Self-Advocacy

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

/ montgomerycal / 2 Comments

 

Please don’t read this.

 

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

 

   

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

 

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

 

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

 

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

 

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

 

Rights and Representation

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Degrees of Disability

 

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

 

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

 

“How r*****ed will the baby be?”

 

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

 

“Will the baby be deformed?”

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

The “Need” for Institutional Care

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Safety

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Community Integration

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

What’s Next?

 

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

 

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

 

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

 

Thank you.

 

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

 

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

 

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

 

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

 

Take action.

 

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

Stones

/ montgomerycal / 3 Comments

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

 

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

 

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

 

Mom cries.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

“It was the worst mistake of my life.”

 

She sobs.

 

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

 

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

 

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

 

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

 

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

 

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

 

She is still sobbing.

 

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

 

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

 

***

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

***

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Then you see it.

 

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

 

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

 

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

 

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

 

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

 

***

 

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

 

It does not persuade you.

 

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

 

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

 

 

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

 

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

 

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

 

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

Niko Boskovic and the Order of Exclusion

/ montgomerycal

I wrote this for NOS Magazine, but they were unable to take it. It’s a little dated now, but I think it’s still worth posting. Hope you like the links!! – Cal

 

By now you’ve probably heard about Niko Boskovic from Oregon.

He’s a teenage blogger who entered an essay contest for a spot at an international gathering of high school students at the United Nations, where they will get to know one another and the U.N. It’s called the U.N. Educational Pilgrimage for Youth, Inc. (UNEPY). He won. “I rely on a letterboard to communicate,” Boskovic, who is autistic, told me.  Doing something similar to what J.J., the teenage character on Speechless, does, he spells out words independently, and someone who is trained to support his letterboarding – a family member, teacher or aide, or a classmate – reads them aloud and/or writes them down so that people who aren’t comfortable reading letter by letter can understand him.  So his family requested that his mother be allowed to accompany him as a support person, and the family prepared to pay for her expenses out of pocket. “They should have let me participate with my mom supporting my communication, and looked at it like an opportunity to bring insight that has been missing for the entire duration of the program.”

The UNEPY organizers did not seem to grasp the request for reasonable accommodation.  Instead, they informed the family that Boskovic and his “chaperone” – a word which suggests they believe she would be there to limit his freedom rather than promote it – would be excluded. Although the program has not put its reasons in writing, Boskovic’s mother, Loreta Boskovic, told Oregon’s Fox 12 TV station that the gist was, “We can’t support people with disabilities. We’ve had people in wheelchairs before. We’ve turned them away too.” UNEPY did not respond to a request for comment for this story.

An attempt to reach UNEPY itself for comment was not successful, but it is run by one of the loosely associated lodges of the International Order of Odd Fellows (IOOF) and on April 30, in a public notice on a Facebook page, the IOOF reminded the world that, while they do not speak for UNEPY, “The UN Pilgrimage is mostly a ‘volunteer-run’ event. One of the reasons [for Boskovic’s exclusion] is probably because most of the volunteers are not equipped to handle special needs children and the risk involved if something happens to the child during the tour. ‘IOOF is damned if it does, IOOF is damned if it does not.’ If it does allow and something happens to the child during the tour then IOOF will be sued and blamed why it allowed the child to participate when it is aware that it does not have volunteers who are well-equipped with the skills and training to handle special needs child [sic]. If it does not allow, then it will be blamed and accused of discrimination. This is the price of democracy.”

Actually, that’s not the price of democracy. It’s part of the price of the struggle for equality.

The authors of that message are also completely missing the fundamentals of disability rights. If Niko Boskovic had participated unsupported and “something” had gone wrong that justified a lawsuit, his parents would have sued for failing to accommodate him, not failing to discriminate against him. If support is available to neurotypical participants, it should be available to neurodiverse participants as well. Nor is it possible that the real issue is that there was no-one to support Boskovic, since the accommodation he requested and was denied was the opportunity to provide his own support. Turning away a delegate who had already qualified to participate is not okay.

Fear of litigation, however, is not a new reason for the exclusion of disabled people. In fact, it is a major reason for the severe underemployment the disabled community faces.

Some members of the IOOF Facebook page have pointed out that IOOF members have a history of supporting Autism Speaks and autism awareness, perhaps in the mistaken belief that this demonstrates their support for autistic people. This may be part of the problem, as Autism Speaks is known, among other things, for excluding autistic people, both from leadership positions in the organization and from the benefits of their fundraising. And in the past they have certainly promoted the idea that “something” might happen.

Many other IOOF members, however, have spoken up for Boskovic. “I find it so unacceptable I will not leave any stone unturned until I find the correct answer and this is been taken care of so as a past grand of [my lodge] know that I will be making contact throughout odd Fellowship to find out more about this travesty,” one member posted to Facebook. Another stressed that there are disabled Odd Fellows. Boskovic himself reports that all the lodges in Oregon support him and requests that supporters thank their local Odd Fellows.

Filmmaker Dominick Evans, a disability activist and father of an autistic activist-in-training, agrees. “I think it’s BS. He won the contest. He shouldn’t be excluded because of his disability.”

UNEPY should have predicted that it wouldn’t be that easy. Niko Boskovic’s essay had warned them about his passion for justice. volunteers are “not equipped” with knowledge and skills to handle special needs children and the risk involved if something happens to the child during the tour.

We can only hope that the Executive Director of the UN Pilgrimage or the Sovereign Grand Master (if he is involved in the decision-making) to release an official explanation.

His family contacted Oregon’s Protection & Advocacy system, Disability Rights Oregon for help. “I haven’t seen anything this blatant in a long time,” Boskovic’s lawyer, Gordon Magella, told a KOIN 6 News reporter. “You know, it’s 2017. The ADA has been around for almost 30 years, and to see something so profound and blatant was just surprising to me.

In fact, it’s even worse than that. The Odd Fellows are a group you might expect to be inclusive. There’s a lot that’s cool about them. The group derives from a centuries-old tradition started in Britain to address problems arising from the Industrial Revolution. The American version “has focused on visiting the sick and providing members and their families with disability, illness, and death benefits—programs similar to Social Security, unemployment, and Meals on Wheels. It’s ironic that an organization long committed to serving people with disabilities would exclude a prize-winning student from a trip to the United Nations simply because he has autism and relies on a support person to communicate on an equal basis,” Sarah F. Rose, an associate professor at the University of Texas at Arlington and author of the recent book No Right to Be Idle: The Invention of Disability 1840’s – 1930’s told me. So how did this happen? It’s worth noting that they stress charity. Perhaps it’s the organization’s grounding in a charity model of disability rather than a rights model that has led UNEPY organizers to this point.

But the exclusion of people with disabilities is not rare. Recently another case was in the news: Megan Wolanyk, a California student who uses a wheelchair, was  left behind when her classmates went to Disneyland, because her school had rented a bus without a lift to transport them. Most situations are never publicized. Decades after Americans won civil rights protections in education, housing, employment, and all areas of life, exclusion not merely remains but is championed and advanced. And while Niko Boskovic is weathering this affront, not everyone else is as successful.

Exclusion is an important risk factor for depression in disabled kids. “Despite all the many challenges these children face in relation to their chronic medical or developmental diagnosis, being bullied or excluded by their peers were the factors most likely to predict whether or not they reported symptoms of depression,” Margaret Ellis McKenna, MD, a researcher at the Medical University of South Carolina is quoted as saying in a story on the American Academy of Pediatrics website.

In fact, as Dominick Evans stresses, exclusion can be deadly, for both kids and adults. “Exclusion is a major catalyst [for suicidality], especially when it happens consistently over and over again.” It’s a part of “all the crap we hear about how disabled lives are not worth living or how disabled lives are too hard to lie.” And all the crap is not true: while this comes as a surprise to many nondisabled people, disabled people with adequate social and environmental supports often report a very high quality of life. Evans is a member of the team at the Center for Disability Rights that recently unveiled #LiveOn, “an anti-suicide story project, where disabled people, including those with invisible disabilities, chronic health disabilities, and neurodiverse people, tell their story and encourage other disabled people to keep on living.”

Anita Cameron, an autistic disability rights activist and Not Dead Yet organizer, who also works on the #LiveOn project, told me that this the initiative is similar to the It Gets Better anti-suicide project. “It shows that life as a person with a disability can be a good life and that things do get better that if someone is newly disabled that they can carve a good life out for themselves. We’re trying to counter the ‘better dead than disabled’ mentality.”

Indeed, with the support of family, friends, disability activists and Odd Fellows, Niko Boskovic, like so many other disabled people and our loved ones, is continuing to work for justice. “What this decision does is make it all the more difficult for neurotypicals to gain knowledge and insight into what it is like to live with a disability. This, to me, is the real hardship that this decision imposes.” He has made plans to go to New York whether or not he goes as a UNEPY delegate, and has invited President Obama to meet with him “to share my vision of what autistic citizens can contribute to their country.”

It’s good to have you in the community, Niko.