all of us.

18. Oh, yeah, and we want full access to the movement, too: http://autisticadvocacy.org/2017/11/2017-asan-gala-speech-by-julia-bascom/ For every single one of us. Remember this pledge? http://www.autismacceptancemonth.com/pledge/ “Cross-disability” organizations are autism organizations, too.

19. But it’s not all about the work. One of the most powerful things you can do to help autistics resist the pain and exhaustion of Autism Awareness is genuine, reciprocal friendship: https://ollibean.com/an-autistic-weighs-in-on-friendship/ That’s not something a lot of us get much of.

20. Now, if you would, please watch this video again: https://m.youtube.com/watch?v=mR37CvpPYUk Every single one of us has something to say and a way to say it, but we need other people to listen to us. When you show the world that you are prepared to take “Nothing about us, without us” seriously, you are helping those people who are often silenced.

Thanks again for your interest in reaching out this April!

Against A.B.A.

Let’s talk A.B.A., neurotypicals.

A.B.A. is a behavioral technology that is used by neurotypicals, among other things, to teach skills to autistic people, especially kids.

Autistic adults have some concerns.

For one thing, it is traditionally used to make people act less autistic and more neurotypical. The presumption is, the closer to neurotypical, the better. We reject that. Autism is behaviorally diagnosed but it’s neurologically caused. We don’t act like neurotypicals in the first place because our brains are different from theirs and they cause us to act differently. Changing our behavior without appreciably changing our brains means causing us to act in conflict with our brains. In other words, alienating us from ourselves, altering our relationships with ourselves. Our relationships with ourselves are our own business.

For another, the “skills” they want to teach are ones neurotypicals like but they are frequently harmful to us. Eye contact, for example, decreases our ability to engage in two-way conversation. Quiet hands decreases our ability to express our emotions. Y’all may not value communication or emotional expressiveness and that’s fine. Be you. Don’t mess it up for those of us who do.

A third thing is, it is compliance-based. Compliance training decreases the chance that people will be able to comfortably direct their own lives and increases the chance that they will be abused. Y’all already abuse and murder us at ungodly rates. We would prefer that you not increase that. Actually, we would appreciate it if you would take steps to address the neurotypical violence problem. Hurting people doesn’t fall under the category of “be you.”

A fourth thing is, it is ridiculous amount of work. Preschoolers should not have 40-hour-a-week jobs. If you really want to increase the amount of child labor in the world, how about starting with the kids that remind you of yourselves? Don’t come after ours.

A fifth thing is, an overwhelming number of survivors (yes: survivors) say it is traumatic as hell. Look, we know you have deficits in empathy or you wouldn’t have given the world developmental centers, but here is a simple rule that you can probably learn: when you find out you are hurting people, CUT IT OUT.

This is not a comprehensive list. But “1. You’re hurting people. 2. You’re hurting people. 3. You’re hurting people. 4. You’re hurting people. 5. You’re hurting people” ought to be enough. I mean, yes, you’re the demographic that brought us the “Filicide — yay!!” and “30 days of bigotry” movements, but still….

Oh, and to the jerk who is upset that people saw 1,000+ A.B.A.-affiliated Facebook posters being happy about some dehumanizing jokes about the kids being subjected to the thing and thought, “Gee, maybe people who torture children are not quite as “awesome-sauce” as we have been led to believe” because it felt judgy with such a small sample, I am still waiting for you to tell me how many thousands of autistic adults an ethical A.B.A. practitioner gets to know before forming a judgment about how a child should be messed up and why I have never met a single person who was recruited for that work.

BTW, my first effort to find an A.B.A. therapist regarded by their peers as ethical whom I could interview failed. If anyone who hasn’t tried to come up with a name yet wants to give it a go, great. Otherwise I am taking the (literally) award-winning “BehaviorBabe” as an example. And some of us recall, that’s who put the jokes up.

But the jokes are not even close to the real issue. The real issue is:

WHEN YOU FIND OUT YOU ARE HURTING PEOPLE, CUT IT OUT!

And until neurotypical people can figure that one out, let’s quit wailing about how WE have deficits.

#TheRealTragedyOfAutism

A Knife Wound to the Gut: VOR and People With Disabilities

 

Please don’t read this.

 

If you’re here, you probably know me.  You already know the gist of what I am going to say.  So reading it is not the best use of your time.  Instead, use your time to click on the links I have included.  Listen to real experts you may not have heard from on the issues I am about to discuss.  Some of these videos are uncaptioned and all are undescribed, and I apologize for that:  I’ve done my best to make this accessible and I have fallen short.  But although I am often ignored in face-to-face contexts, when I write on the internet, people read what I have to say.  The voices in the links need to be heard by the people who read what I write – and I don’t think that’s happening. 

 

   

On 5 April, VOR (and if you need to ask what that stands for, Google it;  I’m not typing it out because the name contains a slur for the people the organization claims to be the “voice of”) sent a letter to the Secretary of Health and Human Services and the Administrator of the Centers for Medicare and Medicaid Services.  I’ve just seen it;  you can see it here.

 

The letter claims that VOR is advocating for the rights of all people with intellectual and developmental disabilities, that there are “degrees of disability” and that a significant number of people with severe enough disabilities want and require institutional care – so that care should be provided.  In fact, they claim that the best possible chance certain people have for community integration is institutionalization in intermediate care facilities.

 

None of this is new;  promoting the institutionalization of people with intellectual and developmental disabilities is VOR’s whole purpose.  They do it in the name of “degrees of disability” and of “safety.”  Even if institutionalization, done well, were, in fact, a safer option than community integration, done well – it’s not – what they are essentially saying is that certain people with disabilities should be treated like children.  We limit children’s freedom to protect and guide them.  As children grow toward adulthood, we must gradually empower them;  as adults we should be free.

 

VOR wants to treat adults with disabilities like children;  but adults are not children.  “We thought these were childlike people,” advocate Gunnar Dybwad said.  “This concept of the mental age, that ‘he had a mental age of six’ and therefore would behave like a child of six, which was nonsense, because no child of six weighs 122 lbs. and has lived twenty-two years.  And living twenty-two years makes you a different individual than living six years.”

 

Moreover, as a federal court has already acknowledged, unnecessary institutionalization is a form of discrimination.  Even institutionalization widely agreed to be both coercive and unnecessary continues today;  as a result Congressman Sensenbrenner and Senator Schumer have introduced the Disability Integration Act (D.I.A.), a bill designed to give people with disabilities a chance to live outside of institutional settings, in their own communities.  It is time to reject the VOR approach to people with disabilities, pass the D.I.A., and take another step forward in the long march toward full equality and meaningful justice for people with disabilities in America.

 

Rights and Representation

 

As writer Mel Baggs said when I brought up the letter, “You would think that if you wanted to make any claim toward being a group of people’s voice, then you would maybe – just maybe – not use a word to describe that group of people that 99% of that group of people experience like a knife wound to the gut.”

 

“I have been called ‘r*****ed,’” says an unnamed member of the self-advocacy movement from New Jersey, “and I never liked that word at all.”

 

The word “makes me feel like being put away, not wanted.  Like I’m not a person,” adds another self-advocate.

 

“It’s not nice to call other people names” adds a third.

 

I believe firmly that “the disability community” necessarily includes both disabled and nondisabled people who are speaking on behalf of people close to them, people who by virtue of age, denial of services, or the inadequacy of the current technology cannot effectively speak for themselves.  When those speakers-for are speaking from a disability rights perspective, that’s “the disability rights voice” too because that is the best voice some people with disabilities have.  But that doesn’t mean that just anyone in the vicinity of a disabled person can “speak for” them.  To be concerned with disability rights is to be concerned with – well – disability rights;  and from my reading in the various strands of the movement, this appears to be what we pretty much all agree disability rights are:

 

(1)               Survival.  This means survival as individuals – we need the basic supports to stay alive – and as impairment groups – so, for example, the current move toward the eradication of people with Down Syndrome is off the table – and as communities, so suppressing the language and culture of the Deaf community (which does not, as a whole, consider itself to be part of the disability community, but which I include because the critiques of “ability” and the basic approach to rights are so similar to the other strands) is also a violation of disability rights.  Obviously a right to survival is not absolute;  we are not immortal.  But we insist that we have the same right to survival as anyone else.

 

(2)               Self-definition.  We define who we are:  our values, our dreams, our ideas our role models, the way we describe ourselves and our identities.  Take a look at the neurodiversity movement, which is doing some fascinating work these days on difference as opposed to deficit;  or at the Deaf community’s response to the Congress of Milan back in the 19th century (I am no historian so I make no claims, but the Congress of Milan is as far back as I have been able to trace the specific constellation of disability rights ideas we work with today) and their insistence that, for Deaf people, signing is better than speaking;  or at the development of “crip culture” in spaces informed by the independent living movement.  One major attack on self-definition today is the applied behaviour analysis (A.B.A.) “therapy” for autistic people, which focuses on getting them to act as if they had neurotypical brains rather than minds of their own.  “I am a person first.  My disability is second,” people with intellectual disabilities have been saying for decades now.

 

(3)               Self-determination.  Every single strand of the movement insists, “We speak for ourselves.”  Moreover, all of the major populations that get institutionalized, including those represented by the sub-traditions in the self-advocacy, independent living and neurodiversity movements as well as the complex groups of people interacting with the psychiatric system and intersectional groups like Deaf and people with disabilities of colour, undocumented people with disabilities and disabled LGBTQIA people insist that freedom is a core disability right.  And of course it is:  human beings are born with a drive to be uniquely ourselves, to make personally meaningful lives.  Disabled human beings are no different from anyone else in this respect.  That requires freedom.  Beyond this, we have as much right to shape our own lives as anyone else.  Again, this is not an absolute right to control the environment:  we are not dictators.  But we ought not to be any more limited than anyone else – and that includes people with limited communication systems, who can nonetheless convey what they enjoy and what they do not to support people who are paying close attention.  “I want to be in charge of my own life,” the great disability rights leader Roland Johnson said.  “I want to be in charge…. I want to be in charge over my own life.  Not you telling me what to do.  I want to be in charge of my own life.”

 

(4)               Access.  Barrier removal is a huge issue.  The blind community, for instance, has fought together for coming up on 80 years to address the limitations that the sighted place on the blind;  the Deaf community has fought for access to communications;  the independent living movement has fought to access to physical spaces;  the self-advocacy movement has fought for physical and cognitive access;  people who identify as having mental illnesses and those involved in the psychiatric system have fought to address barriers based on preconceptions about them as well as barriers based on the expectation that everyone will be cognitively typical;  the neurodiversity and psych survivor movements have fought for the freedom to go places and do things without anyone intervening;  the parents’ wing of the movement has fought for access for their kids.

 

(5)               Supports.  Many of us require supports that nondisabled people don’t.  It’s not that they don’t have support needs – as social animals, humans are brimming with support needs – it’s that their support needs are quietly and invisibly met by society (although some in society get their support needs much better than others) while ours are not.  Some of us need assistive technology;  some need financial supports because of the additional costs imposed on disabled people that enabled people do not bear;  some need medical or psychological care;  some need support workers and personal attendants.   People with disabilities – all people – should have access to the tools we need to make meaningful, good lives for themselves just as the most enabled people do.

 

(6)               Inclusion.  And finally, we want a voice, a place at the table, meaningful integration, a chance to influence our society in the direction that we want it to go – just like everyone else.

 

These rights play out in very different ways for different impairment groups because we face very different barriers.  For example, the independent living movement fought hard not to be forced into segregated education;  the Deaf movement fought very hard not to be forced out of programs designed to meet the particular needs of manual communicators and into a mainstream not prepared to welcome them.  But the underlying principles seem consistent to me from everything I have read, and to me the critique of equal ability being required for equal status in society plus the demand for those six rights is what characterizes the disability rights movement.

 

VOR is opposed to self-definition;  their very name flies in the face of what people with intellectual disabilities have been saying in almost complete consensus for decades.  As Valerie Schaaf said more than 40 years ago, “it’s terribly cruel that we are spoken this way, labelled this way.  To me, if you gotta label something, label words, label jars, label streets.  But don’t label persons.  You put ‘em down in the hole.”

 

VOR is opposed to self-determination, with its insistence that some people, simply by virtue of who they are, belong in institutions.  It is opposed to meaningful inclusion because meaningful inclusion cannot happen from an institutional setting.  It is not a disability rights organization and it has no place pretending to represent the rights of people with disabilities.

 

Degrees of Disability

 

On one hand, the claim that different people with disabilities are different and have different needs is fairly straightforward.  On the other, VOR completely ignores the role that institutionalization plays in limiting the capacities of disabled people.

 

35 years ago, the television show St. Elsewhere ran a truly horrible – even by the standards of the day – episode dealing with Down Syndrome.  In it (see 15:49-19:05), a couple pregnant with a long-awaited son is told that the fetus has Down Syndrome.  A conversation follows in which, in brutal ignorant terms, the life of a child with Down Syndrome is described.

 

“How r*****ed will the baby be?”

 

“It’s hard to say exactly.  Some Down’s children live well into their twenties.  But they are children forever.  The average mental age is about seven years old, though some do considerably better.”

 

“Will the baby be deformed?”

 

“There’s a high risk of some sort of deformity: arched palate, slanted eyes.”

 

This prognosis, let alone this idea of “deformity,” seems absolutely ridiculous today.

 

“Some people call Down Syndrome a serious handicap, but it’s not,” says a woman on a BBC3 clip about “Things People with Down Syndrome Are Tired of Hearing.”

 

“We can all live amazingly active lives, can’t we?” says another.

 

“She can be anything she wants to be,” says the mother of a small child with Down Syndrome.  “Unless she wants to play for Liverpool, in which case…” – she shakes her head.  “Everton.”

 

What happened?  Down Syndrome is a chromosomal condition;  the human potential of people with Down Syndrome hasn’t changed in the last 50 years.  What’s different is that the person being described in the St. Elsewhere episode, although the screenwriter never makes this clear, grew up in an institution.  That description is based on an institutionalized population, people with 100% hepatitis infection rates, people denied educations, people who were, for all intents and purposes, denied futures even though they were allowed to physically survive for as long as they could hang on.  People who grow up free, in families, with adequate education and supports, are completely different.

 

And even people who have already been institutionalized long-term can benefit from moving out.  At a national conference, self-advocate Roberta Gallant reported, “I am a former resident of the Laconia State School and Training Center in Laconia, New Hampshire.  Now I live in Concord, New Hampshire.  I have my own apartment.  I made some friends where I live.  For 25 years I lived at the Laconia State School and we should have not ever gone through this situation, no.  Do any of you agree with me?” she asked, to calls of “Yes!”

 

The “Need” for Institutional Care

 

I have never met anyone who wanted institutionalization.  And I have known a great many people with disabilities.  We don’t want it.

 

“I was there for ten years,” says Richard, a survivor of Woodlands School in British Columbia, “and it was – no, it’s not worth living in there at all, because the institution itself was so much abuse going on and it was just horrific and we should not have gone through that.  Because now I’m out and living in the community and I’m glad I moved out of there … and it’s just, just incredible.”

 

Perhaps the most visible anti-institution activists with disabilities are ADAPTers, whose chant “I’d rather go to jail than to die in a nursing home!” has been echoing across America since before I understood there was such a thing as a disability community, but the disability community is all but unanimous on this point.

 

In the film Hope Is Not A Plan, Brian Tardiff, who supports people with disabilities, reports, “There were six people, all of whom had lived in one of our institutions for many years [and] with the help of many people in the community were able to move out.  So I wanted to know how they would feel if, for some reason, they had to go back there.  The first person to respond to my question said, ‘I’d probably kill myself.’  And then, that was what you heard from everybody who was part of that conversation.”

 

I have, on the other hand, known plenty of people who have made their peace with institutionalization because they thought they had no option.  I have known people who thought it was the only way to get the supports they needed without arduous work they felt unequal to.  I have known people who thought institutionalization was the least bad of a set of lousy choices.  I have known people who have given up.

 

Dick Sobsey has spoken about experiments on dogs who are shocked by electricity through their cage floors.  “What they discovered was that if the dog was in a situation where they really couldn’t escape from an aversive stimulus for a long enough time, they would just basically stop trying and effectively they became extremely passive and just allowed themselves to be shocked.

 

“Now, for people with disabilities who have been in institutional settings, etc., we also see the development of learned helplessness, and in the most extreme circumstances it actually bears an amazing similarity to the experiments that they did with dogs in the 1970’s.”

 

VOR suggests that these responses to institutionalization are choice.  But we know betterWe have been doing this for decades and we know better.

 

“In order to change the old attitudes, we gotta get out in society,” independent living leader Ed Roberts once said.  “We’ve gotta be seen.  We gotta be the neighbours.  We gotta be the lovers.  We gotta be the friends.  We’ve gotta be seen in a very natural way.  Disability’s a part of life, and some of us are going to have it.  And some of us are gonna have it young, and some of us are gonna have it older.  But whenever it comes, our job, you and I, is to make sure that we know that we don’t have to put somebody in an institution.  That we can have high expectations of them and their future.  And that by helping them begin to take control of their own lives, they can go back to work, or go to work, or do – dream what they want to dream and make their dreams come true.  Like we all do.”

 

There was a time when state schools like Willowbrook and Pennhurst and Fernald were considered the best places for people with intellectual and developmental disabilities, and VOR was there to defend them as they fell out of favour.  There was a time when Intermediate Care Facilities like the ones VOR is currently defending were considered the best.  There was a time when small group homes were considered the best place.  Today “intentional communities” are in vogue.

 

What all of these settings have in common is what Roland Johnson, himself a survivor of Pennhurst, got at all those years ago:  “Who’s in control?  I want to know … are you in control?  Are staff in control?  Well, I understand that you need to be in control.  Some of [you] are not in control because staff tells you what to do….  I don’t believe that you are in control over your life….  You … are supposed to be in control of your life.”

 

Whatever the advantages of institutionalization may be – and there are institutions with some positive qualities, places where dedicated staff do their best – human beings are meant to be self-determining individuals.  The presence of impairments that make self-determination harder means we must work harder to support that most basic of human rights, not that we may turn our backs on it and institutionalize people.  Institutions by their very nature negate freedom and self-determination.  They are not good for people, as Jensen Caraballo’s story reminds us.

 

Caraballo was admitted to a nursing home when he was fifteen, “only … for a month,” and ended up staying close to six years.  “I just sat in my room for hours, not knowing what to say or do.  All I kept thinking to myself was, ‘I can’t wait to get out of here.’”  It wasn’t until he was 18 that Caraballo “realized I had other living options after talking to a friend of mine that worked at the Center for Disability Rights.  That’s when I decided to fight for my freedom.”  Not only would he not choose to go back, but he now spends his time fighting to get others out of institutions.

 

Furthermore, while there are some positive features of some institutions, any support that can be provided in an institution can also be provided in a free setting.

 

VOR specifically mentions people with “challenging behaviour.”  In video from the same conference where Roberta Gallant spoke, self-advocate Bryon Murray reports, “You know, when I travel, I hear a question: ‘what happened to people with the really bad behaviour?  What happened to people who hurt themselves or hurt others?’  Supports!  If you take the Bryon that you see today, 11 years ago I’d be slamming my head towards the wall.  I’d be biting people because I feel trapped.  I’d be running away.  Run.  Don’t understand.  Don’t understand what traumatic brain injury does.  Don’t understand disabilities.  Not accepting it, denying it.  Then when I got my supports, this is who I am.  You know what?  Instead of asking that stupid question, ‘What happened to people with behaviour?’ –  okay, what kind of supports do they need?  What do we need to come up with?  What is the plan that needs to be done?  You know, figure it out. Don’t just sit there on the problem.  Find the solution!”

 

Like Roland Johnson, a one-time President of Speaking For Ourselves, the great disability rights leader and Olmstead victor Lois Curtis, an artist with an intellectual disability, was one of the people who paved the way out of institutions for so many, by filing a lawsuit protesting being held in a psychiatric institution even after she had been approved by her treatment team for a more integrated setting.  At a press conference later, she told people her address over and over again:  having a home, having an address was that important to her.  VOR filed an amicus curiae brief opposing Curtis;  they were wrong then and they are wrong now.

 

The independent living movement provides us with clear evidence that highly trained specialists are not required to support people with disabilities.  Only a small amount of that training is needed for any one individual, and there are highly competent people without extensive medical training doing that work every day for members of the community.  In fact, as service users point out, it’s better to start with someone with no preconceived ideas about disabilities and train them.  People steeped in the medical model of disability – as medically trained workers are – have preconceived ideas.  They tend to view people with disabilities in terms of deficits rather than just as people, and that viewpoint is one of the biggest barriers people with disabilities face.

 

Again, as Roland Johnson so powerfully pointed out, in institutional settings, the staff – the people who take the deficit approach – are in charge and in control.  That’s not how it works in independent living.  Jesús, a personal attendant, reports that “Definitely you have to understand independent living philosophy when you have this kind of job.  You don’t have to be a doctor, or a nurse, you don’t have to cook well.  You just have to know that you are a service to the user, so it’s as he says.  We can talk about it, right?  We’re people.  But if he likes it that way, I just do it.”

 

We don’t need to shelter people in institutional settings under the command of a medicalized staff.  “I truly believe each person’s different,” Jesús says. “So in personal assistance, training should be provided by the user, right?”  We need to better connect people with intellectual disabilities with the independent living specialists who already exist and are already ready to serve the entire disability community, so we can figure out ways to adapt the process of hiring, training, managing and firing personal assistants so that it works for a much wider group than already has access to it.  We need to do that now, because people are dying on waiting lists to get into the community.  People are dying waiting for freedom.

 

To answer that most fundamental human need, we need to change the system of support provision.

 

Safety

 

VOR talks about the importance of surrounding people with disabilities with a highly trained and professional, caring staff.  Geraldo Rivera, who brought the conditions at Willowbrook – at state institutions for people with disabilities in general – to public attention, later said, “There is no place where you can mass-produce care, compassion and concern for people.  It is impossible.  It is fundamentally unsound.  The assembly line works for cars, it does not work for people.  People need humanity….  They need to be able to fulfil their potential, whatever their potential is.”

 

Two important criteria for fulfilling one’s potential are the presumption of competence, or the basic default assumption that you are a capable person who can and will benefit from the same things as anyone else as opposed to a basic default focus on you as a person with deficits, and the dignity of risk, or freedom from protective systems that attempt to ensure you will never get hurt.  Nobody is completely competent in all settings, and sometimes people do get hurt.  But these are things the enabled population so take for granted that they do not even recognise how important they are, and their absence hurts us far more deeply than the people who wish to strip us of them can possibly imagine.  VOR’s “degree of disability” argument is a presumption of incompetence for some people with disabilities;  its safety argument is an imposition of the indignity of protection.

 

It’s easy to look at some people with disabilities and think, “They’ll never be able to direct their own lives.”  But people will surprise you.  Properly supported people are capable of more than anyone ever thinks they are when they are unsupported.  And some people are capable of truly astounding things.  The presumption of incompetence, or the basic default assumption that it’s not worth trying because of the extent of a disability, is itself what produces the incapacity VOR is using to defend not trying.  Protection, too, when it is imposed from the outside on the basis of low expectations, becomes a prison rather than a haven.

 

Moreover, the protection doesn’t work.  Institutional settings are rife with abuse.  Jennifer Msumba’s powerful story of being at the Judge Rotenberg Center (J.R.C.) is unique only in that she was subjected to aversives, which many institutions avoid, and in particular the G.E.D., a skin shock device used only at J.R.C.  The behavioural control and dehumanization – and the resulting trauma – Msumba describes are repeated in many places.

 

In the film Hope Is Not A Plan, Tim Stainton from the University of British Columbia Social Work Department says, “Well, I think the evidence about abuse in institutions is pretty strong from a couple of perspectives, that … you can go back as far as the earliest institutions and really, pretty well, any time anybody has bothered to look deep enough or scratched the surface, they have found evidence of abuse.  And that goes right back to the very first institution for people with intellectual disabilities in Switzerland, in a place called Abendberg, back in the mid-19th century.  And that pattern has been pretty consistently repeated across countries, across eras, across jurisdictions, and across populations.  It’s nothing particular with disability, but it does seem to be something inherent in institutions themselves, whether they’re for the elderly, people with disabilities, for children, residential schools.  So I would say the evidence is pretty compelling that there is something in the nature of an institution that tends to engender abuse.”

 

As I was beginning to write this post, two stories happened to come across my newsfeed.  The first concerned a man who had been neglected in a group home to the point that he had an infestation of maggots in his throat.  The second concerned an overwhelming pattern of abuse in state institutions in Washington State.  “The 2016 reports read like documents from the 19th century when people with Down syndrome, autism, or other disabilities were isolated in asylums and often neglected,” reports Tacoma, Washington’s The News Tribune.  That’s not that surprising.  Each generation of institutional survivors is told that things have gotten better and there is no more need to worry.  It happened to members of the self-advocacy group Project Two in 1979 when they investigated the alleged abuse of Jonathan Allen, then age 10, at the Beatrice Developmental Center;  it has happened to me for years;  it happens to everyone.  But the abuse and neglect continue.

 

The stories of abuse I saw this week are not isolated.  In fact, there is story after story after story of neglect and abuse, story after story of huge patterns of neglect and abuse, in institutional settings – and this despite the fact that reporting rates are incredibly low and privacy laws prevent most of the stories that are reported from ever becoming known.

 

There is no way to guarantee that someone won’t be abused, but there are things that can be done.  You don’t build a small enclosed environment and try to make it safe.  You introduce the people you want to protect to other people.  You make sure they are known.  People hurt objects rather than other people, so to protect someone you support them to meet and socialize and live alongside others;  you ensure they are known as fully human beings.  You protect people best by integrating them into the community and making sure they have relationships with others who care about them.

 

Community Integration

 

Finally, VOR suggests that institutionalization provides the best route to community integration.  The argument they are making is that a fairly large staff associated with a fairly large group in congregate housing is best positioned to take people on regular outings into the community.

 

But regular outings in your self-contained group is not community integration;  it’s community tourism.

 

Community integration is relationships.  It is reciprocal, equal friendships, which are simply not possible with staff.  People need to be able to get out into the community with support workers and make human connections with people who have things in common with them, and to do that, they need their own, not shared workers.  They need to be able to connect one-on-one with the people in their communities, and to do that they need to be able to go out into the world on their own, without dragging four roommates along with them.

 

Judith Snow told a story about a 14-year-old boy named Peter, a young man who could not predict much about what was going to happen around him and who was beginning to understand that the world held few possibilities for him.  He was withdrawing.  Because his parents had the resources, they hired a support worker named David for him, and together the two of them began to explore their city, Toronto.

 

“There was some direction to their travels but not much. They created a list of friends’ homes to visit on a frequent basis. They tended to follow the subway line because David doesn’t drive. They often dropped in on coffee or doughnut shops or grocery stores because there their presence wouldn’t be remarkable and because Peter likes food. Here and there they found jobs that they could do for neighbours like sorting stuff or stowing boxes. Often they seemed to be just wandering.”

 

Together they looked for places for Peter to be.  They began to find people who would welcome him and to whom he responded.  They found an alternative school, where Peter participated in a mainstream sound poetry class.  And as Peter grew into a man, David supported him in making a community for himself.

 

When Peter was 17, he and David left the school, and Peter began to volunteer at various community organizations, and then joined a church, where his presence slowly affected the congregation and its approach to disabled people.  It began to actively work to prevent people from being forced into group homes and nursing homes.

 

“All this is the result in good part of the presence and participation of Peter,” wrote Snow, “a young man who has never spoken and who is labeled by health professionals as severely mentally r*****ed. Yet within the space of less than 6 years and while still in his teens Peter’s impact on his community rivals that of most mature, active, capable and able-bodied, adult citizens. Peter has been a poet, food handler, odd-job man, messenger, neighbourhood organizer, peace activist, community builder and evangelist. He has never acted alone but few successful people do. David and others have been key to every development, but the impetus has come from Peter.”  Reading Snow’s story, it is clear that the supports Peter’s family offered him have enabled him to have a meaningful, integrated and free social life despite significant communication difficulties.

 

Not only is community integration an emotional need, it is protective.  The more people who know you and care about you, the more likely someone is to notice that you are being harmed, and if you are, the more likely people are to take action to stop it.

 

What’s Next?

 

We know what good supports look likeWe do.  We need to put these supports in place for every person with a disability.  Every single one.

 

“The anxiety and fear that families feel for the future of their family member with developmental disabilities is real,” Amber Smock, who leads the Advocacy team at Access Living in Chicago told me, “and [it] should not be brushed aside.”  But she also pointed out that “pro-institution advocacy has taken away funding and attention that could have been invested in improving the community setting.”

 

In the absence of the strong supports in the community that funding and attention could have built, people are forced into institutions and are unable to leave all the time – the absolute opposite of good support.  That needs to change.  It’s time to reject the VOR approach to people with disabilities.  One step that is important right now is to pass the Disability Integration Act (D.I.A.) and get people out of institutions and into integrated, free settings – with supports – where their access to housing is not dependent on their acceptance of services they may not want.

 

Thank you.

 

People with disabilities exist throughout society.  If you are a nondisabled person, you still have disabled family members, friends, neighbours, classmates, and co-workers.  You meet people with disabilities in stores and at restaurants and in the public parks.  We could use everyone’s support on this one. 

 

Here is a longer Canadian film that addresses very clearly the experience of being institutionalized.

 

Here is TASH’s fact sheet on the D.I.A.

 

You can track the progress of the D.I.A. at this site.

 

Take action.

 

If your organization would like to support the Disability Integration Act, click here.

Stones

Mom has been drinking and sobbing beside you for hours now. When Dad left for 9 months, he took you aside and gave you two chores: keep the lawn mowed and don’t let your mother kill herself. You are almost certain this is the night she is going to die. For fourteen years this woman has been a mystery to you, a fact which proved no obstacle to her cementing herself in your heart. You have known your whole life that she was unhappy. You have known for five years that she drank more than was a good idea. But the weeks since your father gave you your orders have proved an education in exactly how great the obstacles are that she has to try to surmount.

 

Your mother’s mind is different from yours. It functions, as far as you can tell, much like almost everyone else’s. Yours — the one that makes sense — is a model that is unique in your lived experience. You have been dragging Mary MacCracken, Eleanor Craig, and, by the time you were eleven, Bruno Bettelheim home from the library just to make reflections, to create a sense that you are not alone in the world. All but one of your friends are imaginary. You have fantasized about the potential for community in segregated special ed, but your parents are adamant: you should just buck up and be normal.

 

So far you haven’t pulled it off. You have long ago realised you never will.

 

Mom cries.

 

You had not realised other people felt pain as deeply as you. They clearly do not feel the searing agony of light touch, the excruciating scrape of clothing, the burn of sunshine. And they seem incapable of understanding psychological pain. When you finally worked up the nerve to tell your mother of your own most recent suicide attempt, drunk on beer she had forced you to drink as a social lubricant, hoping against your knowledge that she would help, she said, “Ssshhhh, I’m watching M*A*S*H.” It was a commercial break halfway through a rerun. But here it is.

 

You have read in books about children who are loved and cherished. You have seen the way Mom is with your sister, the way Dad looks at your brother. You have fantasized about a life like that.

 

But you also know that people like you end up in institutions as adults. You cannot find a single representation of an adult who reminds you of yourself who lives free. And you have looked. There was one who got day passes…. You have been steeling yourself for the inevitable for half your life.

 

You think back to the first day at Red Hill Primary, your bladder straining, as you tried to determine what the other children were doing to attract Mrs. Sainsbury’s attention. She called on them and they asked to use the toilet. Why did she never call on you? What were they doing? As your socks became soggy, you had a sudden insight: this was it. This was why your parents looked at you like that. They wanted a child who just knew … the way everyone else’s child did.

 

Mom launches into another story. You concentrate, willing yourself to understand her, casting for details to help you help her.

 

You already knew your parents had met in the Dominican Republic, married in New York, conceived you on their wedding night and moved to Mexico City. You have already heard from Mom that she smoked and drank throughout the pregnancy to try to cope, that after your birth you were too demanding for her to get to the store for cigs, but that she had needed to drink more and more to cope with being the mother of a child who screamed when held, who refused to accept girlhood from the start, who was hospitalized until her milk dried up, who could not cope with a three-child playgroup, who broke bones and seemed not to be in pain but cried over nothing, who interpreted words oddly, who began running away as a pre-schooler, who seemed unafraid of abandonment at the library but refused to be left at the church creche.

 

Now you hear about the pregnancy. “There was another family with the name in the community,” Mom slurs. “They notified the wrong woman. I would have had an abortion … but everyone knew already.”

 

You pat her arm awkwardly, wondering whether this is true or just a backward projection of the intolerable pain of having a perfect blue-eyed, blonde-haired daughter, a handsome, charming brown-eyed, blond-haired son, and you. You do the inventory again: how young she was, how often she moved, losing her support system again and again, how early your father left for the office and how late he stayed, how you must be as alien to her as she is to you.

 

And yet you do not think that you are all that bad. You like the way you think, the way you solve problems, the way you carve up the world. At fourteen you have become involved in political organising, found a role you can play in a group. Unlike every other kid you know, you get no allowance; rather, you work for your pocket money — and at low wages, recognising that the families you work for are strapped. If you could grow up free, you think, you could be someone — even in this world of alien and hostile minds.

 

“It was the worst mistake of my life.”

 

She sobs.

 

You hold your body as tight as you can, trying not to let her see your reaction. You are not entirely sure she could, even if you began to scream, but you don’t want to take the chance.

 

The thing is, she’s right. Your relationship is not good, and even in 1981, in your parents’ community, you are tied to her like a weight.

 

You cannot be the kind of person she wants, and you know she cannot imagine a good life for herself if you are anyone else.

 

Can you fix it? If you tried again, and this time finished the job? You are not good at suicide. You first tried ten years earlier, after the second move, the second obliteration of your entire world. Your family is not a haven for you, and so every move — by now there have been nine — requires you to construct a universe from scratch. What if you ran again, and this time you never came back? Would that give her a good life?

 

But, no: it wouldn’t. She cares too much what the neighbors think. The people at her job, at her church, on her block, at the endless round of cocktail and dinner parties your father’s job require her to go to. For the rest of her life she would be That Woman Whose Kid Ran Away, even if no-one else so much as thought it, and it would be intolerable for her.

 

There is no way out for either of you. You cannot get away from your future; she cannot get away from your past.

 

She is still sobbing.

 

And in that moment, you see it: she should have killed her kid. At birth, in the first month, when you were still small enough for a pillow to do no bruising, and the neighbors would have thought it was a tragedy. You would have missed out — on so, so much — but it would have been the best thing for her. She should have killed her kid.

 

You are almost a decade from learning that, in her own inept way, she tried.

 

***

 

The next year, “St. Elsewhere” runs an episode that hits much too close to home. A family learns they are about to have a longed-for boy. He is going to have Down Syndrome. The doctor talks about the prenatal test as if it’s certain, which you know it isn’t, and then begins to make horrible predictions. The future of a child abandoned at birth and growing up in an institution like Willowbrook, Pennhurst or Beatrice is described as though it were the future of a child raised in a loving home, given a free and appropriate public education. The mother wants to raise the boy; the father suggests they get a pet instead. They choose abortion.

 

The show is defended on the grounds that, while it is inaccurate, it is at least compelling television. You know better. It’s pity porn playing to prejudice and contempt … which all those people with the wrong kind of brains spin as compassion.

 

Meanwhile, the self-advocacy movement, with its roots in Sweden in the sixties, is building. People once crowded in filth, decay, neglect, abuse and exploitation are planning conferences, talking to the media, and convincing elected officials to support smaller more integrated institutional settings like group homes.

 

Jason Kingsley and Mitchell Levitz are boys with Down Syndrome growing up in the free world. As young men, they will write “Count Us In,” a book that changes everything for so many. Their lives look nothing like the one described on “St. Elsewhere.”

 

By 2017, you will sit and watch Charlotte Fien, a poised young woman with Down Syndrome, address the United Nations. And yet the moment will be bittersweet: her topic will be the use of new technology to eradicate people with Down Syndrome through targeted abortion. “I have an extra chromosome,” she will say and so what?

 

People very similar to yourself are coming together, too, outside institutions, building community, seeing themselves reflected in one another, reveling in it. You begin to see children whose parents can name what is different about them, support and celebrate them. You begin to hear jokes you understand.

 

People are mastering communication systems, getting jobs, getting advanced degrees, raising families and documenting it all. If you were fourteen today it would be easy to imagine alternatives to the institutions you spent years in. The failure of imagination that led you to discount the value of your life is washed away.

 

But your Mom’s culture of devaluation and death continues.

 

Abortion isn’t an option for kids like you. People don’t know in advance. So they turn to murder.

 

For you the tipping point comes when six-year-old Charles-Antoine Blais is drowned in a bathtub and parents come together to support his murderer, his mother. She is offered a job at a charity supposedly supporting kids like him. When Michelle Dawson calls to ask what that is about, she is told children like Charles-Antoine ruin their parents’ lives.

 

A major disability charity releases a video normalizing disability filicide, and you are furious. Alex Spourdalakis is fourteen when his mother and grandmother murder him. Issy Stapleton is fourteen when her mother tries to murder her. It hits home.

 

In 2014, Julia Bascom, from the Autistic Self-Advocacy Network, reports that when reading a list of names of disabled people murdered by parents, she “could have sworn time stopped; we read down one poster, and then another, and every time I thought we were done, there were more names.” Many of the killers are praised to high heaven all over the place and given token punishments. After all, they have suffered so much already from their children’s existence.

 

***

 

Dahlia, the woman on the bed beside you has been restless and groaning in pain for hours now. She’s asleep or unconscious — you’re not sure which — but she is not at peace. She writhes slowly. Her breathing is uneven. Sometimes it stops for 45 seconds or more. Her catheter bag is empty: no urine has collected in about eight hours. You know this is the night Dahlia is going to die. The hospice nurse had snapped it at you when you called to ask if you could administer more morphine. “What did you expect?” she had asked. “Her kidneys are shutting down. It’s painful. This is how they die.”

 

You are the only one awake in the group home, where women with physical and intellectual disabilities live. Another staff person, this one making a little less than you, just under minimum wage, is sleeping in the back.

 

You are okay with Dahlia dying. She has been dying since you met her. You are not okay with it happening like this. Not suffering. But you don’t know what to do. You don’t want to touch her; you are afraid of inadvertently hurting her more. And your singing voice is no comfort to anyone. So you begin to speak. Whatever comes to mind, just so she knows she’s not alone.

 

You talk about how good it has been to get to know her. You talk about how glad you are that the staff at the home have come together to support her. Group homes are small institutions; they can be as soul-deadening as any other and because of small staffs and high turnover they can go from good to awful seemingly overnight. But you think this staff has done this one thing well.

 

You talk about what you know of Dahlia’s life, of her friends. As an overnight worker you never meet them but you see their names in the log. When was Dahlia placed in the state institution? You aren’t sure. Childhood, definitely: she has the taste for congregate living that comes from growing up in overcrowded cottages. She wouldn’t want to have her own apartment.

 

You tell Dahlia that it is okay to let go. A part of you hopes she does. All you can imagine in her future is pain. A part of you holds out for it not happening this way. But you cannot imagine a future for her other than suffering and death. Your mother’s voice scratches at your mind. Wouldn’t the kindest thing to do be to kill her?

 

Anne calls from down the hall. You tell Dahlia you will be back.

 

Generally you try to take your time with Anne. She is the sort of person you would enjoy being friends with, if you knew her on the outside. And she has been particularly badly served here: she grew up in a family and doesn’t have the automatic deference that even the good staff seem to expect — quite the opposite. When she got to her first, crisis placement group home, she could walk with a walker part-time, but the staff found her annoying and they took the walker as a surreptitious form of restraint. She atrophied. Now she can barely stand to transfer.

 

So usually the two of you go slowly and gently. But tonight you tell her Dahlia is having a hard time and together you hustle her into her wheelchair, onto the toilet and back to bed. Her eyes are teary. You know she is terrified of Dahlia’s coming death. You promise to do everything you can.

 

Back in Dahlia’s room, though, you don’t know what that might be. She seems worse, rolling back and forth on the bed, making sounds. And finally, in desperation, just to be doing something, you begin to take apart the catheter setup as if to empty the already-dry bag.

 

Then you see it.

 

Whoever did this chore last left a cap on a tube. That tube slides into the end of another one; the cap is invisible until the tubes are separated. But Dahlia has been making urine all evening and night, and has been unable to drain it from her bladder. That’s the pain.

 

You pull the cap and jam the tubes back together before too much liquid spills out, and you watch the collection bag begin to fill. You empty it; it fills again.

 

Slowly, as dawn comes, Dahlia drifts into peaceful sleep.

 

At a staff meeting, people question whether you should have left the cap on.  It wouldn’t have taken much longer.

 

When the end comes, weeks afterward, it is on someone else’s shift, a few minutes after Dahlia is told she is being sent back to the hospital, a place she does not want to go.  You understand that you made the right choice.

 

***

 

Years later, you read a column in the newspaper about a man who, faced with his beloved son’s short life, a life without the things the man seems to feel give his own life meaning, holds him while he dies, then struggles with the growing conviction that he should have killed his kid.

 

It does not persuade you.

 

There is more to life than breathing easily.  There is also being held by a father who loves you enough to be there with you in your pain, even as his own is unbearable.

 

Too often, you have learned that your beliefs about what makes a life worth living are not trustworthy. Sometimes they are right, and you never get what you need. Sometimes they are wrong, and you learn new ways to live.

 

 

You realise for the first time that your Mom, all those years ago, was wrong. Even if you leave aside your own experience, your own hunger for a life, and even if you accept that you represent the greatest mistake of her life, you realise, you realise that her mistake consisted not in failing to embrace your death, but in failing to free you from her insistence that life has to follow a specific path to be worth living and set you free to explore the possibility of your life.

 

She couldn’t have given you everything you needed or much of what you wanted. She didn’t have it to give. But the insistence that if your life didn’t fit a certain pattern it was not worth enduring … she could have chosen not to give you that.

 

Just because you cannot imagine how a particular life can be good doesn’t mean there isn’t a way.

 

It might still have been bad. Life often is. And you would certainly have suffered from the strain of being isolated among people whose minds are alien to you. But it wouldn’t have been worse to have a parent who was open to possibility; and as you think back to the recent wedding photos of two people whom Mom would have equally hated being saddled with, the beaming guests, the wedding party at a ball pit, you think to yourself, it might have been amazing.

Mike Pence

I can see gods today.

Not in gilded dining rooms
and marble corridors.

But in the parks,
sweat-drenched and open-faced, arguing;
and in the streets,
harrying daughters past the leers;
and in the schools,
tearful, under a teacher’s body,
mouthing, “Let me go.”

I can see the god of hands:
flapping in joy,
dancing full of language,
poring over six-dot cells of knowledge,
easing joysticks across broken sidewalks,
torn between frustrated teeth,
cracked and callused and sore,
dowsing for love on screens,
flipping tables, throwing chairs,
juddering to a rhythm of the nerves,
loose and still,
knotted,
contracted,
balled into fists,
wrapped around guns
that turn out to be trinkets,
bruised,
bloodied,
wet with tears.

I can see holiness
in the rising,
in the sharing,
in the reaching out to one another
against rejection,
in the demand
for freedom, food and futures,
even as your forces array against it.

I can see your god crucified:
barbs cascading over them,
as they stand clutching beltless pants,
vacant eyelets in their shoes,
greasy and swaying;
mascara on her cheeks,
arms held outstretched by leather cuffs,
she labours to breathe,
to stay awake
as the shot closes in on her brain;
scars upon scars,
darkened gauze over his side,
a shackled wrist,
his sulphured clothes in evidence bags,
a guard outside the door.
Can you not see your god?

I can see your god in anguished triumph,
resurrecting from the bed each evening,
tracks and all,
and going out to try one more time
to make a life
before dying.

But not in gilded dining rooms
or marble corridors;
not in perfumed, manicured bodies
honed in home gyms;
not in silk ties and tailored suits
or moisturized hands
gripping pens,
signing away millions’ freedom
with a swathe of ink.
I cannot see your god
in boasts of power and piety.
I see only you.

Give me instead the bodies bouncing off floors,
the half tooth in the quiet room drain,
the wail of a figure holding a limp child
outside the locked emergency room.
I would rather look away.
Still,
give me not people trumpeting their godliness,
but give me people inhabited by gods.

Because Medicaid is Investment in Freedom

People are asking why disabled people are suddenly protesting. It’s not new. The disability rights movement grew out of other movements of people labelled “unable” so it’s hard to date its beginning, but it was well underway at least by the Congress of Milan nearly 140 years ago, when hearing people decided that to be equal you needed to speak and to understand speech and set about stamping out Deaf language and culture.  Although a great many Deaf people reject the label “disabled” that many other groups accept and even take pride in, their critique of “ability” is echoed by every other strand of the movement.

But I’ll tell you why disabled people are protesting right now.  It’s because Medicaid is an investment in freedom.

Filmmaker and activist Dominick Evans said this morning, “I am terrified of the health care bill…. I don’t want to die. I don’t want to end up in a nursing home.”  And he’s right. That’s exactly what he’s facing if it goes through.

~~~

Ironically, the season when we celebrate freedom is upon us. Two weeks ago we celebrated the notification to the last officially sanctioned slaves in the Union that slavery had been abolished.  In three weeks we will celebrate President Bush’s affirmation that disabled Americans have a rightful place in society. There is red, white and blue everywhere; there are picnics and parades and rainbow flags and everywhere we are saying: freedom! freedom! freedom! And yet our Republican national “leaders” are in the middle of a devastating attack on freedom and opportunity.  If they succeed, Americans will lose their health and their savings and their lives; parents will lose their children and children their futures; young people will lose their educations and their mentors; adults will lose their jobs and their homes and their peace of mind; that cherished dream of life, liberty and the pursuit of happiness will be snatched away from millions. Democratically elected legislators demanded that their constituents be represented, and Mitch McConnell and his gang said no.

Americans demanded a voice, clogged the switchboards and filled the voicemails insisting on being heard, wrote letters, signed petitions, marched, prayed, told their stories, and were sneered at by Kellyanne Conway and her crowd.  The Republicans campaigned on the need for more jobs; now they say there are so many jobs with great pay and awesome benefits that everyone can have one. They campaigned on cutting insurance premiums; now they are telling us their plan is to raise premiums on those who can least afford it and cut benefits for everyone.   And they are going after Medicaid, one of the greatest investments in freedom and opportunity this country has ever known.

~~~

In America today, some babies are born to parents who can afford to pay for their routine medical care so they can grow up healthy — and there is Medicaid to give other babies a chance.  Some children grow up in families that can care for them — and foster kids get Medicaid.  Some kids go to schools where the school boards can afford to meet their education-related needs — and some get help from Medicaid.  Some people have access to bathrooms and bedrooms and kitchens they can use without help — and some use Medicaid so they can hold down jobs, pay taxes, raise families and live good lives.  Some people can afford preventive health care so they don’t land in the emergency department with outrageously expensive emergency needs (that we all end up paying for) — and some use Medicaid.  Some people have good insurance or huge bank accounts when cancer or stroke or a car crash hits their family — and some turn to Medicaid.   People in America work hard. They deserve freedom and opportunity — all of them, not just a lucky few.  Some combine their hard work with luck, and some combine it with Medicaid.

~~~

So when the Republican leadership introduce the AHCA and the BCRA, they are trying to cut investments in freedom and opportunity.   For many Americans, it’s a numbers game. The destruction of a life, a family, imprisonment in an institution, the death of a child, it could happen to anyone.  It’s not very likely if you were born to privilege, but remember that President Roosevelt was born wealthy.  It’s a good deal more likely to happen if you’re an average college-educated working person with a full-time salaried position, more likely yet if you work two or three low-wage jobs.  But for disabled people this is more personal than it is for many others, because so many of us can name friends and loved ones who are likely to lose their jobs, their homes, their kids, their freedom and their lives.

That’s why there were protestors dragged out of Senator Mitch McConnell’s DC office, why an ambulance took a leader away from Senator Todd Young’s Indianapolis office, why a woman at Senator Cory Gardner’s Denver office did not resist as police experimented with her ventilator tubes, why people showed up at Senator Ted Cruz’s Houston office furious that he refused to even listen to them.  Because in this time to celebrate freedom, freedom is under attack, and Americans with and without disabilities are fighting back and calling on elected officials to do the same.  We asked nicely.  Asking didn’t work. We explained.  Explaining didn’t work.  Freedom is important: it’s time to insist.

~~~

This is a struggle for freedom.  Nothing less. Disabled people — like everyone else — have a right to life, liberty and the pursuit of happiness.  We are a movement with many strands, but we are all saying some of the same things:

 

  1. We all have things we can and cannot do — like everyone else — but we are all able to be valuable members of society. First and foremost we are people — like everyone else – and any inabilities we may have do not detract from our humanity – just like everyone else. Many of us reject the idea that they are any more unable than anyone else “Deaf people can do anything hearing people can do, except hear,” I. King Jordan said; Jacobus TenBroek reported, “Every time I think I have hit on some job that a blind man couldn’t conceivably hold, I find a blind man holding it.”   Others accept that there is a range of ability and place themselves toward the end of the spectrum. Personally, I look at 41-time Paralympics gold medallist swimmer Trischa Zorn, 23-time Olympics gold medallist swimmer Michael Phelps, and my neighbour Fred who likes to hang out down by the lake in his swim trunks.  I have a hard time seeing Zorn as the least able of the three just because she is blind.

 

We have the right to life:

 

  1. We have the right to survive. In a society with the knowledge and resources to provide health care to everyone, we have a right to life-preserving and independence-enabling health care. “The lives of disabled people are already devalued,” says Anita Cameron, but they can be good lives and we deserve a chance to live them.  Amy Schnelle, a former factory worker, died because she couldn’t afford the meds that stopped her seizures.  Mother Esmin Green died in a hospital waiting room from blood clots more than 24 hours after she was admitted, waiting  Medicaid provides that access to health care that is required for life to many people; Medicaid is freedom to live.

 

  1. We have the right to define ourselves, to have and express our own ideas and values. This is in the First Amendment to the Constitution. We have a right not to be forced to behave as if we were nondisabled, as Deaf people have been pressured to function as if they were hearing and autistic people have been pressure to behave as if they had typical neurologies. We have a right neither to be herded together in segregation nor to be dispersed into isolation within the larger community. We have a right to self-determination, to choose the course of our own lives, where we will live, how we will spend our time, and in whose company, to the same extent as others. Medicaid allows many disabled and chronically ill and severely ill people the chance to move beyond worrying about merely waking up the next morning and to worry about what kind of people to be; Medicaid is freedom of thought.

 

We have the right to liberty:

 

  1. We have a right to freedom from institutions. We have the right to avoid being outright coerced by courts and laws, as some people with psychiatric labels are, and we have the right to avoid being trapped because services we need are only available to us in institutions. People with intellectual and developmental disabilities have been forced into places like Willowbrook and Pennhurst and into group homes, people with psych labels have been forced into state hospitals, and people with physical disabilities and chronic illnesses have been forced into nursing homes.  “Are you in charge or is the staff in charge?” asked Roland Johnson, a Pennhurst survivor, calling for services that enable people to choose how they want to live — just like everyone else. Retiree and homeowner Chris Meadows is facing institutionalization for exactly this reason. Medicaid waivers help many people at risk of institutionalization stay out, or at least stay in more geographically integrated, smaller, more “home-like” facilities — but the waiting lists are enormous; Medicaid is freedom from unjust imprisonment.

 

  1. We have the right to access society, to things like being in spaces we can enter and having information in accessible formats and having housing and education and employment. These things allow us to be fully functioning members of society. They enable us to go to the supermarket and the movies. President Bush signed legislation that provided an enormous step forward.  But to do use it we often need specialized equipment like wheelchairs and communication devices. Harvard students are trying to get James Lappin, a man in their community, an electric wheelchair he needs, but many people don’t know anyone with the resources to help. Medicaid helps with that; Medicaid is freedom of opportunity.

 

We have the right to the pursuit of happiness:

 

  1. We have the right to supports. Americans believe in rugged individualism, but it’s a myth. To get dressed this morning I depended on other people to grow and harvest cotton, process it into thread, and dye and weave it. I depended on others to design and manufacture garments and to build ships and roads and trucks and an internet so I could get the clothes. I depended on an enormous number of people to help me get dressed, and so did everyone else — but we treat all this as invisible. If a person needs one more bit of help slipping a shirt over their head, that is considered dependence. It is no more dependence than anyone else — but for many people, that one need is enough to result in a loss of freedom; for communities, it can result in the loss of a valued member. Medicaid pays for assistance in dressing and eating; Medicaid is supports for freedom. 

 

  1. Education is one of the most fundamental supports that every American child is owed, and Medicaid pays for many things disabled children need in order to benefit from the public education they are guaranteed, so they can live and work and participate as adults. The prospects for kids with Down Syndrome were lousy 35 years ago: lifelong institutionalization and early death were the norm. Today, simply because kids with Down Syndrome grow up in families, communities and schools, adults with Down Syndrome graduate from high school, get jobs and pay taxes. Some go to college. Charlotte Fien addressed the United Nations about human rights earlier this year. “I have a good life,” she said, describing a pretty typical young adult’s existence.  Without Medicaid, these costs would be the problem of individual school districts, many of which are already struggling to meet the needs of the children in their care today; Medicaid is freedom for today and tomorrow.

 

  1. We have the right to inclusion, to be considered part of society, to have out needs taken into account — just like everyone else. Most disabled Americans can and want to work, but we face discrimination in jobs. Many of us do have jobs, and many others contribute to their families and communities without getting paid, or get sub-minimum paycheques for pennies an hour. “Get a job!” they tell us.  Many of us have jobs, and many more are trying to get them, but we face employers wo mistakenly think of us as unable, just as many hardworking nondisabled people struggle to find work. Moreover, children too young to work, people who want to work and cannot find jobs, those who have worked their whole lives and have had to retire, and those who cannot work at all should not be excluded from the community. Medicaid is a safety net for desperate people, disabled and nondisabled, who cannot get paycheques for some reason. Medicaid is freedom to belong.  

 

These are the disability rights various groups disabled Americans and our families and allies have struggled for, fighting against oppression in the name of “ability.”  We have not come close to winning, but we have made real progress over the years.  (After her arrest, Denver protester Carrie Ann Lucas was transported by police on a lift-equipped bus, something that her group, Atlantis ADAPT, fought for and won decades ago.)  We are determined; and we are not prepared to allow Ryan and McConnell to roll back the clock and hurl us even further from the ideals Americans will celebrate this week.

If America is serious about the rights to life, liberty and the pursuit of happiness being at the very core of our humanity – as we will be hearing over the next few days – then that means disabled people and working people, too. If America isn’t serious — well, it should be.

And one of the fundamental ways that life, liberty and the pursuit of happiness are being provided to disabled and working Americans right now is Medicaid.

It doesn’t have to be that way. We could invest in freedom and opportunity some other way. Or we could make most of the costs of enabling disabled people invisible, as the costs of enabling people who were born to privilege are invisible, by addressing the problems in society that ensure that some of us have the tools to succeed and many others don’t. There are certainly other ways of doing things that we are open to looking at. But we will not abandon our demand for freedom.  And because right now, today, we live in a society that is set up to meet the needs of some people and not others, we need a system to invest in the freedom of those people whose needs are not met. For disabled people and the working poor and anyone who may become disabled, which is every single person, today the system that invests in freedom and opportunity is Medicaid.  That’s why disabled activists are in the news.

~~~

I’m not a Medicaid user now. I don’t need it right now. But if and when the day comes that I do, it should be there. It should be there for those who do need it.  I have been denied needed medical care. I have been brutalized in efforts to force me to act as if I were nondisabled. I have been institutionalized. I have been denied access to basic things. I have gone without needed supports. And I have been denied a meaningful place in society. It should not have happened to me. It should not happen to others. And the Republican leadership should not be preparing for another assault on freedom and opportunity when they return to Washington after the recess – but they are.

Happy Independence Day and thank you to everyone who has spoken up for disability rights and other civil and human rights since the introduction of the House and Senate anti-freedom bills.

YOU CAN MAKE A DIFFERENCE.  HERE’S HOW: 

  1. Sign up for and act on action alerts from Access Living or another group.
  2. Call your Senators to let them know you stand for no cuts, no caps on Medicaid and you expect them to support investing in freedom, too.
  3. If you have Republican Senators, call your Governor to demand that they support investing in freedom.
  4. Educate the people around you who don’t understand why it’s so important to keep Medicaid intact.
  5. Donate to or join ADAPT.

 

 

 

Senator Young, Please Oppose the Bill

Today disabled people are calling on Senator Todd Young of Indiana to ask him to oppose the health care bill. I sent him this letter.

If you would like to let Senator Young know what you think, you can reach him here: http://www.toddyoung.org/contact

 

Dear Senator Todd Young,

     Please oppose the Senate health care bill.
     If it becomes law, millions of Americans will lose health coverage because it will be priced out of their reach.  The CBO predicted 23,000,000 under the House bill, and the Senate bill is worse.  This will result in thousands of preventable deaths in the near future … deaths like Amy Schnelle’s. Amy Schnelle was 15 when she began to have seizures. She finished school and went to work in a factory, but she continued to have debilitating seizures, and eventually she couldn’t work any more. She went on Medicare. After 15 years of seizures — half her life — she got them under control. So she was removed from the Medicare rolls. She tried to work with the drug companies and several did help her, but one did not, and she began to have seizures again. She went to her Congressman and he helped her get back on Medicare, but she died following a seizure before the meds got her condition back under control. Please oppose the bill to prevent what happened to Amy Schnelle from happening to your constituents.
     If it becomes law, it will be even harder for many Americans to get out and stay out of institutions. Geraldo Rivera uncovered what was going on at Willowbrook State School back in the 1970’s, and Willowbrook was not an aberration. Institutions are notoriously understaffed, the employees are underpaid, and the lives of people in them are run according to the needs of the administration. At Willowbrook, for instance, because there were so few staff, children who could not feed themselves had food poured into their mouths at a rate of 3 minutes per child per meal. This resulted in several deaths from choking and aspiration pneumonia every month.  Please oppose the bill to prevent what happened to the children of Willowbrook from happening again.
     Nursing home residents struggle to cope with poor staffing and lack of resources as well: I was in nursing homes this winter, ones the hospital said were good. I was in one to get physical rehab so I could get strong enough to return home and care for myself. “You can have as much therapy as you can tolerate,” one assured me, but physical therapy was capped at 3 20-minute sessions a week. I atrophied. In another, my roommate, a neighbour from Chicago’s South Side whose son, a professional, visited her every day, was confused for hours until I realised the staff hadn’t noticed she was blind. I had been admitted specifically to certain places because I needed lymphedema care, but none of the facilities I was in had the staff or supplies to provide it, and I ended up back in the ER twice as a result.  Please protect your constituents from what is happening to the elderly of Chicago’s South Side by opposing this bill.
     And that is when everything is going “right.” A distressing number of Indiana nursing home employees posted images of patient abuse on Snapchat in 2016.  How many more cases were never discovered? Esmin Green died of blood clots after she had been admitted to a health care facility but waiting for a bed, writhing in front of a surveillance camera while nobody noticed. Just recently another abuse case was exposed at the Judge Rotenberg Center, where staff had been abusing a disabled resident — this at a facility where repeated electric shocks are standard operating prosecute. Disabled Americans have fought to get out and stay out of institutions in order to live good lives, go to school, hold jobs, raise families, pay taxes, and contribute to our communities — and it is cheaper per person to support people in their own homes to institutionalize them, but states prefer institutional options.  Michigan employee and homeowner Chris Meadows just learned that the Medicaid services he needs to stay free have been cut. He has lived on his own since college. I personally know many disabled people who have good lives and who make their communities better places because they have services through Medicaid. Please oppose the bill to prevent what is happening to Chris Meadows from happening to your constituents.
     In the last 35 years or so, IQ scores for people with Down Syndrome have gone up 20 points and they are living decades longer.  Today Americans with Down Syndrome are doing all the things other Americans do. This is not due to changes in people with Down Syndrome or to medical developments: it’s due to people getting food services in the community rather than being institutionalized.  Please help disabled Americans continue to make these gains by opposing the bill.
     If it becomes law, many people will not even be able to stay in nursing homes.  They will go home, where their families, already struggling, will be unable to care for them.  This is already happening; as older Americans and those with pre-existing conditions face higher premiums they will be forced out of the health care sytem.  Joey Bishop was 18 when he died. He had muscular dystrophy, as do many leaders in my community.  But Bishop lived with a family that did not care for him. Bedsores are largely preventable and treatable, but Bishop’s were not treated and he developed infections and became septic … and died.  Although his family is charged with deliberate neglect the same thing will happen to many of your constituents if this bill becomes law. Please oppose it.
     If it becomes law, children with disabilities will lose access to the supports in school they need to reach their full potential. Developmental windows will close. An easy place to see the consequences of lack of education is in the Deaf community. Many deaf children today in oral programs never fully master any language at all because they do not learn one in the critical language-learning phase — because they are denied access to sign. Blind children who are not taught Braille often never learn to read as well as they should; it cannot be learned as easily in adulthood. Without the supports Medicaid provides to schoolchildren a large number of the current generation will be unnecessarily limited for the rest of their lives.  Please protect your constituents’ children and your state’s future and oppose the law.
     If it becomes law, people who want to get off drugs, people like Rush Limbaugh and high school athletes who have been prescribed painkillers and my own mother and grandparents, will have an even harder time finding treatment. They will suffer and die, and their family members will suffer. The nature of addiction is that willpower is not enough. Please do not abandon these desperate people. Please oppose the bill.
     The ACA is not perfect and there are legitimate political disagreements between you and me over how best to govern this country. I understand you are going to do things I disagree with because you believe in them and I respect that. But this is different: the suffering and death and devastation that the bill you are now considering will rain down on the 10% of uninstitutionalized Americans with severe disabilities — a community any American could join at any moment through no choice of their own but from accident, illness, age or act of God — not to mention the entire institutionalized population are unimaginable. If it becomes law, it will hurt and kill people. Millions of people. It will impoverish families for the crime of a baby being born with a heart condition or a child getting leukaemia or a parent being injured at work or a grandparent developing Alzheimer’s.  It will drive people to suicide, as Oregonians who cannot afford cancer meds are choosing suicide today. Please, please do not do this to America.  Please do what is right for your people this week and oppose the health care bill.
Sincerely,
Cal Montgomery