The First Tendrils of Communication

For Mel Baggs and Phil Smith, who knew, and know, communion with the wild places better than I can imagine.

Do you remember how you learned to communicate? If you communicate pretty typically, odds are it wasn’t perfect, but it included something like: you reached out socially, and people reached back.

You looked at them; they gazed adoringly back at you.

You smiled; they smiled back and waved. “Hi, Baby! Hi! Oh, what a beautiful face!”

You laughed; they reveled in your chortles and giggles and were silly in the hope that you would laugh again.

You cried; they held you and comforted you and tried to figure out what was making you miserable.

You called out at night; they pulled themselves out of exhausted slumber, scooped you up, and blearily cuddled and fed you.

You made a sound or a gesture, an approximation of standard meaning — or they convinced themselves of that, anyway — they pounced on that and talked back to you. “That’s right! Ma-ma! You know who your mama is! Can you say it again?”

They celebrated your efforts to engage, amplified them, reflected them, and worked to understand them.

The first tendrils of what would eventually grow to be a robust, redundant, and resilient communication system peeked out of you, questing for the sun of human connection and they, who reveled in what developed, with consummate faith in the richness of the soil those tendrils came from, watered and fertilized them; and between you, the communication system bloomed and blossomed into a strong and supple living thing.

You were human: the development of an adaptive and functional communication system was a drive. Once you knew how to communicate with people close by, those who knew you best, you gradually became better and better at communicating with others.

Through communication, you developed — to a greater or lesser degree — the ability to connect with others. And because you were human that, too, was a drive. It probably has been thwarted to at least some extent, just as there are people among whom you feel unheard, or who make you feel unable to understand. But also, you know you can.

Or maybe it wasn’t so easy or so joyous. Maybe the soil was too thin, or the rain too sparse, or the sunlight too filtered. Maybe those who should have nurtured you did not, for reasons within or beyond their control. Maybe the communication system grew slowly. Maybe it bore the signs of hard growth. But again, if you communicate pretty typically, then probably, between whatever you did have and human instinct, those hardy tendrils, doggedly found a way. Communication, connection, after all, is a human drive, and you were, you are, human.

And sure, there are times when you feel lonely, and times when you struggle to express what you want to say, when the living thing between you and others seems battered and bedraggled, beset by drought, but the fundamental ability to engage in human give-and-take is there, waiting, like a cactus, for the rare and precious rain.

But now imagine if your reaching-out is misunderstood or unnoticed, if it is ignored or even discouraged. Imagine if, instead of being showered, or at least drizzled, with nutrients, it is sprayed with pesticide, or even torn out at the roots. Imagine if someone else, like a landscaper who has been educated by those who cultivate formal gardens, decides how you should communucate, and then enforces that decision, stamping out whatever errant shoots creep out of you, and which she sees as weeds. Imagine if your communication system, instead of growing in fertile ground, is constructed in a lab and forcibly buried in you in place of what was already growing but fervently opposed. Imagine if your efforts to communicate and connect — because it is all one thing — elicit not excited reciprocity but measurement, evaluation, strict weeding, and control.

I’m not saying text-based AAC is better than grid-based. I’m not saying any kind of chunk of a communication system is better than any other kind of chunk. I’m not saying to push for that instead of this. I’m saying that a communication system must be one that takes root in the ground where it will live, and that allows for the fullest expression possible of what the ground already contains.

As much as I completely understand the terror a parent feels when they look into the future and cannot imagine what communication is going to look like, as much as I completely understand the hope that a professional seems to offer, who has with a system for forcing the approximation of that which the parent has come to expect natural growth to look like, it’s the wrong choice.

A fear-and-control-based approach to human connection is wrong. You can’t make connection that way. It has to be organic. And yes, there is a time to prune, a time to tell your child not to comment on other people’s bodies, a time to coach your teen in the art of the handshake rather than the hug, a time to mark the trails that those who are welcomed in will follow, but the more tender the shoots of the communication system, the riskier that pruning is.

I am saying when you plan in advance how someone else will communicate, you plan what they will communicate, and then it ceases to be communication. When you enforce a particular way of communication and relentlessly prune anything that does not meet your standards, then what should have become, perhaps, a powerful redwood is trained into a bonsai instead; and a bonsai, however artistically presented, cannot do the work of a tree that has grown as its own nature commanded it. What should have been, perhaps, sorrel, harassed by the controlling landscaper because it is not the violets she wishes it to be, will have leaves so damaged that they cannot absorb the sunshine of connection. And when the landscaper beams at the parents and proclaims, “Nothing worthwhile would have grown here without my efforts, so celebrate this withered stem I have coaxed from earth that was once overrun by weeds!” it is cause for grief, not gratitude.

You may have wanted tulips, and by all means, bury a bulb or two and see what comes up in the Spring, but if the absence of tulips is all that you can think about, you may miss the sweetness of honeysuckle.

I Will Celebrate ADA30

The ADA represents a shining promise: that never again will someone’s disability be used as an excuse to deny them full participation in their communities. As such, it is a piece of the bigger promise: of a society in which who we are is never weaponised against us.

But the ADA represents a hollow promise. It was never meant for all of us. It was always intended to protect some disabled more than others, and still other disabled not at all. And the independent living movement, which plays an enormous role in cross-disability agenda setting, has focused on the kind of “one and done” accessibility that is coded into the ADA Accessibility Guidelines (ADAAG) (and even then only some people’s “one and done” needs are addressed) rather than the ongoing work of negotiating the fluctuating and complex access needs of individuals, groups, and communities.

The question, then, for those of us disenfranchised within the disability community in one or more ways, as we approach ADA30, is what to do about the discrepancy between that shining promise and the tawdry refusal to take it seriously on the part of much of our leadership.

Do we continue to call on them, after decades of betrayal, to finally live up to their stated values? Or do we accept that decades of treating some community members as people who do not deserve full participation in our society is an expression of their real values, and refuse to cooperate further with them?

I do not ordinarily participate in the ADA commemorative events. I am trans, queer, and autistic. I have a low IQ score. I come from a family with an intergenerational history of substance abuse. I have been nonspeaking much of my adult life, and am partially speaking now. I am a SIBber and a psych survivor. I am under no impression that the ADA was meant for me, and if I ever had been, I have sat through enough lectures from framers to have been disabused of that heady notion. When I fought alongside the white crips who were horrified that passage of HR 620 in the last Congress might mean that they had to wait a few months for access, they did not turn around and agree that I should not have to wait for decades. I did not expect them to. They took their victory and continued to see me and my subcommunity and other subcommunities as undeserving of what is nonnegotiable for them. It was still the right thing for me to do, to fight the attack on what we have built; the right thing for them to do would have been to finally agree that what is nonnegotiable for them cannot be unimaginable for us.

I can acknowledge the effort the Eds and Judys and Justins and Evans put in; I can acknowledge their substantial achievements; I can admire and even love them as people. But I cannot ignore the relative privilege that permitted them the opportunities they used so well, and I cannot overlook that a movement they had so much influence over excluded so many from making any contribution, erased so many who did make a contribution, and continues to do so.

I believe in the promise of the ADA. I believe in the promise of justice for all marginalized groups. I believe we can get there. But I also believe it will take not just hard work and commitment, but revolutionary change within our movement (I will not presume to suggest I know what other movements need to do). So I will not mark ADA30 by celebrating the glorious history of white wheelchair users. We celebrate that glorious history every day, and too few of us peek behind the curtain.

I will, instead, celebrate the movement that Brad Lomax tried to build, the one that Bernard Carabello devoted his career to, the one Lois Curtis should have inspired, the one that incorporated Roland Johnson’s insights, the one that took seriously Mel Baggs’ ethical efforts. I will celebrate a movement in which I am neither more nor less human than the next person on the line, in which residents of no one institutional system take priority while residents of others languish, abandoned to their fates, and that therefore has the moral force to demand that the larger society remake itself in a similar way. I will celebrate ADA30 by celebrating the shining promise of a just future, and the dream of a movement that can deliver that promise to us — and then I will return to the tawdry reality and continue to try to build toward the dream by creating the movement that the Brads and Bernards and Loises and Rolands and Mels of today are working toward. And I will hope that the excellence of these activists and advocates will overcome the mediocrity of the movement they are inheriting. I have met some of these activists and advocates. There is reason to hope.

I hope that, however you choose to celebrate ADA30, it is a good celebration and that it nourishes you as you recommit to the long struggle toward a just world.

Why We Need to Get People Out of Congregate Care

There is a highly successful program called Money Follows the Person, which helps transition people from large institutions to home and community-based settings. The multiyear authorization expired and Congress is only trickling money into it to barely keep it going but the data show the value of getting people out of big facilities and back into small community-based facilities (which are still congregate and not enough) or their own homes.

Living in a congregate (grouped) setting is a rough life at the best of times, even with skilled, caring staff doing their best, because the realities of mass-produced care force restrictions on personal liberties, self-determination, community integratiom, and so on. And at worst, we get truly horrific outcomes, rife with abuse and neglect.

Lois Curtis, for instance, who went to the Supreme Court for us as the lead plaintiff in the Olmstead case 21 years ago, has talked about what winning her case and getting out has meant to her.

The memoir of disability rights leader Roland Johnson, who grew up in the infamous Pennhurst, is also powerful.

There’s a film about some Canadians’ efforts to free themselves from congregate settings, called Hope Is Not a Plan, that I strongly recommend.

I have done time long-term in the psych system and short-term in the nursing facility system, and I’ve worked in the DD system. I’ve got experience with poorly- and well-funded programs, with programs that had nakedly abusive staff and ones with great staff. Some parts of these systems are absolutely better than others, and none of it is good.

And it gets worse. In late 2018, 11 children died in an adenovirus outbreak at a nursing home in Wanaque, NJ because of the kind of lousy infection controls that we see over and over in these facilities.

And then came COVID-19 . And the carnage has been staggering.

It has been overwhelming in nursing facilities.

It has been overwhelming in psych facilities.

It has been overwhelming in the developmental disability system.

It has struck our elders, our disabled adults, and our children with disabilities.

Nor has it struck evenhandedly. The preexisting effects of structural racism means that people in nursing homes with primarily Black and Latinx residents are substantially more at risk than those in nursing homes with primarily white residents.

This isn’t just about disability-specific congregate settings, either. We’re seeing that prisons, jails, detention facilities, and college dorms can be impossible places to be safe in a pandemic, too.

So how do disabled people end up in congregate settings? If they need long-term services and supports (LTSS), there is something called “the institutional bias,” a set of structures that mean a lot more people end up in large facilities than would if it were truly up to them. In particular, state Medicaid programs have to pay for institutional care for recipients with a certain level of support, but don’t have to offer those same supports in the community. So some people get home and community-based services (HCBS) through a waiver. Most don’t.

And we have been fighting this one a long, long time, folks. Katie Beckett came home in 1981 at the age of 3 after President Reagan created a waiver for her; and because she had that waiver, she had a good life.

For short-termers, there is a hospital to rehab (often the same facilities LTSS residents are in) track. I have been hospitalized recently, and I was strongly pressured to enter one. After this story came out tying 44% of Illinois COVID-19 deaths to nursing facilities (I am in Illinois), I was confronted by administrators from Northwestern Memorial Hospital accusing me of being “hurtful” to suggest it wasn’t “perfectly safe” for me to enter one. A Rush Medical Center employee insisted the data isn’t in yet on whether the facilities pose risks. People don’t even have the information, much less the material resources, to protect themselves.

And I overheard patients — mostly older Black patients whose families were on the phone every single day talked into shoddy facilities with active infections. In one case the facility had recently been in the news for running out of disinfectant. I have no doubt the front-line staff were desperately trying to protect everyone. But the impact of the realities we are addressing overpowers those good intentions.

You know what happens to some of the folks who get placed in these facilities because “there’s no-one to stay with you at home”? What happened to Senator Elizabeth Warren’s brother. (Spoiler alert: he’s dead.)

How many lives could we save, how many lives could we improve, how many opportunities could we offer, how many communities could we strengthen, if we did what we know we can do — and can do not just for some of disabled people, but for every single one (nobody is “too disabled” to live successfully in the community so long as they have adequate supports)? A lot. I don’t have an exact number, but a damned lot.

We could raise kids like the ones at Wanaque, and like Roland Johnson, at home. We could give them lives so much closer to what Katie Beckett had. We could give the Lois Curtises the kind of life that let her become a successful artist. We could let elders age with people they know and trust love. We could protect people after health crises and let them die at home.

And we can do this. We can do this. We can establish a right to home and community-based services for everyone who has an entitlement to institutional care. We can build the accessible, affordable, integrated housing. We can train and pay personal care attendants and direct support professionals well, both people who do it professionally and people who do it for family members. We can abolish guardianship and agency control in favor of options like supported decision-making and microboards. We can fund the kind of community mental health services that people want and need. We can learn more about promoting self-determination, and put what we learn into practice. We can improve protections for people at risk of going in, and permanently reauthorize Money Follows the Person to help those who are already in and want to get out. For families who want to stay together, we can support that, and we can offer adequate help for those who want to strike out on their own. We can do it all, if only we solidify the national will to do it.

We can say “No more Wanaques” and not plunge ourselves into a situation thousands of times worse within a year and a half. We can say “Every child deserves to grow up in a family” and mean it this time. We can keep our elders, surrounded by support, in the communities that matter to them. We can change everything for disabled people who have signigicant support needs. We can finally learn the lessons of Willowbrook and Pennhurst — that these facilities have a life cycle and no matter what your intentions they are still congregate institutional settings with all that entails — and we can move on to something better.

We can’t undo the ravages of COVID-19 that we have already permitted to be visited on those in congregate care, but we can do better for the survivors and for those coming after them.

And we must. We must. Because these are our people.

p.s. If you want to contact your Senators and Representatives in Washington, D.C., and let them know how important this is to you, here is a good place to start. Scroll down.

On Presuming Humanity Across Opacity

opaque (adj) – (1) not transparent or translucent; impenetrable to light; not allowing light to pass through, (2) hard to understand or explain


The Mystery of the Squirrels

When I was 4, we moved to Canberra. On (some? all? I don’t remember) Sunday mornings, we called my grandmother in Dallas.

This, for those of you in the internet generation, was a really big deal. I don’t remember any other intercontinental phone calls from my childhood. You had something to say to someone on another continent — and my dad’s job requirements meant my parents often did — you got some of this really flimsy lightweight blue airmail paper and you wrote out whatever you had to say in your most squinched-up handwriting on both sides to save money and then you put it in this little Por Avion envelope and paid more in postage than you thought reasonable so it didn’t go surface mail (surface mail meant by ship, and it took long enough that when I was in Prague (we ate Australian food in Canberra), killing the weevil infestation in my food was the first step of eating many many meals and snacks involving American food, all of which got to Europe by surface. I do not like food with weevils in it to this day) and they wouldn’t die of old age before it got to them.

Anyway. My dad really liked his mom a whole lot and she spent a lot of time pretty much unable to leave her home, just sitting there and watching what went on in her back yard (the implications of this, as you will see, were lost on me until much later), so she got phone calls. My other grandmother had the cash to come out every few years, see us, drink a lot of gin, and show off her latest fur coat. So she just got letters in between episodes of freaking me out. Yeah, I have reached the age where “the olden days” didn’t all happen before I was born any more. But I digress.

At some point in there, I asked my dad why we had to call my grandmother so early, and he explained that although we called her early, she did not receive the call until much later in the day. Now, by the time I was 4 I had a very battered (so obviously much-used, but in fairness sometimes used for football (soccer) rather than geography) world globe. I understood that the world was round and that it both rotated and revolved, and that noon was when the sun was high up above, but I had not yet extrapolated well enough to have sorted out time zones. (I would figure that out a little better on a surface trip across the International Date Line when I was 6. I would also get thrown into a pool by a temporary devotee of Poseidon to celebrate the event. Learning about the world is not risk-free and sometimes requires a change of clothes.) The fact that the same moment occurs at one time in Canberra and at a totally different time or even on a different day in Dallas was utterly opaque to me.

So as I puzzled out how we could be talking to Grandmother at a different time than she was talking to us, it occurred to me that perhaps this was related to the fact that the only bloody thing the woman ever talked about was the squirrels in her back yard. At that time the children I knew mostly talked about things like their decision to never invite me to their houses, but the men I knew talked about the geopolitical situation, which had its boring moments, but which I found a lot more interesting than a group of squirrels in Texas. (I never had a clue what the women were going on about. This is not a fact about my relationships with men and women or a judgment about the conversation of housewives, which most of those particular women were. It is a fact about my complete inability to understand my mother, who was my conduit to the conversations among women, and my partial ability to understand my father, who was my conduit to the conversations among men.)

The conclusion I came to was that the telephone had the ability to predict what my grandmother was going to say a few hours later, but it really could only do that if she stuck to very very basic topics. And thus we had to discuss squirrels. Faced with this sad yet apparently immutable limitation of the predictive telephone technology, I listened to her stories of fights at the bird feeder and chases through trees as patiently as I could, produced a requisite sentence or two about my life, told her I loved her (I did not have a very clear sense of who she was, as I was 6 before my mother explained human reproduction, and I did not have an emotional tie to her yet at all, as I reliably saw her briefly every 2 years from my birth until her death, but I was a lot more pliable at 4 than I am now and, all evidence to the contrary, I don’t actually enjoy making other people feel bad), and went about my business.

Grandmother talked about squirrels during the whole time I knew her. For the record, I wish I had learned to hear the non-explicit content in her conversation, the isolation, the boredom, the loneliness, the repeated efforts to connect with her distant grandchildren the way she did with the ones near her, before she died. I have the impression that I would have liked her a lot if I had known how to connect. And she loved me; she spent real care showing me that.


Protective Opacity

One of the earliest lessons I learned was to hide everything important. The best phrasing I have for it is preserved as echolalia from some book dealing in some way with terrorism (I don’t recall the details) I read when I was 8, in DC, while my father was in Czech language training. “No man is strong who is weak for someone weak.” But I knew that long before. My mother took my baby blanket because it mattered too much to me. She slathered my thumb with something foul-tasting because it was a source of comfort, and then when I hid behind the couch to soothe myself anyway she escalated. She took my stuffed animal. She took a dog. She took what I liked to read, the clothes that felt good on my body. She took my relationships with my siblings, my cousins, my aunts. She delighted in institutionalizing me. My mother once — after my grandmother’s death — smashed the frame of my father’s favorite photo of her during an argument. She once created a sitution that forced friends of hers to flee their home with their children in fear. She used what other people loved against them, too. But as far as I can tell, I was her favorite target.

Most of what I loved, what made me feel safe, disappeared regularly anyway. That is the life of a child who moves a lot. There is nothing you can do about that except to do your best not to love what cannot be trusted. But some things I could protect to some degree by hiding how I felt … and later, as it became clear what the proliferation of unspoken but rigorously enforced apparently random social rules meant for me, I learned to get the opportunity to be around the people who were important to me by being as useful to them as possible while studiously pretending I did not care that they were there.

And then came institutionalization, where the slightest hint of connection to another person meant punishment for you and them. And then came the long years of exile, when again I forced myself not to love, that I might survive.

I was always opaque to other people, as they were to me. More so, I suspect, than many people are opaque to each other — though the old AA slogan “Don’t compare your insides to other people’s outsides” tells me it is a more universal experience than the professional literature of those with the dominant neurotype about the minds they try to deny would suggest. I learned to strengthen and fortify that opacity as a way to protect myself. I learned that opacity was a key to survival. To emotional survival every day, and to physical survival all too often.

It amazes me when I see people who just casually tell people they love them, or whose affections are visible, who display their attachments as if they are nothing. I wonder if that casualness is an act. I wonder if they understand the beauty of it. I wonder if the terror of ostracism runs deep and they simply are very brave, or if it ever is as effortless as it looks. It took me a long time to learn to see any but the most verbal and explicit of these expressions, but I watch as many as I can see, and I force myself to try to copy them. Panic every time. I can still almost never force myself to initiate touching another human being, even when I know intellectually it would be welcome, no matter how much I want to. Casual touch between friends fascinates me. Maybe I will get there. I choose as much as I can not to live according to many the rules experience has taught me are necessary for survival, and it’s much better, but that doesn’t mean it doesn’t still feel like careening toward disaster.


Personal Symbol-Sets

People keep souvenirs. Mementoes. Symbols of things that are important to them. If you are a traveler you may have a snow globe from a city you loved. If you are a serial killer it may be a victim’s bracelet. If you are a parent it may be your child’s first pair of shoes.

But the souvenirs are clues to what matters, and as symbols they come to matter in themselves. (In a psychology class once we were told of an experiment in which students were asked to bring photos of their mothers to class … and then asked to gouge the eyes out of the photos. Photos (in those days) were pieces of colored cardboard. Gouging the eyes out of a photo hurts no-one. It is purely symbolic. But the people who could do it were considered pathological.)

Between the fact that other people can rarely predict what connections I am going to make between things (though they can often follow them once they are explained) and the fact that I prefer them not to paint targets on things that matter, the souvenirs I collect are often opaque to other people. And I learned to hide them deeper, at the ends of long chains of connections.

Here is an example with short chains. I have some bowls out of which I eat. Some are blue and some are orange. I don’t like the color orange, really, but I bought orange bowls on purpose. If you gave me grey bowls to add to the stack, I would thank you for your kindness set them aside, although I love grey. (If I really like you, I might find a different purpose for them.)

I assume that makes no sense to you. Why would anyone reject bowls in a color they like, in favor of bowls in a color they don’t? They aren’t an inheritance or gift. I bought them. And that is fine. The opacity of my fondness for these specific bowls is fine. You don’t have to know or care why it matters to me. If you do care, I don’t have to tell you. If I want to, you don’t have to listen.

But I have reasons. There are two chains of associations that mean those bowls are, for me, souvenirs of things from far enough back that every contemporaneous souvenir of the thing was taken from me.

First, the blue/orange combination reminds me of a Joe Penhall play that I put the effort into reading. (Plays are hard. They are like novels, which are also hard, but with all the bits that cue me into what is happening stripped out. I don’t read a lot of plays now that the advantage of a tiny book that I will not be able finish within 50 hours of reading has been canceled out by portable e-text. In fairness I didn’t read that many before, but I read even fewer.) And the Penhall play reminds me of specific people in my past.

Second, even though the shade of blue is wrong, the blue/orange combination reminds me of the covers of current editions of some books that are reprints of books I read in editions with dark and light green covers, and those books remind me of the 18 months of my life when I could imagine a future for myself that involved a career I loved and being surrounded by people I loved, and which I wanted.

So no, more bowls might be convenient, but that convenience would not be worth the loss of the reminder of valued relationships that the sight of a stack of blue and orange bowls gives me.

People think and feel. Everybody does. They make connections and they use symbols. Their communication, their emotional states and their symbol-sets may be so opaque to you that you have no sense that they exist, but they do. And if you go from “I can’t see it” to “It doesn’t exist,” and build your relationship on a default presumption that there is nothing there, you get so much wrong.

A professional is capable of looking at my insistence on the bowls being blue and orange and diagnosing a pathological rigid insistence on sameness. (I’m an activist. If I have a pathological rigid insistence on something, it’s more likely to be the unsatisfactory nature of certain samenesses.) The prescription? Force change that upsets me, to teach me to tolerate change.

A professional is capable of looking at my (in reality hypothetical) failure to use a gift of grey bowls and diagnosing a pathological absence of “socially relevant behavior.” (This is seeing the situation only from the perspective of the gift-giver. I have a perspective, too, and social interaction is a two-way thing.) The prescription? Train me to display behavior that validates the giver.

A professional is capable of looking at my attachment to this stack of bowls and diagnosing a pathological indifference to other people demonstrated by a preference for things. (My attachment to a stack of bowls displays my attachment to other people.) The prescription? Teach me to forego expressions of what matters to me in favor of empty ritualistic behavior that others find reassuring.

There is nothing wrong with people finding various things opaque, and I’d be a hypocrite to tell you otherwise. I have melted down, recently, with people who work their asses off to include me, over the sheer opacity of “our” conversations. What’s wrong is the assumption that because you cannot perceive the humanity in a person, it isn’t there.


7 Lost Years

For almost the entire time we were both alive, I missed Grandmother’s efforts to connect with me. I did not see them. This wasn’t just because I didn’t understand time zones or because I did not yet understand how extended isolation saps the ability to connect. I’m not good at picking up on this stuff. It has taken years of effort to learn, and I still tend to need to concentrate. Part of that is the communication chasm that comes with efforts to signal, and receive signals, across radical neurotype differences, and a lot is the many times it was driven home to me that nobody would ever want to connect with someone like me anyway. (Now, think of the effect it has on autistic children that everyone around them is socialized as hard as they are to think autistics are defective in the area of social reciprocity.)

It wasn’t just the time zones. There was so much more going on than just the time zones. There was the fact that I was struggling to connect even with the people I spent hours and hours with, and I was having 60-second phone chats with my grandmother at most once a week. And even if it had been the time zones, I was 4. The ethical issues involved were far too complex to expect a 4-year-old to work out by himself.

But here’s the thing: I was asking the right question. “Why is this woman who wants to talk to me constantly telling me about squirrels?” And when confronted by the impenetrable opacity of a basic fact about the world, and my failure to grasp what I didn’t know, I came up with an explanation that covered all the known facts, and then I stopped asking for 7 years.

I regret those 7 lost years

That pattern is not limited to 4-year-olds. People enact it all the time through their whole lives. Moreover, at a certain point, in certain contexts, when enacted by people with power over others’ lives, it becomes an ethical failing, because it predictably and reliably hurts people.


A Fact About the World

Here is a fact about the world: everybody thinks, everybody feels, everybody makes connections, and everybody uses symbols. Here is another fact about the world: when someone thinks, feels, makes connections, and uses symbols and you treat them as if they don’t, you harm them.

This is the moment in the conversation where the university-ordained and self-proclaimed disability experts start lecturing me. “…not like my child…” – A Parent. “…unethical to assume…” – A Bickba. “…theory of mind deficits…” – A Researcher. “…functioning level is: breathing…” – A Professional. “…no mind at all…” – An ADAPTer. “…parents have a different perspective…” – A CIL Staffer. “…no place in disability rights…” – A National-Level Independent Living Leader.

Then if I stick to my guns sometimes there is a pause for some saccharine ablesplaining. “Cal, you need to understand, not everyone is like you.”

Then if I stick to my guns the accusations begin. “Stop assuming things about me.” “You would do the same thing.” “You just want to hurt people.” “You don’t care about anyone but yourself.”

Then if I stick to my guns they start the name-calling. “You are inappropriate … bitter … disgusting … hateful … a troll … a bully … unacceptable.”

You know what? Here is a fact about the world: everybody thinks, everybody feels, everybody makes connections, and everybody uses symbols. Here is another fact about the world: when someone thinks, feels, makes connections, and uses symbols and you treat them as if they don’t, you harm them.


Weaponising Simon’s Humanity Against Him

I once knew a man I will call Simon. I worked in his group home.

Simon had about a 6-word spoken vocabulary and no signs. No line drawing vocabulary. No object exchange vocabulary. No AAC of any kind.

One of his words was “ho-ho.” It meant Santa. Another was “bip,” probably derived from “bitch,” and it expressed an attitude of humorous insolence or angry defiance. (Simon was freaking awesome. This fact somehow seemed to elude most people.) And then there was “Kenny,” pronounced “Keeeeeeehhnnnnnnny” in a voice quavering with emotion and with lots of hand-flapping.

I like classic country. I used to like some Kenny Rogers songs. Knowing Simon burned me out on Kenny Rogers. He was enough of an enthusiast that his stereo was padlocked into a box to prevent him smashing it (again) in his excitement at the mere thought of listening to The Gambler. You could cheer him up for hours by leaning over and whispering, “You picked a fine time to leave me, Lucille.” When we would go places, which was not an entirely relaxing thing to do because Simon was an extremely energetic man, I would take photocopies of photos of Kenny Rogers to hand him, to buy a few seconds of standing still until he could not bear the joy and was forced to shred the paper into confetti. During the time I knew Simon, I listened to every Kenny Rogers song there is more times than I could bear, except Ruby, Don’t Take Your Love To Town, because Simon had nonspeaking housemates I could not communicate effectively with, and I have an ethical objection to playing that song for disabled people without their consent, and he never seemed to miss it. I just made him mix tapes of everything else and played those.

Simon was on behavior plans at all times. Because the thing that he loved most that staff could control was Kenny Rogers music, it was supposed to be tightly regulated. Do these 9 things in sequence without doing any of those 14 things (all but impossible for him), one side of one tape, often shortened to one song. It was a point of real tension.

“Too bad, Simon, you lose Kenny for this shift.”

“Bip!”

(Tell me again how group homes are not institutions?)

One day, when Simon’s family came to take him out, something that they did very infrequently (there was a learning curve to enjoying Simon’s company in public and he had grown up in a state school, so although they loved him, I don’t think they found their time with him very comfortable) and also something Simon loved beyond measure, I learned something important: ever since Simon had been institutionalized as a small child, whenever his beloved parents had come to see him and take him out, they had played Kenny Rogers songs for him in the car stereo.

Simon didn’t really speak. I don’t know how much language he understood, or to what extent he followed staff commands because he could read body language or gesture. He was not included in much conversation: most of the language addressed to him was “prompts.” I did not know how to communicate effectively with him. I do know he thought. He felt. He loved. He got angry. He made connections. He used symbols to evoke positive memories. And in failing to see that, to see him as human, to see him as their moral equal, in hijacking his most valued known symbol and using it to control him, the disability experts who designed and implemented the institutional system he was trapped in did him real harm.

In seeing people like Simon as in need of supervision rather than support, as in need of external control rather than self-determination, in trying to be their voice rather than their megaphone, many “advocates” do them harm, too. And it is especially distressing when it comes from disabled people who would fight like hell to stop anyone doing the same thing to them.

Assume humanity.

On Stupidity

I’m stupid. Stupid and lazy. I’ve been told that my whole life.

 

I’ve also been described as brilliant and hardworking.

 

The truth is, the interplay of my strengths, my disabilities, and various environments I’ve been in can lead me to appear as, and to function as, brilliant, or stupid, or something else.

 

I have spent nearly my whole life managing stupidity.

 

Not managing stupid people, you understand. I don’t believe in stupid people.

 

But people (one of whom is often me) who function as stupid because of environmental barriers, or who are treated as stupid.

 

I once sat in a grad student lounge and watched a graduate teaching assistant slowly walk an undergraduate student through a philosophical text. The student, who identified as having a learning disability, was having a great deal of trouble extracting the argument from the written words. Once it was explained to him in familiar terms, however, he was clearly taking it on board and grappling with the ideas. Both men were working hard, and they were making real progress.

 

I was a teaching assistant myself at the time, and I was idly thinking about how much I loved my students with learning disabilities to whom so little in philosophy came easily and who still stuck with it, who kept coming to office hours and raising their hands, and worked as hard as the young man across from me. I was thinking what a joy it was to teach students so eager to learn, and how lucky we were to have those students.

 

When the young man left my colleague turned to the rest of us and sighed. “He tries so hard,” he said. “Too bad he has no intellectual merit.”

 

(I had no idea how to respond in the moment. I wrote him a letter later.)

 

If I don’t have the tools I need to understand, to process, to express myself effectively, I’m not going to do those things. And you’re probably going to see my poor performance but not the reasons for it, and assume I just can’t do those things. You’re probably going to assume I am short on “intellectual merit,” in other words.

 

You’re probably going to treat me like I am just unable to do what I don’t do, which means not giving me more tools and probably conveying to me that I can’t (and that message, repeated often enough, sinks in), and I will keep not doing those things, but also I’m likely to become less and less engaged in trying because I don’t like how I’m treated.

 

Back when I was teaching, I had multiple students with learning disabilities — wonderful students who were a joy to teach — who wanted to hire tutors at their own expense rather than come to my office hours “because I don’t want you to think I’m stupid.” That’s a well-earned fear. It comes from having been treated as stupid over and over.

 

They were treated as stupid because they did not learn, or did not express their learning, to the degree expected.  There may have been some innate limitations that contributed to that — you can expect every math student to become another Srinivasa Ramanujan, but even if they have all the tools possible, most won’t — but a lot of it is that they have been expected to learn and to demonstrate learning in ways that simply do not support them.

 

But because they have been forced into functioning as “inadequate” scholars (compared to students who have been provided with at least minimally adequate tools) and then that “inadequate” functioning has been attributed to their own “lack of intellectual merit,” they are less and less likely to get improved access to better tools.

 

So now people get treated as stupid, and may even think they are stupid — and they have to manage stupidity — not their stupidity, because people aren’t stupid but the phenomenon of stupidity — by such means as working extra hours to pay for tutors so their profs and teaching assistants don’t think of them as stupid.

 

I once taught a module on calling for help to a group of women who lived in a group home for people with physical and intellectual disabilities. Some had grown up in state institutions and some in family homes. None of them had been in regular classrooms. They wanted to know how to help if one of their housemates had an emergency.

 

I was feeling pretty proud of myself. We had talked about what is and is not worth calling Nine-One-One over. We had talked about when a situation might call for police, or firefighters, or paramedics. We had talked about and practiced giving the address clearly, and about what other kinds of information might be important to convey. We had talked about staying on the line until help arrives or the Nine-One-One operator says it’s time to hang up. I thought I had given these women everything they needed. Yeah, I thought I was doing fine.

 

And then at the tail end of the last conversation I had a horrible thought. “Hey, Sarah,” I said, “What’s the number to Nine-One-One?”

 

Blank faces looked back at me.

 

If you know the number to Nine-One-One (it’s 9-1-1), it’s really obvious. If you don’t, and if you are accustomed to all kinds of thimgs having all kinds of confusing names, it’s not. It’s really not. And instead of preparing these women to be ready to take decisive action in an emergency, as they had asked me to, I had set them up to fail badly at a moment when failure would have had real consequences. I was not doing fine. I had prepared them to be stupid at a moment when they could have been brilliant and saved a life. And they weren’t going to ask, because their whole lives they had been encouraged to accept that they were just not the kind of people who know things, to accept that nobody is going to slow down and make sure they have the tools to learn.

 

So then everybody else learned the number to Nine-One-One from me, and I learned something about lesson planning from them. But it almost didn’t happen — and if there had been an emergency, and someone had shouted “Hey, Sarah, call Nine-One-One!” the story later would have been “Sarah can’t even dial a 3-digit phone number.” Nobody would have thought it was I who had failed. In a real sense in that context, I couldn’t fail: every bad outcome would have been blamed on the women. Because in that situation they were seen as stupid, and I was seen as smart.

 

That’s privilege and oppression for you.

 

I’m at high risk for this spiral, because it is known that I have cognitive disabilities and because the tools provided by default often don’t work for me. But that risk is mitigated and sometimes eliminated because I can make effective use of some tools that are routinely available and in certain circumstances I don’t trip the “stupid” stereotypes but the “intelligent” and “educated” ones.

 

So here I am, stupid and brilliant, lazy and hardworking. It’s very confusing. I don’t know who I am.

 

The truth is, I’m neither stupid nor brilliant. I have found very effective ways to do some things with the kinds of supports that are routinely provided, so I do them well and people respond by assuming I have innate talents. But some barriers stop me in my tracks, some supports are inadequate, and sometimes I stumble, I fall, I fail miserably so that people assume I have innate and insurmountable mental deficits.

 

The truth is that in some ways the world — the social and intellectual world that is constantly made and remade by its participants — around me is well-suited to me, and this is a form of privilege; in other ways it is poorly-suited, and this is a form of oppression. One of our words for this kind of privilege is “intelligence”; one of our words for this kind of oppression is “stupidity.” But intelligence/stupidity is not seen as a forms of structural injustice; the concepts are associated with innate (and largely unalterable) traits.

 

What I am not saying is that there is no variation among us. Again, not everyone can ever be a Srinivasa Ramanujan, or even one of those of his peers who made it to Cambridge in part because they were offered much more support as children than he ever was, and who would have needed far more than the few moments of good fortune that enabled Ramanujan to ride his talents that far.

 

It is not that the people we know as great minds do not have talents few of us share or that they haven’t worked hard to make use of them; it is that talent and hard work are not enough. Billions of people — all people — have real talents, which they are never able to even see recognised as talents, let alone to develop, because the supports and tools which would make those things possible are not there. And yes, I am explicitly including people with intellectual disabilities, who are regarded as the most innately limited, and who in every case have talents to develop if only they can be provided the right tools.

 

This is why we in the community of people with intellectual and developmental disabilities have something called “the presumption of competence.” The basic idea, first formulated by Anne Donnellan, is that if you cannot be sure which of several things is true, you should adopt the “least dangerous assumption.” People with power will do greater harm to a person who is capable of developing their talents with the right supports by not bothering to try to find the right supports than they will to someone for whom no right supports are possible by trying to find ways to support them better, for instance, so when you cannot tell, you should assume that better supports are possible.

 

In practice, the presumption of competence looks like the attitude that everyone is worth fully including, that people who seem untalented probanly do not have the tools needed to display and use their talents, combined with willingness and some skill to work on accommodating them better.

 

And in the real world, few people are presumed to be competent. There is a double bind in cognitive disability: sometimes you are considered “not disabled enough” to be worth accommodating because “you should be able to get by if you try,” and sometimes you are considered “too disabled” to be worth accommodating because “really, what’s the point?” Either way, though, you are forced to function as a stupid person because you are not accommodated.

 

And so your relationship to stupidity — and to laziness, which is what it is often called when you are functioning as stupid but others still insist that you could find a way to function as intelligent, if only you wanted to enough — must be carefully navigated to preserve your self-image, your reputation, and your access to opportunities to use your talents.

 

So yes, I’m stupid and lazy. By which I mean that my mind is not one of the ones society is set up to accommodate, and some people think that the result of my inability to navigate the world as it is is down to innate incapacity and others think I don’t try hard enough.

 

But I am not without some massive privilege here, so also, I’m brilliant. Many people are usually treated pretty consistently: they may be thought of as brilliant or smart or normal or stupid — and because the reflection of their minds that the world offers them is so consistent, they come to see themselves that way.

 

And so at the same time that I am trying to negotiate my own relationship to stupidity — again, not innate stupidity, but the idea and the trap of stupidity — a fair amount of what I do involves communication, which means I have to navigate others’ relationship to stupidity.

 

Nobody likes to feel stupid. Nobody likes to function as stupid. Nobody likes to be treated as stupid.

 

If you have a role which involves trying to get people to do things or support them in doing things by means of communication — if you are a teacher or a politician, a political organizer or a benefits counselor, a salesperson or a manager, an information and referral specialist or a doctor, a team leader or a journalist, a fundraiser or a tour guide, a direct support professional or an advertiser, a mentor or any of a thousand other things — you have some ability to affect how some of the people you deal with function: will they, in their dealings with you, be able to develop and use their talents, or will they be trapped in the enforced stupidity of a lack of accommodation?

 

We can communicate in ways that make other people feel stupid, or feel like we think they are stupid; we can communicate in ways that make it impossible for them to understand, process, and express themselves effectively. We can communicate in disabling ways.

 

Or we can comnunicate in enabling ways.

 

What counts as an enabling way, an inclusive way, a way that permits people to use and display their inherent strengths, varies from person to person. But one begins with the presumption of competence. There are some basic approaches that work pretty well for general communication, like plain language and easy read. There are more carefully thought-through approaches for specific audiences. There is a lot of earning people’s trust and a lot of trial and error to find out what works. And it’s worth it.

 

Look, we are all different. We all have limitations. But we also all have strengths. And we also all tend to overestimate the innate limitations in others — and often ourselves — and miss many of the barriers, and to therefore miss our on those strengths.

 

I don’t believe in stupid people. But stupidity hurts.

Conrad Goes to Denver

Year-old travelogue…

21 February, 2019, 07:50

 

My new support worker Conrad and I have set off toward Denver.

 

Already Conrad is sitting down on the job.

 

Image: Conrad, an ambiguous green stuffed animal, sitting on a couch.

 

21 February, 2019, 08:47

 

My new support worker Conrad and I are on our way to Denver.

 

Conrad, who attended a social role valorisation training on Tuesday, has confiscated my stim toy out of a concern that if I look weird, people will not include me.

 

I suspect the fact that I am staring murderously at a stuffed animal may also be off-putting.

 

Conrad says it is important to comply with social expectations.

 

Exactly one of the two of us has brought trousers to wear on the train, is all I am saying.

 

Image. Conrad, an ambiguous green NAKED stuffed animal, sits on a couch impassively, holding a blue tangle

 

21 February, 2019, 09:39

 

My new support worker, Conrad, and I are on the way to Denver.

 

I took out my phone, loaded my AAC app, and typed, “Hullo. I am on the 2pm to Denver. Where will I need to go, and when will I need to go there?” Then I showed it to a friendly Amtrak lady.

 

She looked at my ticket. Then very loudly and slowly she explained, “YOOOUUURRR TRAAAIN LEAVES AT TWOOOOOOOOOOOO.” I thanked her and we rolled away.

 

“Success, Conrad!” I said excitedly. “She talked right to me instead of talking to you about me!”

 

With tears in his eyes, Conrad high-fived me and we continued on, chattering the whole way about how all those years of struggle are finally paying off.

 

Image: Conrad, an ambiguous green stuffed animal, sits on a wooden bench at Union Station.

 

21 February, 2019, 10:23

 

I am traveling to Denver with my new support worker Conrad.

 

“You know, Cal, if you hadn’t told me, I never would have known you were autistic,” he said.

 

“What do you mean?” I asked.

 

“Well,” he said, “You just don’t seem autistic.”

 

“I have no idea what you are talking about. I’m white. I’m male. I’m incontinent. I’m rude to people. I’m wearing blue. I’m excited about going on a train. Isn’t that basically the stereotype of autism?”

 

He stared at me. “Uh,” he said.

 

“IS THIS BECAUSE I’M AN ADULT?” I asked.

 

“I was trying to compliment you,” said Conrad.

 

“Stereotypes are bullshit,” I told him. “They are inaccurate and people use them as shortcuts in ways that direct resources disproportionately and unjustly in certain directions.”

 

“You need to be appropriate,” said Conrad.

 

I decided he was right so I clicked over to the page of my AAC app where I keep my preprogrammed swears and started hitting buttons at random.

 

Now Conrad is rewriting my behaviour plan.

 

Image: Conrad, an ambiguous green stuffed animal, with a pad of paper and a pen, sitting on a bench in Union Station.

 

21 February, 2019, 11:16

 

I am going to Denver in the company of my new support worker Conrad.

 

We don’t even board for two hours and already Conrad has got drunk on cheap Amtrak wine.

 

“Do you really think this is appropriate?” I asked.

 

“Have you seen the lousy wages direct support professionals and community attendants get?” Conrad asked. “You were expecting me to get drunk on Grey Goose, you classist jerk?”

 

I have conceded the point.

 

Image: Conrad, an ambiguous green stuffed animal, lying on his back next to a plastic cup of cabernet on a table below a sign reading “To All Trains”

 

21 February, 2019, 12:49

 

I am gradually making my way to Denver with my new support worker Conrad.

 

Having got what I hoped was drunk enough to cope with the fluorescent hell (better luck next time) we have made it here to Boarding Gate F at Union Station. I had to carry Conrad on my lap. He is drunker than I am.

 

On the way we were stopped by 2 Amtrak employees.

 

“What city are you going to?” one asked.

 

I pulled out my phone with the AAC app, typed “Denver,” and showed it to them.

 

The Amtrak employee rolled his eyes. “Just tell me what city,” he said.

 

I made my best “Whatever” face.

 

He stared at me for a minute, then looked at my phone. “Oh,” he said.

 

He directed me to continue in the direction I had been going.

 

As we passed the other worker looked admiringly at Conrad. “Are you his friend? You must be very special,” she said.

 

Conrad threw up on her shoes.

 

Image: Conrad, an ambiguous green stuffed animal, sits glassy-eyed and off-balance on a plastic waiting area seat.

 

21 February, 2019, 13:44

 

I am heading to Denver with my new support worker Conrad.

 

We are just about to board the train, and we are watching the people ahead of us.

 

“Does it ever make you sad?” Conrad asks as a redcap goes by helping a couple with their luggage.

 

“Does what ever make me sad?”

 

“That you have a disability?”

 

“Does it make you sad that you have an amphibiosity?”

 

“I do not have an amphibiosity. I am an amphibian.”

 

“Weird,” I say.

 

A woman dropped something on the floor and the person next to her leans down and picks it up.

 

“Why would I be sad that I am disabled?” I ask.

 

Down on the track a man lifts another passenger’s suitcase into the car.

 

“You know. Because you don’t do stuff by yourself. You need someone else’s help.”

 

The gate agent explains to a young couple that they are at gate F but they should be at Gate D. They thank the agent and leave.

 

“I need someone else’s help,” I repeat.

 

“Yes. Does it make you feel sadto know you don’t do things all by yourself?”

 

I watch another redcap moving more luggage for a family.

 

“No, Conrad,” I say. “It doesn’t.”

 

Image: back view of ambiguous green stuffed animal sitting on wheelchair joystick by electronic sign with train information.

 

21 February, 2019, 16:15

 

I am riding the train toward Denver with my new support worker Conrad.

 

We are looking out the window at the flat Midwestern landscape.

 

“It’s pretty,” I say.

 

“It is,” says Conrad, “but there are no lily pads.”

 

There are no lily pads.

 

“I have a job in your life,” Conrad says. “A lot like your wheelchair does. I’m a tool for independence. But unlike your wheelchair I am more than just a tool.”

 

We sit for awhile and watch the fields go by and think about lily pads.

 

Image: Conrad, an ambiguous green stuffed animal, looks out a train window at a snowy field.

 

21 February, 2019, 16:50

 

I am in Galesburg on my way to Denver with my new support worker Conrad.

 

“You should take off those earphones when I’m talking to you,” he says.

 

“I disagree,” I say.

 

“How do you think it makes me feel?” he asks.

 

“I think it makes you feel happy,” I say.

 

“It doesn’t make me feel happy.” In truth, Conrad does not look as happy as I had expected.

 

“Happier than if I didn’t use them,” I say. “They are assistive technology. Assistive technology makes everyone’s life better.”

 

“How exactly is it making my life better for you to use headphones?” asks Conrad.

 

“Because I need to listen to music to stay calmer,” I say.

 

“You could take the headphones out and we could all listen.”

 

“I am listening to a bagpipes song on 6-hour loop,” I say.

 

Conrad looks at me.

 

“How does it make you feel that I am wearing headphones?” I ask him.

 

He sighs. “Happy.”

 

I smile. “I knew it! Assistive technology makes everyone’s life better.”

 

Image: ambiguous green stuffed animal in front of a train window with a man smoking behind him

 

21 February, 2019, 20:57

 

Night has fallen on my journey to Denver with my new support worker Conrad. We have been on the road for 13 hours.

 

He’s drunk again.

 

“When do we go back?” he asks.

 

“We get back Tuesday afternoon.”

 

“Wait — WHAT?”

 

“I told you this when I hired you.”

 

“I thought you were kidding!” He waves in my general direction. “Cripples don’t go to Denver!”

 

“Some do.”

 

He lowers his voice to a hiss. “Don’t you know about the overtime policy?”

 

“I do.”

 

“I’m only allowed to work so many hours a week!”

 

“Well, actually…”

 

“I’ll be a fugitive by Saturday!”

 

“I’m paying out of pocket, Conrad. You’ll be fine.”

 

“Wait, are you doing something illegal too?”

 

“No. I’m just not on a waiver program. Only so many people get services at home and I’m not one of them.”

 

“You’re pretty fucked up,” he says, eyeing me.

 

“That doesn t qualify you. There’s a waitlist. Anyway…”

 

“You’ll be sorry when Elliott Ness comes bursting through our door!”

 

“Elliott Ness is not coming through our door.”

 

“You can’t be sure of that!”

 

“I can. First, I am not on a waiver so it doesn’t even apply to you. Second, they wouldn’t burst through your door. They’d just stop you working. Third, Elliott Ness-”

 

“Well, that’s wrong.”

 

“It is.”

 

“What if you need me?”

 

“I do need you. That’s why I am putting up with this silliness.”

 

Conrad takes another mouthful of wine. “No, if the time is up and you still need me to work.”

 

“Again, this doesn’t actually apply to us because we aren’t in the waiver program. But either you work and say you didn’t. Or you risk your job and paycheck. Or you leave me to fend for myself.”

 

“That’s a helluva choice.”

 

I look out into the night. There’s not much to say to that.

 

“And Elliott Ness…”

 

“Conrad,” I say. “I know you are new to Chicago…”

 

“I was being warehoused,” he says distantly. “And then one day a freedom fighter hid me in a cardboard box and snuck me out.”

 

“If they scan your barcode when they put you in the box, it isn’t really sneaking, Conrad.”

 

“You don’t know! And after a lot of darkness and jostling, the box opened and there you were.”

 

“I was.”

 

“And we had the job interview.”

 

“We did. But again… Conrad, have you been watching The Untouchables episodes to learn about Chicago?”

 

“Yes,” he says proudly. “I’m on Season 2!”

 

The Untouchables isn’t an accurate contemporary account….”

 

He glares at me over the bottle.

 

“Okay,” I say. “Okay. I give up. But can you do me one favor?”

 

“What?”

 

“After you are done watching The Untouchables, can you watch Crime Story? I’d like to take a trip to Las Vegas.”

 

Image: sleepy looking ambiguous green stuffed animal lolling on my plaid jacket cradling a wine bottle by a dark window

 

22 February, 2019, 09:57

 

I have reached Denver with my new support worker Conrad.

 

“Now what?” he says.

 

“Now we go to the hotel,” I tell him.

 

“How do we do that?”

 

I pause to look up the address.

 

“Is someone meeting you?” a woman interrupts.

 

I shake my head.

 

“Look,” says Conrad. “There’s a bus.”

 

“Let’s walk,” I say.

 

“It’s cold.” It is cold.

 

“I’m afraid of buses,” I tell Conrad.

 

“I’ll write a program to increase your bus-using behavior,” he offers.

 

“No, you fucking won’t. You’re a support worker, not a control worker.”

 

“That’s my job.”

 

“Your job is to support me so I can live my life my way.”

 

“Right.”

 

“You deciding I need to increase my bus-using behavior is not supporting me. It is controlling me.”

 

“Bus-using behavior is very useful,” Conrad says.

 

“BOLLOCKS YOUR BULLSHITTY BUS-RIDING BEHAVIOR!” I type in all caps.

 

“Indoor voice,” says Conrad. “People are staring.”

 

“I’m a middle-aged nonspeaking wheelchair user in conversation with a small green stuffed support worker of indeterminate species who came to Denver in February without any trousers. People are gonna stare.”

 

Conrad rolls his eyes.

 

“I don’t want to go on the bus,” I say. “But it’s cold. But I don’t want to go on the bus. But it’s cold. But I don’t want to go on the bus. But it’s cold.” I take a deep breath. “We will try to go on the bus. But I can get off if I have to. And you will do your best to be a supportive presence.”

 

“Okay,” says Conrad.

 

So we ride the bus.

 

And it works out.

 

Image: Conrad, an ambiguous green stuffed animal, sits on a bus luggage space gamely attempting to look supportive

 

23 February, 2019, 02:51

 

I am in a hotel in Denver where my new support worker, Conrad, has met some of my friends.

 

“They seem to like you,” he says now. “Do you think they know you have a disability?”

 

“Pretty sure they do,” I say, reclining my wheelchair.

 

“I mean that you have autism.”

 

“Pretty sure.”

 

“You must be very grateful that they put up with you in spite of your autism,” he says.

 

“I am grateful that they are my friends. They are my friends because of who I am and who they are, not in spite of who I am.”

 

“I didn’t know how hard it is to spend time with people with autism before I met you. I knew a little bit about autism because my friends Simon and Tony explained it. But you can’t really know about autism until you have been in a carer’s shoes.”

 

“You don’t have shoes, Conrad. You don’t even have trousers.”

 

He ignores me. “Do you think they feel sorry for you?”

 

“No,” I say. “They haven’t really met you yet.”

 

“You don’t have a sense of humor,” he says.

 

“I might have a little bit of a sense of humor.”

 

“You don’t have imaginative play skills.”

 

“If I didn’t have imaginative play skills, we would not be having this conversation.”

 

“You are often rude. I know you don’t mean to be, but sometimes you say the wrong thing.”

 

“Sometimes I say the wrong thing,” I say. “Then I feel bad. In fairness, sometimes I am rude on purpose.”

 

“You did challenging behavior before,” Conrad says.

 

I don’t want to talk about challenging behavior. Not the kind he means anyway.

 

“You did challenging behavior for no reason,” he says. “We should work on your challenging behavior so you can have friends.”

 

“I was in pain and sick and I couldn’t get my doctor to call in the meds I needed and I kind of melted down but I went in the bathroom and was private, Conrad. I had a reason. It’s fine.”

 

“If they knew you do challenging behavior they wouldn’t be your friends.”

 

“Conrad, this isn’t kind and it isn’t true.”

 

“And you don’t think about other people’s feelings.”

 

“It must be very hard to be around someone like that,” I acknowledge.

 

“It must be so hard for them.”

 

“Conrad,” I say, “you are a small green plush package of challenging behaviors. You are doing one right now.”

 

“No, I’m not,” he says. “I don’t have an intellectual and developmental disability.”

 

“People like me. Okay, a lot of people don’t like me. And that hurts very much. But there are people who like me. And I like them. You just met some.”

 

“Maybe they don’t know you do challenging behavior.”

 

“They know.”

 

“You know,” he says thoughtfully. “I could write a program to teach you friend behaviors. I think in 5 or 6 years you could even be friends with me.”

 

“Conrad,” I say, “do you remember when we were sitting there and then we looked up and my friend was there and they were smiling and they hugged me and they sat down and we were talking and we had jokes you didn’t understand and memories you didn’t know about and then they had to go and we said we would see each other tomorrow?”

 

“Don’t change the subject,” says Conrad. “What do you think, should I write you a program to teach you to be my friend?”

 

“No, thank you,” I say. “I think I am good with maintaining a professional relationship with you.”

 

Conrad shakes his head sadly. “It makes me so sad that you have autism,” he says, “so you don’t understand the value of friendship.”

 

Image: Conrad, an ambiguous green stuffed animal, sits dejectedly in a hotel room pondering my unsuitability for friends

 

 

Little Red Wagons

 

I saw a meme about autistics often having a pathological fear of making mistakes.

 

I don’t know any autistics with a pathological fear of making mistakes.

 

I don’t know any autistics with a pathological fear of making mistakes.

 

For those in the back, I don’t know any autistics with a pathological fear of making mistakes. 

 

Every autistic I know lives in the midst of people who are at least somewhat successful in neurotypical society (not all of whom are neurotypical; we do this to each other) who have a set of arcane, frequently nonsensical or contradictory, and utterly unspoken rules in their head. These rules are invisible to autistics and I swear some of them just get made up on the spot to justify “I feel bad and I am blaming it on you.”

 

Autistics inevitably and without any awareness break these rules.

 

Then comes the punishment. Some of these punishments are mild and some are devastating. Which, because the rules are a freaking secret, is in effect random punishment. You can’t predict it, you certainly can’t avoid it, and you can’t usually even learn from it because it doesn’t make sense.

 

I know an awful lot of autistics who have a perfectly reasonable fear of random punishment. We have learned to frame it as us making mistakes, but it is the dread we have learned will come if we “make mistakes,” the closed rooms and the fists, the shattered friendships, the grief in our existence we learn to recognise in our parents. It’s not the “mistakes,” it’s the punishment.

 

I pointed this out and someone said, yeah, that should be rephrased.

 

It should not be rephrased.

 

The people with relative power here should not get to build and maintain a social environment which is inaccessible to other people and punish those to whom it is inaccessible and pathologise perfectly human responses to that oppression. And these are not just two alternate ways of looking at things. If you punish a living creature randomly, this is what you get. Learned helplessness — the awareness that you cannot protect yourself — and emotional harm — because nobody can comfortably live that way. The creature, whether human or not, fears what harms it and which it cannot defend itself against.

 

And here’s the thing: you aren’t innocent. Nor am I. Because we all do it to each other. All of us. Without necessarily intending to or knowing about it (although sometimes you realise it later, or at least I do). I hurt, I blame you and retaliate a little or a lot; or I hurt, I am distracted from gentleness and am rough with you. It’s human. It has to be actively resisted. And even then we will fall short. Every one of us is implicated.

 

I had a friend tell me earlier this year that they are afraid they will hurt me. Well, yeah, if we stay friends it is gonna happen. It always happens. And I am gonna hurt them too. I really don’t want to but I will. The test of friendship is in the aftermath, the trust, amends, and forgiveness. But I have faith in this friend because I have watched the conscious gentleness with which they treat others. I want to be more like this person. I want to be friends with them. I want the world their existence suggests is possible to come to pass.

 

If you have a little red wagon and you take it everywhere, and sometimes it gets away from you and bangs into things, because that happens, and sometimes when you are loading rocks in they are heavy and you drop them rather than placing them gently, and sometimes you leave it outside in the rain, and once you dropped it off the garage roof to see what would happen (and then, okay, then you did it a few more times because the clang was tremendous), and after 7 or 8 years you look at it, there are going to be dents and scrapes and rusty bits. Those aren’t pathological. It’s just what happens when you are a wagon in daily use in a rough life, and what happens even more when some little twerp starts dropping you off garage roofs.

 

So much of what gets pathologised in neurodivergent people is just the dents and scrapes and rusty bits that come from being neurodivergent in a world built for NT’s, or even just from being human in a world that is at least as rough on humans as it is on well-used wagons.

 

If you blame the wagon for the dents, if you have professionals giving lectures on the distressing tendency of wagons to develop dents, if you start staging interventions on every shiny Radio Flyer you can identify to stop them developing dents while you are still dropping them off the roof and running programs to get dented wagons to polish themselves up, you know what happens? You completely miss what you are seeing. (But you build a certain number of exciting careers.)

 

Wagons are not sentient. You do not harm a wagon by pathologising it in your grant proposal and going on a lecture tour telling wagon owners about all the things they need to do to stop the wagon from developing the behavior of dents, even if you insist one of the things they should do is spend 40 hours a week dropping it down a ravine to get it ready to be dropped off a roof.

 

Even so, if you want your wagon to be as pristine as possible, be gentle with it.

 

Autistics, much as everyone misses the fact, are human. Hurting people to stop them behaving like they have been hurt has a moral component to it that banging up your wagon to keep the paint job fresh does not have. And if you want a person to be undamaged, step one is to try not to damage them. Nobody stays factory-new and shiny very long, and no matter how careful you are there will be some things you cannot avoid, but you can make choices within the range of what is possible in human relationships.

 

So let’s skip the feel-good memes about our so-called pathological fear of mistakes, which is actually a healthy response to a pathological situation, shall we?

On the Limits Tacitly Imposed By Communication Systems

Okay, talkies, I have a dare for you. I’m not kidding. If you are a full-time fluent speaker, I’m actually asking you to do this, even though it is work. Feel free to spread it out over multiple days. (And note: you will learn a lot more if you read each step, do it, and only then read the next step.

 

STEP 1:

 

Take 128 index cards and a pen. Set aside a pad of paper for later. (None of these things is intrinsic to the task. Feel free to substitute alternate ways of writing if needed for disability reasons. But if you can use index cards, that will help you grasp my point.)

 

STEP 2:

 

Write out as many of the really important words/phrases/sentences you may want to say as you can, one on each card, without going over 128. You’ll be able to combine things. So if you have a card for “I’m hungry” and a card for “not,” you don’t need another card for “I’m not hungry.” You can already make that message. You don’t have to use all 128 cards, but you can’t use more.

 

STEP 3:

 

Pick a number between 1 and 5. Write it down. You’ll need it later.

 

STEP 4:

 

Contemplate how many options 128 is. I mean, that’s a stack of cards you have in your hand, right? It could be hard even to find the right card when you go looking.

STEP 5:

 

It’s too late to go back and change anything now, but ask yourself if you forgot anything.

 

STEP 6:

 

Using only the messages you have written on your cards, and based on the number you selected in step 3, write out one of the following:

 

  1. a love letter to someone you want to spend your life with
  2. a crime report explaining how someone hurt you and giving enough evidence that the crime can be solved and prosecuted
  3. a eulogy for a parent or other central figure in your life
  4. an essay about the best and worst things that happened to you today and why they matter
  5. an account of your dreams for your future

 

Do your best. Do your very, very best.

 

STEP 7:

 

Put what you have just written aside. Go for a walk. Shake out your body. Have some water. Notice how you felt writing that. Notice how you feel afterward. Take a break for a day or two. This is hard stuff.

 

STEP 8:

 

Give what you wrote to a friend. Tell them a person with a disability wrote it, but don’t tell them more than that. Ask your friend to read it and give you an honest assessment of this person. Listen carefully.

 

STEP 9:

 

Make your own adventure.

Rudolph

Every year around this time I get upset about Rudolph. Here is this year’s rant.

~

You know Dasher and Dancer and Prancer and Vixen
Comet and Cupid and Donner and Blitzen
But do you recall
The most famous reindeer of all?

~

This is marketing, by the way. Rudolph was born in 1939. His identified “father” was a fellow called Robert L. May who wrote a booklet about him for Montgomery Ward. I do not know whether any other “parents” were involved in his (asexual) creation.

~

The song was an adaptation daring to 1949, written by Rudolph’s “uncle,” Robert L. May’s brother-in-law Johnny Marks, and performed by Gene Autry. So the claim that Rudolph was the most famous reindeer and, in particular, elevated above Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner and Blitzen, was solidly in place by 1949.

~

But Dasher and his compatriots were already very famous by Rudolph’s birth, having showed up in 1823. (Their “parenthood” is slightly murky but most people accept Clement C. Moore’s 1837 claim to “paternity” — the poem that introduced them had originally been published anonymously.

~

Anyway, this is all kind of a digression, but while Rudolph is the most famous reindeer now, that’s in part because excellent public relations work was done on his behalf.

~

But also think about it: for those kids who don’t have solid role models for how to live well, and that includes many kids who grow up with a marginalization their parents, teachers, etc., don’t share, the cultural artifacts, like books for me or TV shows for kids today or songs like “Rudolph”, that offer us models of how to navigate in the world can be very powerful. I learned a lot about how to navigate in the world from Rudolph, and all of it was very destructive.

~

That’s marketing too, even if it is not intentional. This song sells a particular understanding of how the world works, and part of that is this claim that “Everybody knows about this.” Art is a personal expression of the artist in response to the world, so it tells you something about the world — the chaos and suffering in Picasso’s painting “Guernica” and the arcane and repressive structure in Kafka’s novel “The Trial” are two powerful examples, but this is true of “Rudolph as well — and if the story is that famous and goes unchallenged and you, the child listener, are suspected of being one of the few people not “in the know,” then you should probably accept the truth of it. I’m not suggesting, of course, that this is intentional messaging. I’m just reporting on the effect it had on me as I tried to sort out the confusing allistic world I had been dumped into without any guide.

~

Rudolph the Red-Nosed Reindeer
Had a very shiny nose
And if you ever saw it
You would even say it glows

~

Now, today, this is seen as a pretty neutral trait. But while I was reading Wikepedia to get my facts right for the last section, I came upon a really good point. In the thirties, a bulbous red nose was part of the stereotype for alcoholism. And people with alcoholism were deeply devalued. They were largely considered irredeemably bad people.

~

In 1935, stockbroker Bill W. and surgeon Dr. Bob S., two members of the Oxford group, a fellowship emphasizing spiritual values in daily life, met. Bill had managed to achieve a tenuous sobriety and was trying to help other alcoholics. Bob was still drinking. Bill persuaded Bob that alcoholism should be viewed as a disease, and Bob subsequently managed to stop drinking as well. The two men founded Alcoholics Anonymous.

~

Today, there are a lot of valid criticisms of A.A. We challenge the religious and cultural underpinnings. We look at how many people do not find the model successful. We address the way the emphasis on abstinence undercuts the very positive effects of medication-assisted treatment and harm reduction, and the effect on people with significant pain who benefit from certain kinds of uses of medications which can also be abused.

~

But at the time of its creation and for a long time thereafter, A.A. was an enormous step forward. Many people have benefited tremendously from working the program — including people who had no other place to turn.

~

The point is that although Wikipedia doesn’t suggest this was in any way intentional, Rudolph’s initial devaluation may have made a lot more intuitive “sense” back then.

~

It is also worth acknowledging that in the 1930’s “feeblemindedness” was thought to be connected to all kinds of deviance (disapproved-of behavior), including alcoholism, so my childhood identification with Rudolph may have been more on point than I could have guessed.

~

But whether we see the red nose as a possible indicator of “poor character” (for the record, I do not agree with the assessment that alcohol abuse is a moral failing; I’m talking about societal attitudes at a particular point in history) or intellectual/developmental disability or just some utterly irrelevant feature of his, it clearly marks Rudolph out as “different” and makes this song an instruction manual for those struggling with few adult resources for coping with differences.

~

All of the other reindeer
Used to laugh and call him names
They never let poor Rudolph
Join in any reindeer games

~

Rudolph is teased, bullied, and ostracized, a pretty common pattern for children and adults who are marked as different.

~

Then one foggy Christmas Eve
Santa came to say
“Rudolph, with your nose so bright
Won’t you guide my sleigh tonight?”

~

And this, of course, was the point of Rudolph’s atypicality. More trivia from Wikipedia: apparently Robert L. May was in Chicago attempting to look through the fog at Lake Michigan when the idea of a reindeer who could help Santa navigate through the fog occurred to him.

~

How many of us have been encouraged to work twice as hard, to be twice as good at things, as the other kids, in order to be accepted? This is the myth. If you are useful enough to people in power (and Santa has a lot of power, even in the sanitized American version where St. Nicholas may not be accompanied in his travels by the Devil but does manage to run the most extensive surveillance network in existence), you will matter.

~

It’s a deeply capitalist myth. It aligns itself with the idea that the dignity of work consists not in the value of identifying something meaningful to do and being enabled to do it, but to participating in the creation of wealth, which you won’t necessarily get a share of. It aligns with the idea that 14(c) subminimum wage should not be repealed (it was enacted in 1938, by the way, a year before Rudolph’s “birth”) because there is value to the individual in being placed by service providers into a segregated “workshop” where they do whatever work they are assigned for sometimes pennies an hour.

~

Disabled children are urged in so many ways to fit into social, educational, economic and sometimes even familial structures that were never designed for them. The idea that your utility to others is a measure of your value has a role in a community where everyone works together towards common goals. When the others in question are powerful people whose goals do not include your well-being, the idea is extremely destructive.

~

Rudolph is now useful to Santa, who previously had seen no need to interrupt what the others were doing to him. And we are led to believe that this change, the change in Santa’s conception of him from irrelevant red-nosed fawn to potential tool, is supposed to signal a change in his fortunes.

~

Then how the reindeer loved him
As they shouted out with glee
“Rudolph the Red-Nosed Reindeer
You’ll go down in history”

~

And here is his reward. With Santa’s approval on one night of the year, Rudolph wins over his bullies and they welcome him.

~

This is not how the world works.

~

Authority figures most certainly can have an impact in bullying. This is not how.

~

First, if Santa cared nothing for Rudolph at any time before 24th December, he won’t care about Rudolph from 26th December until he begins to plan for his next run. Rudolph is a means to Santa, a tool to help Santa achieve his own ends — and only as a means — and not an end in himself. To put it another way, Santa is not treating Rudolph as a person, but as an object. He is observing the forms of interacting with him as a person, but that is only because just as you turn a knob to operate a stove or push some buttons to operate a microwave, you say things like “You are so talented. Won’t you join my team?” to operate a sentient non-persons whom you desire to use as a tool.

~

Second, once an outcast achieves approval from someone whose approval matters to their bullies, the resulting envy may become a new “reason” for bullying, just as soon as the authority figure looks away. If Rudolph were useful every day Santa’s approval might protect him from the other reindeer every day. But his approval one day a year (and only if that one day is foggy) will not drive a significant change in Rudolph’s standing with the other reindeer. This is why “teacher’s pet” is not a compliment.

~

Rudolph, people experienced with bullies know, is about to get clobbered.  But the little child hearing this song, letting it sink into them and affect their worldview, looking for constructive ways to handle being laughed at and called names and left out of the group, may not. I did not. I believed this story about how the world works, in the many explicit and implicit ways it was taught to me as a child. And it sank so deeply into me that when I am not paying attention, I still act according to its guidance. I try to buy belonging with usefulness.

~

But belonging is not earned. It’s either the default state or it isn’t. All that usefulness gets me is willingness to endure my presence, if that. And offering a child — or anyone — the chance to belong but delivering only the opportunity to be present is a cruel bait-and-switch.

~

Moreover, unless belonging is conceived of as automatic, unless we cannot lose the relationship with our communities (even though it may change), then we are forever trying to justify something that we desperately need to be able to take for granted. And Rudolph is a symbol not of a community where everyone is embraced, but of the tenuous nature of that embrace, how hard it can be to win (which shows how easily it can be lost). That is not how we need to be educating children.

~

We all deserve to belong.

 

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?