Send Me More Stories About Cancer
Dr. Ashley Shew knows the exact date she became disabled. It was six years ago, when one of her legs was amputated and she lost some of her hearing from complications from bone cancer. At this time, her research at Virginia Tech focused around how animals use technology. But after the operation and learning how to use a prosthesis, Shew devoted her academic life to investigating the intersections of disability and technology.
Shew has since published numerous papers, been awarded a National Science Foundation grant and is at work on a book about tech and disability. Her research is intimately impacted by her personal experience with disability (she also has been diagnosed with Crohn’s disease). Outside of academia, Shew writes widely about disability issues, both on her blog Technology and Disability and in publications like Nature.
Folks reached out to Shew to talk about how disabled-focused technologies take off or fail, why disabled researchers make for better disabled research, and why she thinks disabled communities are better prepared for handling the Covid-19 lockdown.
How do you describe your work?
I study from a humanities perspective the experiences of disabled people and how they think about technology. We mostly read things exclusively written by disabled people. We’re not really interested in the things other people say about disabled people. When they explain why and how they’re using technology or what they choose to use and what they don’t, it doesn’t look very much like the ways in which I hear scientists, engineers and designers talk about disabled people, except when those designers, engineers and scientists are disabled themselves.
What are some ways in which non-disabled engineers are missing the point?
There is a large problem of how stories are told about disabled people. There are negative tropes that disabled people are helpless. But not every person who is disabled needs your help. The way in which people go about turning disabled people into service projects can be really dehumanizing and patronizing. We’re interested in capturing some of these narratives. We see that sometimes a designer interviewing a disabled person will still reflect a lot of these tropes. Instead of asking about their lives and what they do, they’ll say something like, ‘What’s the hardest issue you face?’, where you’re already looking for problems in a person’s life, and leading them in a particular way.
There are negative tropes that disabled people are helpless. But not every person who is disabled needs your help.
It gets to the idea that disability coincides with some sort of sadness about one’s life, or that you perform your disability correctly by overcoming it through technological means. Someone always tells us to think about technology as a savior, to wait for the next best thing to come along so that we can somehow be more normalized or be less disabled.
What are some ways in which your disability allows you to do this research in the right way?
I wouldn’t be able to do the research that I do now without being disabled. People who are disabled are more willing to talk to me. I also don’t think it would be appropriate for me to do the research I do if I wasn’t disabled, if I was looking from the outside of the community instead of from within. There are a lot of people who do disability research about disabled people who are not disabled who do so in really problematic ways.
I tell people I’m disabled and sometimes they apologize to me. I’ve been approached and told that I’m inspirational for just standing in the grocery store.
I’ve had these different tropes read onto me. I know what that feels like. Like, I tell people I’m disabled and sometimes they apologize to me. I’ve been approached and told that I’m inspirational for just standing in the grocery store. These are the sorts of bizarre encounters that I don’t think I would really believe if I weren’t disabled, about what people will say and do and how they treat you in regards to technology. Like, when I’m using crutches people pity me a lot more than when I’m wearing a prosthetic leg. And I don’t mind using crutches, especially when no one’s around to watch me. I use a walker sometimes, too. I’m not discounting what disabled people are saying because I’ve experienced these things. That’s not true for all the disabilities I look at, though, which is why I think it’s really important to have friends in the disability community to tell me when things are bullshit.
Can you describe the disability tech industry right now and how it’s changing?
I hope it’s changing but I’m cynical enough that I’m afraid it’s not. If it is changing, it’s because of activism by people like Liz Jackson and Alice Wong. Twitter’s been a pretty effective platform for the disability community because, A). we like to laugh at the same things. Like, there are devices that get created over and over and get touted on the news, and you wait three months and it happens again. This is true for stair-climbing wheelchairs, for ASL gloves, for different types of self driving vehicles and exoskeletons. You see people thinking they’ve created something new, but it isn’t new. It’s been created, it just hasn’t been commercialized, and maybe it won’t be. Disabled people don’t always consume things in the way non-disabled people expect them to. There’s a lot of disability invention that will never become disability technology that’s used every day.
Because of the market?
Yes, but also just because disabled people don’t want what you thought they wanted. When it comes to ASL gloves, A.) ASL is more complicated. You need an interpreter, not just a translator to do that sort of work. But also it simplifies the problem significantly to think that the gloves are gonna make that much of an impact. They’ve been created and recreated. I see a story every few months.
There are devices that get created over and over and get touted on the news, and you wait three months and it happens again
Some things we can’t pay for, even if the technology is good. There was the iBOT wheelchair that could go up stairs. People liked it. It got classified as a transportation device, and not a medical device, so it couldn’t be reimbursed through Medicare, which meant that no other insurances picked it up. That meant that it wasn’t a sustainable business model to have so few people buying the wheelchair.
What are some good technologies, in your view?
People with Ehlers-Danlos syndrome need particular ring splints so that their fingers don’t fall out of joint sometimes. It used to be that you had to go to a specialized person who could work with silver jewelry in a medical context to form splints for your hands. It was a very expensive process and you had to have a diagnosis and documentation. And EDS is probably underdiagnosed, so a lot of people have this issue but can’t get the diagnosis. With 3D-printing, there are different retailers on Etsy who you can send measurements to or they’ll send you a sample and you try on the different options. You can order ring splints for yourself. They’re not as good as the silver made by the specialist and if you can get those, they are the way to go. However, if you are someone who doesn’t have access to a diagnosis, and just needs to keep your finger joints in place, they would work in a pinch. I see that as one of the great successes, a real community technology that’s filling the gap where the medical establishment has let us down.
There are lots of examples of things that have been commercialized that were originally disability-centric technologies. Such as the Snuggie–these were made for wheelchair users.
And there are lots of examples of things that have been commercialized that were originally disability-centric technologies. Such as the Snuggie–these were made for wheelchair users. Also weighted blankets. That was an at-home invention. People put beans into things, they sewed them up and found the weight to help them relax and fall asleep. Now, plenty of companies market these things as helpful, but it was first people with ADHD and autism, and other types of neuro-diversity, that would benefit.
All of your examples are quite simple.
I actually think the things that endure are the simpler things. I have one prosthetic leg. I walk just fine on my non-computerized, pretty basic foot, held on with Velcro. It’s not that exciting, right? It actually takes the same form as the “Hanger leg” that was created after the Civil War. This is not a new technology.
What are you working on at the moment?
I actually think the things that endure are the simpler things.
I just had an article come out this morning in Nature about how disabled people are uniquely positioned for the pandemic and that if academia had listened to us all along we would be better prepared. Now that we’re all in emergency online teaching mode, if we had invested better in making things compliant with ADA law, or even if we considered universal design at all, we’d be in a much better position for delivering content from afar. My larger project is to work on a book about techno-ableism. But I don’t have very many words on the page yet.
How exactly are disabled people better prepared for quarantine?
Disabled people are used to living on a broken clock. My life is built up in increments. I don’t know when I’ll have a flare up. I don’t always think long term. I’ve had two recurrences of my cancer. I’ve had lung surgery twice. Every three months I get a scan. Beyond the scan, I don’t really make for plans or, if I do, I know that they might not happen. For a lot of my non-disabled friends, this has been like a huge change in their lives, but I feel like I’m always expecting something to go wrong. It’s what disability studies scholars call crip time.
What is that?
Crip time is about, in part, forgiving yourself. Your body is what it is. You’re working with what you have. If you can’t make it to all your appointments, it’s not worth hating yourself over it. In some disability communities, crip time is celebrated. We know that people will run late. We know that we won’t always all show up. It doesn’t imply self-pity. But it’s realizing that things don’t run the same way for disabled people.
Crip time is about, in part, forgiving yourself. Your body is what it is. You’re working with what you have.
A lot of people who are non-disabled are having their sense of time destroyed right now. But disabled people have never been able to plan for the future in the same sort of way. A lot of us are still upset about being kept inside all the time. But some of us have spent longer periods of time at home. This is not as devastating to us. It’s devastating in a different way, which is to say, it’s going to create more disabled people and it’s going to kill some of us too.
