Please don’t read this.
If you’re here, you probably know me. You already know the gist of what I am going to say. So reading it is not the best use of your time. Instead, use your time to click on the links I have included. Listen to real experts you may not have heard from on the issues I am about to discuss. Some of these videos are uncaptioned and all are undescribed, and I apologize for that: I’ve done my best to make this accessible and I have fallen short. But although I am often ignored in face-to-face contexts, when I write on the internet, people read what I have to say. The voices in the links need to be heard by the people who read what I write – and I don’t think that’s happening.
On 5 April, VOR (and if you need to ask what that stands for, Google it; I’m not typing it out because the name contains a slur for the people the organization claims to be the “voice of”) sent a letter to the Secretary of Health and Human Services and the Administrator of the Centers for Medicare and Medicaid Services. I’ve just seen it; you can see it here.
The letter claims that VOR is advocating for the rights of all people with intellectual and developmental disabilities, that there are “degrees of disability” and that a significant number of people with severe enough disabilities want and require institutional care – so that care should be provided. In fact, they claim that the best possible chance certain people have for community integration is institutionalization in intermediate care facilities.
None of this is new; promoting the institutionalization of people with intellectual and developmental disabilities is VOR’s whole purpose. They do it in the name of “degrees of disability” and of “safety.” Even if institutionalization, done well, were, in fact, a safer option than community integration, done well – it’s not – what they are essentially saying is that certain people with disabilities should be treated like children. We limit children’s freedom to protect and guide them. As children grow toward adulthood, we must gradually empower them; as adults we should be free.
VOR wants to treat adults with disabilities like children; but adults are not children. “We thought these were childlike people,” advocate Gunnar Dybwad said. “This concept of the mental age, that ‘he had a mental age of six’ and therefore would behave like a child of six, which was nonsense, because no child of six weighs 122 lbs. and has lived twenty-two years. And living twenty-two years makes you a different individual than living six years.”
Moreover, as a federal court has already acknowledged, unnecessary institutionalization is a form of discrimination. Even institutionalization widely agreed to be both coercive and unnecessary continues today; as a result Congressman Sensenbrenner and Senator Schumer have introduced the Disability Integration Act (D.I.A.), a bill designed to give people with disabilities a chance to live outside of institutional settings, in their own communities. It is time to reject the VOR approach to people with disabilities, pass the D.I.A., and take another step forward in the long march toward full equality and meaningful justice for people with disabilities in America.
Rights and Representation
As writer Mel Baggs said when I brought up the letter, “You would think that if you wanted to make any claim toward being a group of people’s voice, then you would maybe – just maybe – not use a word to describe that group of people that 99% of that group of people experience like a knife wound to the gut.”
“I have been called ‘r*****ed,’” says an unnamed member of the self-advocacy movement from New Jersey, “and I never liked that word at all.”
The word “makes me feel like being put away, not wanted. Like I’m not a person,” adds another self-advocate.
“It’s not nice to call other people names” adds a third.
I believe firmly that “the disability community” necessarily includes both disabled and nondisabled people who are speaking on behalf of people close to them, people who by virtue of age, denial of services, or the inadequacy of the current technology cannot effectively speak for themselves. When those speakers-for are speaking from a disability rights perspective, that’s “the disability rights voice” too because that is the best voice some people with disabilities have. But that doesn’t mean that just anyone in the vicinity of a disabled person can “speak for” them. To be concerned with disability rights is to be concerned with – well – disability rights; and from my reading in the various strands of the movement, this appears to be what we pretty much all agree disability rights are:
(1) Survival. This means survival as individuals – we need the basic supports to stay alive – and as impairment groups – so, for example, the current move toward the eradication of people with Down Syndrome is off the table – and as communities, so suppressing the language and culture of the Deaf community (which does not, as a whole, consider itself to be part of the disability community, but which I include because the critiques of “ability” and the basic approach to rights are so similar to the other strands) is also a violation of disability rights. Obviously a right to survival is not absolute; we are not immortal. But we insist that we have the same right to survival as anyone else.
(2) Self-definition. We define who we are: our values, our dreams, our ideas our role models, the way we describe ourselves and our identities. Take a look at the neurodiversity movement, which is doing some fascinating work these days on difference as opposed to deficit; or at the Deaf community’s response to the Congress of Milan back in the 19th century (I am no historian so I make no claims, but the Congress of Milan is as far back as I have been able to trace the specific constellation of disability rights ideas we work with today) and their insistence that, for Deaf people, signing is better than speaking; or at the development of “crip culture” in spaces informed by the independent living movement. One major attack on self-definition today is the applied behaviour analysis (A.B.A.) “therapy” for autistic people, which focuses on getting them to act as if they had neurotypical brains rather than minds of their own. “I am a person first. My disability is second,” people with intellectual disabilities have been saying for decades now.
(3) Self-determination. Every single strand of the movement insists, “We speak for ourselves.” Moreover, all of the major populations that get institutionalized, including those represented by the sub-traditions in the self-advocacy, independent living and neurodiversity movements as well as the complex groups of people interacting with the psychiatric system and intersectional groups like Deaf and people with disabilities of colour, undocumented people with disabilities and disabled LGBTQIA people insist that freedom is a core disability right. And of course it is: human beings are born with a drive to be uniquely ourselves, to make personally meaningful lives. Disabled human beings are no different from anyone else in this respect. That requires freedom. Beyond this, we have as much right to shape our own lives as anyone else. Again, this is not an absolute right to control the environment: we are not dictators. But we ought not to be any more limited than anyone else – and that includes people with limited communication systems, who can nonetheless convey what they enjoy and what they do not to support people who are paying close attention. “I want to be in charge of my own life,” the great disability rights leader Roland Johnson said. “I want to be in charge…. I want to be in charge over my own life. Not you telling me what to do. I want to be in charge of my own life.”
(4) Access. Barrier removal is a huge issue. The blind community, for instance, has fought together for coming up on 80 years to address the limitations that the sighted place on the blind; the Deaf community has fought for access to communications; the independent living movement has fought to access to physical spaces; the self-advocacy movement has fought for physical and cognitive access; people who identify as having mental illnesses and those involved in the psychiatric system have fought to address barriers based on preconceptions about them as well as barriers based on the expectation that everyone will be cognitively typical; the neurodiversity and psych survivor movements have fought for the freedom to go places and do things without anyone intervening; the parents’ wing of the movement has fought for access for their kids.
(5) Supports. Many of us require supports that nondisabled people don’t. It’s not that they don’t have support needs – as social animals, humans are brimming with support needs – it’s that their support needs are quietly and invisibly met by society (although some in society get their support needs much better than others) while ours are not. Some of us need assistive technology; some need financial supports because of the additional costs imposed on disabled people that enabled people do not bear; some need medical or psychological care; some need support workers and personal attendants. People with disabilities – all people – should have access to the tools we need to make meaningful, good lives for themselves just as the most enabled people do.
(6) Inclusion. And finally, we want a voice, a place at the table, meaningful integration, a chance to influence our society in the direction that we want it to go – just like everyone else.
These rights play out in very different ways for different impairment groups because we face very different barriers. For example, the independent living movement fought hard not to be forced into segregated education; the Deaf movement fought very hard not to be forced out of programs designed to meet the particular needs of manual communicators and into a mainstream not prepared to welcome them. But the underlying principles seem consistent to me from everything I have read, and to me the critique of equal ability being required for equal status in society plus the demand for those six rights is what characterizes the disability rights movement.
VOR is opposed to self-definition; their very name flies in the face of what people with intellectual disabilities have been saying in almost complete consensus for decades. As Valerie Schaaf said more than 40 years ago, “it’s terribly cruel that we are spoken this way, labelled this way. To me, if you gotta label something, label words, label jars, label streets. But don’t label persons. You put ‘em down in the hole.”
VOR is opposed to self-determination, with its insistence that some people, simply by virtue of who they are, belong in institutions. It is opposed to meaningful inclusion because meaningful inclusion cannot happen from an institutional setting. It is not a disability rights organization and it has no place pretending to represent the rights of people with disabilities.
Degrees of Disability
On one hand, the claim that different people with disabilities are different and have different needs is fairly straightforward. On the other, VOR completely ignores the role that institutionalization plays in limiting the capacities of disabled people.
35 years ago, the television show St. Elsewhere ran a truly horrible – even by the standards of the day – episode dealing with Down Syndrome. In it (see 15:49-19:05), a couple pregnant with a long-awaited son is told that the fetus has Down Syndrome. A conversation follows in which, in brutal ignorant terms, the life of a child with Down Syndrome is described.
“How r*****ed will the baby be?”
“It’s hard to say exactly. Some Down’s children live well into their twenties. But they are children forever. The average mental age is about seven years old, though some do considerably better.”
“Will the baby be deformed?”
“There’s a high risk of some sort of deformity: arched palate, slanted eyes.”
“Some people call Down Syndrome a serious handicap, but it’s not,” says a woman on a BBC3 clip about “Things People with Down Syndrome Are Tired of Hearing.”
“We can all live amazingly active lives, can’t we?” says another.
“She can be anything she wants to be,” says the mother of a small child with Down Syndrome. “Unless she wants to play for Liverpool, in which case…” – she shakes her head. “Everton.”
What happened? Down Syndrome is a chromosomal condition; the human potential of people with Down Syndrome hasn’t changed in the last 50 years. What’s different is that the person being described in the St. Elsewhere episode, although the screenwriter never makes this clear, grew up in an institution. That description is based on an institutionalized population, people with 100% hepatitis infection rates, people denied educations, people who were, for all intents and purposes, denied futures even though they were allowed to physically survive for as long as they could hang on. People who grow up free, in families, with adequate education and supports, are completely different.
And even people who have already been institutionalized long-term can benefit from moving out. At a national conference, self-advocate Roberta Gallant reported, “I am a former resident of the Laconia State School and Training Center in Laconia, New Hampshire. Now I live in Concord, New Hampshire. I have my own apartment. I made some friends where I live. For 25 years I lived at the Laconia State School and we should have not ever gone through this situation, no. Do any of you agree with me?” she asked, to calls of “Yes!”
The “Need” for Institutional Care
I have never met anyone who wanted institutionalization. And I have known a great many people with disabilities. We don’t want it.
“I was there for ten years,” says Richard, a survivor of Woodlands School in British Columbia, “and it was – no, it’s not worth living in there at all, because the institution itself was so much abuse going on and it was just horrific and we should not have gone through that. Because now I’m out and living in the community and I’m glad I moved out of there … and it’s just, just incredible.”
Perhaps the most visible anti-institution activists with disabilities are ADAPTers, whose chant “I’d rather go to jail than to die in a nursing home!” has been echoing across America since before I understood there was such a thing as a disability community, but the disability community is all but unanimous on this point.
In the film Hope Is Not A Plan, Brian Tardiff, who supports people with disabilities, reports, “There were six people, all of whom had lived in one of our institutions for many years [and] with the help of many people in the community were able to move out. So I wanted to know how they would feel if, for some reason, they had to go back there. The first person to respond to my question said, ‘I’d probably kill myself.’ And then, that was what you heard from everybody who was part of that conversation.”
I have, on the other hand, known plenty of people who have made their peace with institutionalization because they thought they had no option. I have known people who thought it was the only way to get the supports they needed without arduous work they felt unequal to. I have known people who thought institutionalization was the least bad of a set of lousy choices. I have known people who have given up.
Dick Sobsey has spoken about experiments on dogs who are shocked by electricity through their cage floors. “What they discovered was that if the dog was in a situation where they really couldn’t escape from an aversive stimulus for a long enough time, they would just basically stop trying and effectively they became extremely passive and just allowed themselves to be shocked.
“Now, for people with disabilities who have been in institutional settings, etc., we also see the development of learned helplessness, and in the most extreme circumstances it actually bears an amazing similarity to the experiments that they did with dogs in the 1970’s.”
“In order to change the old attitudes, we gotta get out in society,” independent living leader Ed Roberts once said. “We’ve gotta be seen. We gotta be the neighbours. We gotta be the lovers. We gotta be the friends. We’ve gotta be seen in a very natural way. Disability’s a part of life, and some of us are going to have it. And some of us are gonna have it young, and some of us are gonna have it older. But whenever it comes, our job, you and I, is to make sure that we know that we don’t have to put somebody in an institution. That we can have high expectations of them and their future. And that by helping them begin to take control of their own lives, they can go back to work, or go to work, or do – dream what they want to dream and make their dreams come true. Like we all do.”
There was a time when state schools like Willowbrook and Pennhurst and Fernald were considered the best places for people with intellectual and developmental disabilities, and VOR was there to defend them as they fell out of favour. There was a time when Intermediate Care Facilities like the ones VOR is currently defending were considered the best. There was a time when small group homes were considered the best place. Today “intentional communities” are in vogue.
What all of these settings have in common is what Roland Johnson, himself a survivor of Pennhurst, got at all those years ago: “Who’s in control? I want to know … are you in control? Are staff in control? Well, I understand that you need to be in control. Some of [you] are not in control because staff tells you what to do…. I don’t believe that you are in control over your life…. You … are supposed to be in control of your life.”
Whatever the advantages of institutionalization may be – and there are institutions with some positive qualities, places where dedicated staff do their best – human beings are meant to be self-determining individuals. The presence of impairments that make self-determination harder means we must work harder to support that most basic of human rights, not that we may turn our backs on it and institutionalize people. Institutions by their very nature negate freedom and self-determination. They are not good for people, as Jensen Caraballo’s story reminds us.
Caraballo was admitted to a nursing home when he was fifteen, “only … for a month,” and ended up staying close to six years. “I just sat in my room for hours, not knowing what to say or do. All I kept thinking to myself was, ‘I can’t wait to get out of here.’” It wasn’t until he was 18 that Caraballo “realized I had other living options after talking to a friend of mine that worked at the Center for Disability Rights. That’s when I decided to fight for my freedom.” Not only would he not choose to go back, but he now spends his time fighting to get others out of institutions.
Furthermore, while there are some positive features of some institutions, any support that can be provided in an institution can also be provided in a free setting.
VOR specifically mentions people with “challenging behaviour.” In video from the same conference where Roberta Gallant spoke, self-advocate Bryon Murray reports, “You know, when I travel, I hear a question: ‘what happened to people with the really bad behaviour? What happened to people who hurt themselves or hurt others?’ Supports! If you take the Bryon that you see today, 11 years ago I’d be slamming my head towards the wall. I’d be biting people because I feel trapped. I’d be running away. Run. Don’t understand. Don’t understand what traumatic brain injury does. Don’t understand disabilities. Not accepting it, denying it. Then when I got my supports, this is who I am. You know what? Instead of asking that stupid question, ‘What happened to people with behaviour?’ – okay, what kind of supports do they need? What do we need to come up with? What is the plan that needs to be done? You know, figure it out. Don’t just sit there on the problem. Find the solution!”
Like Roland Johnson, a one-time President of Speaking For Ourselves, the great disability rights leader and Olmstead victor Lois Curtis, an artist with an intellectual disability, was one of the people who paved the way out of institutions for so many, by filing a lawsuit protesting being held in a psychiatric institution even after she had been approved by her treatment team for a more integrated setting. At a press conference later, she told people her address over and over again: having a home, having an address was that important to her. VOR filed an amicus curiae brief opposing Curtis; they were wrong then and they are wrong now.
The independent living movement provides us with clear evidence that highly trained specialists are not required to support people with disabilities. Only a small amount of that training is needed for any one individual, and there are highly competent people without extensive medical training doing that work every day for members of the community. In fact, as service users point out, it’s better to start with someone with no preconceived ideas about disabilities and train them. People steeped in the medical model of disability – as medically trained workers are – have preconceived ideas. They tend to view people with disabilities in terms of deficits rather than just as people, and that viewpoint is one of the biggest barriers people with disabilities face.
Again, as Roland Johnson so powerfully pointed out, in institutional settings, the staff – the people who take the deficit approach – are in charge and in control. That’s not how it works in independent living. Jesús, a personal attendant, reports that “Definitely you have to understand independent living philosophy when you have this kind of job. You don’t have to be a doctor, or a nurse, you don’t have to cook well. You just have to know that you are a service to the user, so it’s as he says. We can talk about it, right? We’re people. But if he likes it that way, I just do it.”
We don’t need to shelter people in institutional settings under the command of a medicalized staff. “I truly believe each person’s different,” Jesús says. “So in personal assistance, training should be provided by the user, right?” We need to better connect people with intellectual disabilities with the independent living specialists who already exist and are already ready to serve the entire disability community, so we can figure out ways to adapt the process of hiring, training, managing and firing personal assistants so that it works for a much wider group than already has access to it. We need to do that now, because people are dying on waiting lists to get into the community. People are dying waiting for freedom.
To answer that most fundamental human need, we need to change the system of support provision.
VOR talks about the importance of surrounding people with disabilities with a highly trained and professional, caring staff. Geraldo Rivera, who brought the conditions at Willowbrook – at state institutions for people with disabilities in general – to public attention, later said, “There is no place where you can mass-produce care, compassion and concern for people. It is impossible. It is fundamentally unsound. The assembly line works for cars, it does not work for people. People need humanity…. They need to be able to fulfil their potential, whatever their potential is.”
Two important criteria for fulfilling one’s potential are the presumption of competence, or the basic default assumption that you are a capable person who can and will benefit from the same things as anyone else as opposed to a basic default focus on you as a person with deficits, and the dignity of risk, or freedom from protective systems that attempt to ensure you will never get hurt. Nobody is completely competent in all settings, and sometimes people do get hurt. But these are things the enabled population so take for granted that they do not even recognise how important they are, and their absence hurts us far more deeply than the people who wish to strip us of them can possibly imagine. VOR’s “degree of disability” argument is a presumption of incompetence for some people with disabilities; its safety argument is an imposition of the indignity of protection.
It’s easy to look at some people with disabilities and think, “They’ll never be able to direct their own lives.” But people will surprise you. Properly supported people are capable of more than anyone ever thinks they are when they are unsupported. And some people are capable of truly astounding things. The presumption of incompetence, or the basic default assumption that it’s not worth trying because of the extent of a disability, is itself what produces the incapacity VOR is using to defend not trying. Protection, too, when it is imposed from the outside on the basis of low expectations, becomes a prison rather than a haven.
Moreover, the protection doesn’t work. Institutional settings are rife with abuse. Jennifer Msumba’s powerful story of being at the Judge Rotenberg Center (J.R.C.) is unique only in that she was subjected to aversives, which many institutions avoid, and in particular the G.E.D., a skin shock device used only at J.R.C. The behavioural control and dehumanization – and the resulting trauma – Msumba describes are repeated in many places.
In the film Hope Is Not A Plan, Tim Stainton from the University of British Columbia Social Work Department says, “Well, I think the evidence about abuse in institutions is pretty strong from a couple of perspectives, that … you can go back as far as the earliest institutions and really, pretty well, any time anybody has bothered to look deep enough or scratched the surface, they have found evidence of abuse. And that goes right back to the very first institution for people with intellectual disabilities in Switzerland, in a place called Abendberg, back in the mid-19th century. And that pattern has been pretty consistently repeated across countries, across eras, across jurisdictions, and across populations. It’s nothing particular with disability, but it does seem to be something inherent in institutions themselves, whether they’re for the elderly, people with disabilities, for children, residential schools. So I would say the evidence is pretty compelling that there is something in the nature of an institution that tends to engender abuse.”
As I was beginning to write this post, two stories happened to come across my newsfeed. The first concerned a man who had been neglected in a group home to the point that he had an infestation of maggots in his throat. The second concerned an overwhelming pattern of abuse in state institutions in Washington State. “The 2016 reports read like documents from the 19th century when people with Down syndrome, autism, or other disabilities were isolated in asylums and often neglected,” reports Tacoma, Washington’s The News Tribune. That’s not that surprising. Each generation of institutional survivors is told that things have gotten better and there is no more need to worry. It happened to members of the self-advocacy group Project Two in 1979 when they investigated the alleged abuse of Jonathan Allen, then age 10, at the Beatrice Developmental Center; it has happened to me for years; it happens to everyone. But the abuse and neglect continue.
The stories of abuse I saw this week are not isolated. In fact, there is story after story after story of neglect and abuse, story after story of huge patterns of neglect and abuse, in institutional settings – and this despite the fact that reporting rates are incredibly low and privacy laws prevent most of the stories that are reported from ever becoming known.
There is no way to guarantee that someone won’t be abused, but there are things that can be done. You don’t build a small enclosed environment and try to make it safe. You introduce the people you want to protect to other people. You make sure they are known. People hurt objects rather than other people, so to protect someone you support them to meet and socialize and live alongside others; you ensure they are known as fully human beings. You protect people best by integrating them into the community and making sure they have relationships with others who care about them.
Finally, VOR suggests that institutionalization provides the best route to community integration. The argument they are making is that a fairly large staff associated with a fairly large group in congregate housing is best positioned to take people on regular outings into the community.
But regular outings in your self-contained group is not community integration; it’s community tourism.
Community integration is relationships. It is reciprocal, equal friendships, which are simply not possible with staff. People need to be able to get out into the community with support workers and make human connections with people who have things in common with them, and to do that, they need their own, not shared workers. They need to be able to connect one-on-one with the people in their communities, and to do that they need to be able to go out into the world on their own, without dragging four roommates along with them.
Judith Snow told a story about a 14-year-old boy named Peter, a young man who could not predict much about what was going to happen around him and who was beginning to understand that the world held few possibilities for him. He was withdrawing. Because his parents had the resources, they hired a support worker named David for him, and together the two of them began to explore their city, Toronto.
“There was some direction to their travels but not much. They created a list of friends’ homes to visit on a frequent basis. They tended to follow the subway line because David doesn’t drive. They often dropped in on coffee or doughnut shops or grocery stores because there their presence wouldn’t be remarkable and because Peter likes food. Here and there they found jobs that they could do for neighbours like sorting stuff or stowing boxes. Often they seemed to be just wandering.”
Together they looked for places for Peter to be. They began to find people who would welcome him and to whom he responded. They found an alternative school, where Peter participated in a mainstream sound poetry class. And as Peter grew into a man, David supported him in making a community for himself.
When Peter was 17, he and David left the school, and Peter began to volunteer at various community organizations, and then joined a church, where his presence slowly affected the congregation and its approach to disabled people. It began to actively work to prevent people from being forced into group homes and nursing homes.
“All this is the result in good part of the presence and participation of Peter,” wrote Snow, “a young man who has never spoken and who is labeled by health professionals as severely mentally r*****ed. Yet within the space of less than 6 years and while still in his teens Peter’s impact on his community rivals that of most mature, active, capable and able-bodied, adult citizens. Peter has been a poet, food handler, odd-job man, messenger, neighbourhood organizer, peace activist, community builder and evangelist. He has never acted alone but few successful people do. David and others have been key to every development, but the impetus has come from Peter.” Reading Snow’s story, it is clear that the supports Peter’s family offered him have enabled him to have a meaningful, integrated and free social life despite significant communication difficulties.
Not only is community integration an emotional need, it is protective. The more people who know you and care about you, the more likely someone is to notice that you are being harmed, and if you are, the more likely people are to take action to stop it.
“The anxiety and fear that families feel for the future of their family member with developmental disabilities is real,” Amber Smock, who leads the Advocacy team at Access Living in Chicago told me, “and [it] should not be brushed aside.” But she also pointed out that “pro-institution advocacy has taken away funding and attention that could have been invested in improving the community setting.”
In the absence of the strong supports in the community that funding and attention could have built, people are forced into institutions and are unable to leave all the time – the absolute opposite of good support. That needs to change. It’s time to reject the VOR approach to people with disabilities. One step that is important right now is to pass the Disability Integration Act (D.I.A.) and get people out of institutions and into integrated, free settings – with supports – where their access to housing is not dependent on their acceptance of services they may not want.
People with disabilities exist throughout society. If you are a nondisabled person, you still have disabled family members, friends, neighbours, classmates, and co-workers. You meet people with disabilities in stores and at restaurants and in the public parks. We could use everyone’s support on this one.
Here is a longer Canadian film that addresses very clearly the experience of being institutionalized.
Here is TASH’s fact sheet on the D.I.A.
You can track the progress of the D.I.A. at this site.
If your organization would like to support the Disability Integration Act, click here.