What I’ve learned in the five years since then is that parenting Edmund boils down to one major issue: Do I want to change my son so he can fit into the world, or do I want to change the world so it accepts my son as he is? I have learned I should strive for the latter.
Why is fairness to people with disabilities a different problem from fairness concerning other protected attributes like race and gender?
Disability status is much more diverse and complex in the ways that it affects people. A lot of systems will model race or gender as a simple variable with a small number of possible values. But when it comes to disability, there are so many different forms and different levels of severity. Some of them are permanent, some are temporary. Any one of us might join or leave this category at any time in our lives. It’s a dynamic thing.
I think the more general challenge for the AI community is how to handle outliers, because machine-learning systems—they learn norms, right? They optimize for norms and don’t treat outliers in any special way. But oftentimes people with disabilities don’t fit the norm. The way that machine learning judges people by who it thinks they’re similar to—even when it may never have seen anybody similar to you—is a fundamental limitation in terms of fair treatment for people with disabilities.
“VoiceOver is on the iPhone. They did it. They did it. They did it.”
“Here in one, one day, in one fell swoop, they’ve changed everything.”
“I went to the AT&T store and I bought myself an iPhone, and I was so mesmerized,” Sawczyn says. “I was able to do this at the same time as other people were buying their phones. I didn’t have to wait for a new version of software to come out, or an update to be made, or someone sighted to help me. I could just go to the AT&T Store, buy my device, go home, plug it in, and with iTunes, I could start up VoiceOver and the thing just worked great.”
“The accessibility of the iPhone changed my life, because now I’m working as a professional software developer,” Quinn says.
Great piece on the addition of VoiceOver to the iPhone ten years ago.
When I finally turned to social media, I found that the recommendations I’d been given for how to care for Edmund were incomplete and ignored the crucial perspective of disabled adults. On Twitter, I connected with disabled people for the first time. I devoured their tweetstorms, blog posts, and articles. I started to learn about the experience of disability. Stella Young’s TED Talk on disability, with all her wry humor, made me rethink how disabled people are both sentimentalized and denied basic accommodations. By reading their perspectives, I saw Edmund in a whole new light.
I heard disabled adults argue that disabled kids need to learn agency and independence rather than compliance. They want to ensure that disabled people are accommodated and receive what they need to live their lives. Many disabled people don’t want to be cured; disability is frequently essential to their identities. This is even reflected in how most disabled people define themselves: They often prefer to be called “disabled people” because their disability is vital to their sense of self, whereas parents often say “people with disabilities” because they want to stress that their child’s disability doesn’t define them.
This may seem like semantics, but it reflects the tension between these two groups. Some disabled people resent that parents, not disabled people, are often the spokespeople for disability issues, because their priorities can be so different. Upon facing a diagnosis for a child that entails disability, parents often want a cure. Failing that, they frequently want their child’s disability to at least be less apparent to the outside world. I certainly empathized with this impulse. As parents, we want the world to readily accept our kids.
But when I read an autistic person describe firsthand how painful loud noises are, I began to understand how urgent it is that I protect Edmund from similar pain. I shouldn’t try to “manage” this behavior by coaching him to tolerate the pain, as some other parents and health care professionals recommended; I should instead remove him from a place with noises that hurt him. When I read some disabled people say that they did not want to be cured, that their disability was a part of who they were, I thought that perhaps Edmund felt that way too and was unable to communicate it. Julia Bascom, executive director of the Autistic Self Advocacy Network, writes movingly of the fear and pain of being forced as a child to stop flapping her hands: “Not being able to talk is not the same as not having anything to say.”
I am repeatedly struck with the realisation that carers are unnecessarily complicating childhood and family life – while believing they have no choice. They would probably say that it isn’t their fault, autism did it. Or that they’re just trying to help their child to succeed. Or that noone else can understand (“Walk in my shoes!”). After many years of hearing this same bullshit, I realise it simply isn’t true. Autism didn’t make your kid’s childhood disappear – them being put into hours of therapy every week did that. Autism didn’t make your child feel like someone was always watching them – the constant attempts to correct their natural ways of being did that. Autism didn’t make your child stressed – ableism did. You did.
The movement that I want to see, is one toward more simplicity for our disabled children. Autism isn’t destroying your children – you are. And you can’t stop doing it if you won’t evaluate your role in it.
“Disability studies prevent disability dongles.”
“I honor the friction of my disability.”
Yes! Another great talk from Liz Jackson.
Instead, the college admissions scandal should draw attention to a different problem: That the companies that develop and administer standardized tests have no empirical basis for placing such an emphasis on speed. Yet these companies do put a terrible premium on speed, even though the notion that faster is better has been debunked: In fact, a student’s scores on such exams correlate in a perfect linear relationship with socio-economic status rather than with a student’s ability to solve difficult problems.
Stringently timed, high-stake tests have an adverse impact against racial minorities, women, those with low socio-economic status, non-native speakers of English, older applicants, and people with disabilities. Of course, that adverse impact is further exacerbated when the ultra-wealthy cheat to inflate their children’s scores.
Sometimes it takes another person with your specific disability label, not another neurotypical teacher or peer, to help the world understand your experience. One of the first books I read about autism was Donna Williams’s memoir Nobody Nowhere: The Extraordinary Autobiography of an Autistic (Jessica Kingsley Publishers, 1998). One of her observations has always struck me as particularly apt: “Communication via objects was safe,” Williams says. For me, computers are objects that can be a bridge to interpersonal connection and growth. Those are things we all want, regardless of our differences.
Being disabled means hundreds of thousands of people believe they always know better than you do. I’ve spent my life—both before my epilepsy and autism and mental illness diagnoses and after—listening to authority figures and peers tell me who I am.
Disabled allyship rarely extends to those who are actually disabled. We answer their questions, and they choose not to listen.