Disability Futures

My son Leo got his first iPad in May 2010, when he was ten years old. And, as it did for many other autistic people, the tablet transformed his learning and play experiences. In unprecedented ways. He continues to rock that iPad, ever since.

My understanding of why Leo and iPads are so suited for each other has evolved over those five years. I now understand that it isn’t just his iPad’s icon- rather than text-based interface that makes it Leo-friendly; it’s also its simplified, consistent grid app layout, which allows Leo to rely on motor planning as well as visuals. That motor predictability is a crucial factor for an autistic dude whose body doesn’t always do what he wants it to do.

And iPads don’t just allow Leo to make his own choices; they allow him to make choices at his own pace. 

This post is a version of the presentation Lainey Feingold gave in March 2015 at CSUN – the International Technology and People with Disabilities conference held annually in San Diego, California. The conference is sponsored by California State University Northridge (CSUN). The presentation covered legal developments in digital accessibility since CSUN14 (March 2014 through March 7, 2015). The slides shown during the presentation are available on SlideShare. Go to the powerpoint version of this presentation on the Slideshare website now.

This post is part of an occasional series about recent legal developments impacting technology and information access for people with disabilities. The series is illustrated by a toolbox — because law has proven an effective tool in improving the accessibility and usability of digital content, print information and technology for everyone. There are many ways to use the law, reflected by the many tools in the toolbox.

Parts of the update below were included in earlier posts in this series. You can find those posts in the Legal Updates Category of this website. Follow the Law Office of Lainey Feingold on Twitter for legal updates related to information and technology access, particularly for people who are blind and visually impaired.

Invisible groups frequently have their needs and causes made invisible too by people who declare them as illegitimate or unreal. Trans women of color are murdered at an astonishing rate for the crime of existing, and yet this is trumped by gay marriage as the most visible LGBT issue in the media.

Some people feel that not being visible as queer or disabled actually gives one a certain privilege. They’ll insist, for example, that bisexual people actually have it as easy as straight people because bisexuals have “heterosexual privilege”. Since bisexual people can appear to be straight, they argue, bisexuals receivethe same benefits that straight people do like social acceptance for who you are, the ability to be open about your relationships, and freedom from workplace discrimination. This leads to some folks accusing bisexual people of being inherently homophobic — since they get the same privileges as straight people, they must also be part of the same oppressive system that favors straight people too.

Neurodiversity (the word) is derived from the combination of neurology, and diversity.  The fusion of the two words is smooth; they amalgamate without a tussle just as their subjects do in real life.  The conjugate recognizes a reality that’s been part of humanity for all time – neurological diversity.

People exist on all sorts of continuums.  Intelligence . . . eye or skin color . . . disposition . . . height and weight . . . pick a human trait and there is a range of “typical.”  We describe people on the basis of what we can see, measure, or describe.  Bob has a dark complexion, Sal is tall, and Jen is exceptionally bright. 

Individuals who are within the accepted range are described as typical.  If it’s their neurology that’s typical, they are said to be neurotypical. While there is a certain comfort to “being in the middle of the range,” and such people may be bright and capable, the odds of true exceptionality among the most typical are by definition smaller because exceptionality is less often found in the center of any range.

For over ten years Martin Pistorius was trapped in his own body, fully cognizant, but unable to speak or move. He was surrounded by people who believed he was incapable of thinking and tried desparately to get just one person to notice. His story serves as a wake-up call for all of us to drastically change our assumptions about speech and intellectual capacity as well as the need to radically reform expectations and treatment of people with communication impairments of any kind.

Martin Pistorius’ honest and chilling account of the abuse he endured exposes the harsh reality for many disabled people who do not have a means a reliable means to communicate . At the same time, it’s a story of his remarkable will and strong faith in unimaginable circumstances.

Martin is not the first person presumed incompetent because he cannot speak with his mouth. He is simply able to tell his story now because he was given access to communication. How many “Martins” are waiting right now for someone like Virna to see them as human, to talk to them, to notice the subtle ways in which they are constantly communicating?

Recently, the U.S. Department of Education broke out four-year graduation rates for different student subgroups as of the 2012-13 school year. My colleagues over at Politics K-12examined the numbers for students eligible for free and reduced-price lunches and for students who are ethnic and racial minorities. But let's take a closer look at what the numbers show for students with disabilities, and the cautions one must take when analyzing these figures.

The graduation rate for students with disabilities was 61.9 percent. But the rates in individual states can vary widely—from 22.5 percent in Mississippi to 80.4 in neighboring Arkansas—as you can see from this handy map:

I want to focus on the problematic TASH response to our concerns.

Here’s the TASH letter: The Continued Debate about Facilitated Communication: A Response from TASH’s Executive Director and President of the TASH Board.

The first problem is not the letter itself, but the original issue of the RSPD. It called for researchers to submit articles in favor of, or opposed to, FC. It is inaccessible. There are not many of us in academia. Our stories and experiences might be dismissed as “just anecdotes” but this how we experience our progress, the changes FC brings to our lives, the day-to-day message-passing that we don’t need to record, report or have validated by every single Very Important People, usually privileged, non-disabled people, who call themselves “experts”.

I could not read the journal. For many reasons, I am not a TASH member, and I believe the journal is only available to members. I rely and trust the reports I’ve got about the articles though. I will make a guess (in my experience with these types of articles, I am likely correct) that the skeptics wrote the articles based in data from other skeptics, and none of them has probably never met the subjects of the research.

And there are plain lies based on bias (facilitator ALWAYS leads FC user – ALL facilitators, ALL THE TIME). TASH should have condemned the RSPD right there. Yes, there are unethical facilitators, as facilitators are human. But unless TASH believes everyone who is not a facilitator has never, ever cheated, lied or deceived in any way, the bias is not only from the researchers. It is also from TASH.

ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help combat disability-based discrimination in organ transplantation.

As ASAN found in our 2013 report, when people with intellectual and developmental disabilities need an organ transplant to treat a life-threatening condition, they frequently face barriers to receiving this lifesaving care. Doctors and transplant centers may refuse to approve organ transplants for people with disabilities who might need help in order to follow complicated post-transplant treatment plans. Others may refuse to approve transplants for people with disabilities based on the belief that, when deciding who should receive an organ transplant, people without disabilities should have a higher priority.

ASAN’s toolkit on ending discrimination in organ transplantation provides resources for advocacy both on an individual and a system-wide basis.