Disability Futures

Crazy Girl in an Aspie World:

Being hypervigilant sounds like some kind of super-power. Instead of waiting to see how someone reacts to what you do or say, just study them hard before doing anything and then make your next move. This has the added advantage of giving you vital extra time to rein in any eccentric actions and to re-read your planned response.

Forest Haven. The name conjures up images of a bucolic getaway hidden from view by tree-covered hills. The reality is much different.

The “haven” is actually a campus of close to two dozen buildings on 200 acres outside Laurel, Maryland. At the peak of its 66-year history, it held some 1,300 D.C. residents with intellectual and developmental disabilities. In 1976, a group of parents sued the city over conditions there. Two years later, a federal judge ordered it closed. In 1991, it finally did. Today it stands abandoned and overgrown.

But even though D.C. was one of the first places in the country to completely abandon the use of institutions for people with developmental disabilities, the broader process of integration has been much slower. D.C. residents with disabilities may no longer live in segregated and isolated facilities like Forest Haven, but they also don’t enjoy some of the same chances and choices — especially in employment — as everyone else.

And while it has been 25 years since Forest Haven closed, the 1976 lawsuit that led to its closure remains in litigation. In February, the lawsuit entered its 40th year, evidence of the long and bumpy road D.C. has traveled in pushing to integrate people with disabilities.

According to most textbooks, our brain is divided into separate areas that are dedicated to specific senses. We have a visual cortex for vision, a tactile cortex for touch, and so on. However, researchers suspect that this division might not be as fixed as the textbooks say. For example, blind people can switch their ‘leftover’ visual cortex to non-visual purposes, such as reading Braille — a tactile alphabet.

Can this switch in functional organization also happen in healthy people with normal vision? To investigate this, Katarzyna Siuda-Krzywicka, Łukasz Bola and co-workers taught a group of healthy, sighted people to read Braille by touch, and monitored the changes in brain activity that this caused using a technique called functional magnetic resonance imaging. According to textbooks, tactile reading should engage the tactile cortex. Yet, the experiment revealed that the brain activity critical for reading Braille by touch did not occur in the volunteers’ tactile cortex, but in their visual cortex.

Anita Cameron has been a longtime activist with ADAPT, and is part of the brains behind Million Gimp March. She was at the Capitol Crawl…. and has been arrested numerous times protesting for our rights.

Leroy Moore is an amazing person… a writer, poet, activist and founder of the Krip Hop movement… The movement explores the realities of disability through hip-hop. He is also a published author, and is strongly advocating to educate the world about disabled activists of color.

Alice Wong is an activist out of San Francisco, who is the founder of the Disability Visibility Project and is one of the creators of the #CripTheVote movement, to get disability on the radar of politicians in the current election. Alice has served on the National Council on Disability under Pres. Barack Obama.

Lydia X. Z. Brown is an autistic writer, law student, activist, and speaker who is one of the leading voices in the call for prison reform, criminal justice reform and exploring how that intersects with race and disability. Their intersectional look at disability, gender, sexuality, race, and gender identity, has led the way for many other intersectional activists, including myself.

Maysoon Zayid is a Muslim American comedian, actress, and all around badass. One of my besties and wing crip, Maysoon has led the charge for inclusion of disabled people in all aspects of life, particularly in the media. Her comedy has introduced millions of people to the idea disability does not limit us.

Judith E. Wilson Burkes is a leader in the disability community who has been advocating for the inclusion of people with invisible disabilities. Judith is a foodie and disability awareness advocate fighting the good fight for all of us crips!

Victoria M. Rodríguez-Roldán is the director of the Trans/Gender Non Conforming Justice Project at National LGBTQ Task Force. Victoria is a trans and mental health activist fighting for inclusion, especially for those with psychiatric disabilities, as well as fighting against mental health stigma. Her work has explored the intersectionality of mental health, disability, and trans identity.

Day ‘Deena’ Al-Mohamed is a disabled filmmaker and activist living in Washington DC. She is working on multiple film projects, including a documentary about the invalid corps, a disabled regiment in the Civil War. Day is a disability and LGBT activist, who is fighting for greater inclusion of people with disabilities in front of and behind the screen. She is also extremely knowledgeable about geek culture, and she advocates for disability inclusion in all artistic mediums, including comic books.

Hamza Jaka is a law student, activist, and a purveyor of geek culture. He has been invited to the White House for his work in disability rights. Hamza advocates for the inclusion of disabled people and proper representation in the media, particularly the inclusion of crip culture in comic books.

Daniel Garcia is a Los Angeles-based advocate working towards inclusion for people with disabilities, with a focus for inclusion in the Latino community. He has advocated against discrimination in all public sectors, including greater access in transportation. He is also active with the Special Olympics. Daniel has done a lot of work in the area of rehabilitation services.

Try this for me. Turn off your sound. Then, for the next few minutes, perhaps 5, I would like you to actually do the following rather than imagine it: go to YouTube and watch a video or two without sound. Choose at least one that has auto-generated captions. Go on, this post won’t be going anywhere.

[sips his coffee]
[sips more coffee][looks at coffee, shrugs, and drinks the entire cup in one go]
[notices you’re back]

Oh! Excuse me.

Well, how was that? I bet you missed out on a lot of information, unless you’re some kind of whiz lip-reader.

You got just a little taste of what a deaf person faces when wanting to watch a video online. Yet if you’re hearing, you can go back and watch that with the sound on, so it’s not exactly the same.

So many videos online, and so much is either not captioned or uses these auto-generated captions that rarely seem to work well. You know how people joke around about auto-correct on our phones? That’s what auto-generated captions often seem to be like. Here’s an example. I blurred the background because I don’t want to play a blame game here:

“Guest Room” is a 13-minute award-winning film that follows a couple with Down syndrome from the bedroom to the pregnancy test and a short way beyond:

Watched it? It’s amazing isn’t it? It nails it on so many levels that it left me speechless for a while.

First of all, to everyone who thinks that all men with Down syndrome are sterile – wrong!Exactly how often men with Down syndrome are sterile is unknown, but men with Down syndrome can – and have – fathered children before.

Moving on let’s talk about a few things that the movie makes very clear:

A child that is white and raised in an upper or upper-middle class home with educated parents will be afforded far greater opportunities than would a child of color, raised in a lower-income home. Having parents who are not educated will further strip the child of some of the opportunity to fulfill potential. This is true of any child in the United States of 2016. I’m going to say that income and education hold more importance than race, but we do live in a country that needs a campaign like #blacklivesmatter for a reason. White privilege is real.

There was an article in the Washington Post recently about parents of a young man with Down syndrome who “saw his potential.” The parents in the article sound fantastic, but the question remained: would a family of less financial means be able to do the same thing? Would other parents have had the health care or been able to afford to take their child to a top foot specialist? Would they be able to get their son custom-designed orthotics every year? What about the annual checkups at Duke?

My point is that the parents in this particular case saw the potential in their son and had the resources to help him fulfill it. But many families don’t have that.

We've heard this same sophistry for decades. The truth is:

• Withdrawing medical treatment may lead to death, but that isn't the intent. Indeed, the point is to stop an unwanted bodily intrusion, not to kill. As Paul Ramsey put it, that is treating the "patient as a person."
• With the exception of a feeding tube, such deaths are uncertain. Sometimes -- if unexpectedly -- people live. For example, Karen Ann Quinlan lived about ten years after her respirator was removed.
• Death is certain in euthanasia and assisted suicide.
• When medical treatment is withdrawn or withheld on request, if it comes, the death is natural.
• In euthanasia and assisted suicide, death is unnatural, e.g., a result of homicide or suicide.
• In contrast to removing unwanted treatment, the intent of assisted suicide and euthanasia is to kill.

Not Dead Yet sees clearly that assisted suicide and euthanasia discriminate invidiously against people with disabilities because they treat them as a disposable caste whose lives are not worth saving if they become suicidal.

The vital distinction between "allowing to die" and "making dead" through homicidal or suicidal means was recognized 9-0 by the United States Supreme Court in the 1997 decision Vacco v. Quill :

[A] physician who withdraws, or honors a patient's refusal to begin, life sustaining medical treatment purposefully intends, or may so intend, only to respect his patient's wishes to cease doing useless and futile or degrading things to the patient when the patient no longer stands to benefit from them. ...

A doctor who assists a suicide, however, "must necessarily and indubitably, intend primarily that the patient be made dead." Similarly, a patient who commits suicide with a doctor's aid has the specific intent to end his or her own life, while a patient who refuses or discontinues treatment might not ...[and, indeed] may instead "fervently wish to live, but to do so free of unwanted medical technology, surgery, or drugs." [Citations omitted.]

Rarely will you hear me praise any politician because rarely do they stick their neck out for a policy that would truly improve disability equality.

So step forward Norman Lamb MP, former Minister for Care and Support, in his advocacy whilst minister of moving support for people with learning difficulties away from institutional hospital settings in the light of the horrendous abuse perpetrated at Winterbourne View. What I particularly liked was the insight in the policy that it was the institutionalised nature of support that created the environment in which abuse could flourish. This is of course what activists for independent living and disability rights have been saying for decades.

It is sad though to see in 2016 the same sort of indifference to empowering models of support that caused disabled people to take up the fight against the “care” system over 40 years ago. Sir, we would be keen to compare notes with you about how to achieve the cultural change necessary, and which has been achieved in some parts of the country.

The clamour of disability activists for “choice and control” over the state support we receive is not just a nice to have, but to remove power from professionals and civil servants who can make decisions contrary to our interests, and hence improve our security and well-being.

The next Winterbourne View – and there will be one – may not be what these professionals intend by operating their unwanted policies of institutional incarceration. But now that they have been told to do otherwise, such abuse cannot be other than on their heads. And the very willingness of the system to institutionalise these disabled people is itself a signal to the abusers that society does not care as much as it should, and offers an unconscious green light for abuse.

Nominations are now open for the first ever  Jamie Showkeir Change-the-Conversation Award .  Please consider  nominating someone and sharing the word with others who might be interested.