Sticks and Stones

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

Autism Awareness Month

To the larger disability community,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks again for your interest in reaching out this April!

Against A.B.A.

Let’s talk A.B.A., neurotypicals.

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

Autistic adults have some concerns.

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

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

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

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

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

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

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

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

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

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

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

#TheRealTragedyOfAutism

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

 

Please don’t read this.

 

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

 

   

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

 

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

 

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

 

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

 

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

 

Rights and Representation

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Degrees of Disability

 

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

 

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

 

“How r*****ed will the baby be?”

 

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

 

“Will the baby be deformed?”

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

The “Need” for Institutional Care

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Safety

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Community Integration

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

What’s Next?

 

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

 

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

 

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

 

Thank you.

 

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

 

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

 

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

 

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

 

Take action.

 

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

Stones

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

 

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

 

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

 

Mom cries.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

“It was the worst mistake of my life.”

 

She sobs.

 

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

 

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

 

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

 

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

 

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

 

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

 

She is still sobbing.

 

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

 

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

 

***

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

***

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Then you see it.

 

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

 

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

 

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

 

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

 

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

 

***

 

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

 

It does not persuade you.

 

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

 

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

 

 

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

 

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

 

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

 

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

Mike Pence

I can see gods today.

Not in gilded dining rooms
and marble corridors.

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

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

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

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

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

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

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

Because Medicaid is Investment in Freedom

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

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

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

~~~

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

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

~~~

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

~~~

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

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

~~~

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

 

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

 

We have the right to life:

 

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

 

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

 

We have the right to liberty:

 

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

 

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

 

We have the right to the pursuit of happiness:

 

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

 

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

 

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

 

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

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

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

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

~~~

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

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

YOU CAN MAKE A DIFFERENCE.  HERE’S HOW: 

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

 

 

 

Senator Young, Please Oppose the Bill

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

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

 

Dear Senator Todd Young,

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

 

 

Niko Boskovic and the Order of Exclusion

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.

The People’s Summit and Disability

To the people I saw getting off the train at McCormick Place today:

You looked eager and energized and hopeful. I hope you have a great time at the event. Since The People’s Summit has decided not to bother implementing a system for providing access to disabled people and has informed me that I — and many other people, including 50% of Americans over age 70 — am being excluded from every single breakout group, I am not there. The People’s Summit wants to tell me this is about not having the resources to treat disabled people as equals, but that’s not true. It’s about how they chose to spend the resources they had. They chose not to build an access system into registration, which is how events like this successfully ensure access, and they chose how to spend money on access without even finding out what access was needed — basically, operating as if there was no way to find out who was coming and which parts of the event they wanted to attend. It’s not that there aren’t sometimes legitimate problems around access; it’s just that that’s not what happened here. This was a choice.

One in five non-institutionalized Americans has a disability. One in ten has a severe disability. And that’s not even counting people in institutions. On Monday I attended a rally to address the fact that the current administration wants to prevent disabled people from getting necessary health care. We’re looking at 17,000 preventable deaths next year according to one estimate. On Tuesday I attended a meeting where we discussed the fact that many of our elected officials are happy leaving disabled people in institutions rather than providing cheaper, better, care in the community. There are 19,000 people on a waiting list to get out of nursing homes — not even institutions for any other group of disabled people — in Illinois alone. On Wednesday I was studying the suppression of sign language and the Deaf community, and the response that community has had to persecution, and figuring out how to use what they have taught us. On Thursday I was talking with people about the torture of disabled children on the taxpayer dime and what to do about it. On Friday when I came off the Metra, I had to contend with the fact that Metra employees blocked the doors to the elevator off the platform so that people who walk can get through and people in wheelchairs can’t. This weekend I am not with you because the work I do, the issues I bring to the table, and the knowledge I have gained over a lifetime of this sort of thing are expendable. Instead, I am at the library, working alone.

This was done in your name, and with money you spent (and with money I spent as well, because they didn’t bother to tell us they weren’t going to provide access until after we paid, and nobody has offered a refund, much less to cover the expenses I incurred so I could attend). I don’t know how many of you agree with the decision, but the next time you are upset about an election that you almost won, please do me a favor. Ask yourself how much work isn’t getting done because the people who would love to do it are being denied the opportunity. Ask yourself how much support you aren’t getting because you are ignoring potential supporters. Ask yourself whether it’s really true that members of minority groups are expendable in this movement. Ask yourself whether you can build a movement that wins while you behave this way. I don’t think you can.

I’m sorry I am going to miss out on meeting you and learning from you and making connections with you. I am also sorry you are going to miss out on meeting me, learning from me, and benefitting from my desire to contribute to the important work you are doing.

I really hope it’s a great event. But no matter how great it is, it could have been better, because it could have been inclusive. I would have loved to have been able to see that.

Cal Montgomery