Working Against Ableism
Society teaches us from a very young age that the disabled are not valuable, beyond that we are burdens. This is so deeply ingrained in us that we don’t even realize we have inherent bias. My journey from able bodied to severely disabled has been eye opening in many ways I never anticipated.
I have a degenerative neuromuscular disease. 10 years ago I knew that my physical ability would degenerate and I would eventually become severely disabled. I took my love of problem solving and found myself a career that would work with any level of physical ability. Software engineering is so perfect for my situation that I thought I would surely meet a lot more people with mobility impairments in this field. So far I’ve met one, and I had to fly across the country to do so. I took a look at my own experiences to try to understand why I haven’t found many more.
When I started on my path to software engineering, my disability was largely invisible. The hardest thing about it at that point was being a female in a predominately male world and starting to realize that I was given very different opportunities than my male peers. I was not thrilled with that situation, so I started speaking out. I spoke at conferences and meet ups and participated heavily in my local software community. I wanted so much to be able to do something to change this inequality.
As time passed, I transitioned from walking with braces to crutches, to a manual wheelchair, and eventually a power wheelchair. Initially I was so inwardly focused on trying to deal with these changes in my body that I didn’t really notice how much had changed on the outside. I thought that perhaps my unhappiness with my physical state was tempering my perception of what other people thought. It is exhausting to fight your own body every day to accomplish the same things that people take for granted.
At first I noticed the absence of things. People I meet never ask me what I do anymore, there is an assumption that I don’t have a career. My own doctors even make this assumption! Juggling the medical interventions that keep me well enough to have a career while having a career is complicated at best. I need a lot more flexibility in schedule than most people do. I am lucky that my job affords me all the flexibility that I need, but I know that this is an area that prevents many people with complex medical needs from being able to find full time positions. I am able to accomplish the same amount of work that all my coworkers do, I just sometimes start work earlier or work later to offset time spent at doctors.
Once I started using my chair, it felt a bit like I was living in two worlds. There is the normal world where I do my job, care about the typical work things, make grocery lists, nag the kids to do their chores, just normal mundane stuff; then I leave the house and I have to deal with the reality that society creates for me. For example, one day I was working on a very complicated data migration and after work I took my wife, teenager, and her friends to the county fair. I was sitting in my wheelchair thinking through this data migration while waiting for my wife to finish talking to someone at a booth when a man came up to me with a plastic wrapped measuring spoon. He said in a fake excited voice, “I have a spoon for you! Would you like a spoon?” like I was a puppy or a toddler. It was so awkward and dehumanizing that I was unsure how to respond. I took the spoon, it just seemed easier that way.
People say things that they don’t realize can be hurtful or insensitive. I have heard things like “so handicapable!” when I ran into a door, or “be mindful, Dave brought his dog and I don’t want you to run over it.” when I have yet to run over an animal. Even things like our daily team meeting being called “stand-up” gets awkward. My teammate finally got so flustered telling me it was my turn to lead stand-up that he requested we change it to “scrum” instead.
People aren’t the only thing that leads to awkward work situations, sometimes the workplace itself can cause them. When I transitioned to my power chair I no longer fit the office furniture. Because of the internalized sense that disabled people are a burden, it took me 3 months before I finally asked for a desk that I could use. I felt so guilty and ashamed for not being able to use the standard office furniture and I didn’t want to reinforce the idea that disabled people are always asking for things.
Eventually I realized that things within my own community, the one that I had worked so hard to participate in, had changed. The bar to prove myself rose even higher once I was in a wheelchair, it got raised to Stephen Hawking level achievement. I can’t just be average, I have to master something before people will take me seriously. You would be very surprised by how many people have this bias and are completely unaware of it. They don’t do it to be cruel, it’s just so deeply programmed into our society that it happens without them even realizing it.
When I realized that inclusion was missing in my own backyard, I went to try to find it. I traveled across the country to conferences that touted their inclusion and diversity, but I found that people like me were missing from there. Even worse, many of them were lacking accessibility. One conference had a job fair and a third of the job fair was on the second floor of a historic building with no elevator. I frequently can’t be a main stage presenter because it is very common for stages to be inaccessible. I look at those stages and know that I won’t see anyone like me up there because they couldn’t even get there.
I am not saying these things to complain about life with a disability. It’s just that these are things that I was completely unaware of until it was me going through it. I want people to see that accessibility in the work place goes further than just a ramp into a building. At the end of the day, I just want to be like everyone else. I want to be able to be an average programmer that gets to have average programmer goals and comparable expectations. It’s exhausting trying to fight my own body, society’s inaccessibility, and try to have super human programming skills at the same time.
We have a lot of work to do to include people with all kinds of disabilities, both the visible and invisible ones, in the tech community. This space is the perfect place for so many people with disabilities and I feel like that makes it that much more important that we learn to adapt our spaces and attitudes to empower people. The way to get there is to start open and honest dialogue. Ask people how you can help them be included and where you are falling short and listen to their answers. The disabled community has been marginalized for so long that it will take effort on everyone’s part to make space in our community for everyone.
Courey is a software engineer that enjoys working with data and distributed systems. Outside of work, she likes contributing to her local programming community, speaking about diversity and inclusion, giving talks about software at Meetups and conferences, and helping make our tech community more accessible for everyone.
