Why a Disabled Engineer Might Be Your Next Great Hire
It is a cold day in Virginia, and as with all cold days, this presents extra challenges. My hands are unfeeling and unresponsive, as though I’m wearing thick gloves that force them into an odd fist. I manage to get dressed, though it takes a little longer: I layer clothing designed for subarctic temperatures under my suit pants to protect my ability to walk from the cold that would prevent it; use a hook designed as a back scratcher to hook my arm through the jacket; switch the hook to the door to pull the other side of the jacket over my shoulder with my arm in the sleeve. The single button on the jacket is more difficult, but by pushing from behind and using a binder clip to hold the other side of the jacket, I manage to pop it through.
I’ve purchased shoes for days like this — days when my body doesn’t work quite right — when I have to make up for its slowness with creativity. I sit, slide on heat retention compression socks, and then put my feet in the shoes from behind and pull the Velcro straps across the top and back. They look professional, like normal dress shoes, leather Mary Janes. They are another off-the-shelf solution for what is, undeniably, an engineering problem.
A small bag I put in my purse holds more objects of prevention: lidocaine and muscle relaxers in case the other measures aren’t enough, along with the antivirals that allow me to maintain the function I currently have.
My toothbrush has an extra thick handle, so holding it isn’t a problem. Before I purchased this one, I had coated the last toothbrush’s handle in thick electric tape for the same purpose. Use what you have.
It’s been 20 minutes and I’ve already solved five different problems before I even leave my bedroom.
I used to be afraid of what would fail with my body next. It started when I was 24 or 25, I don’t quite remember because of the medication they had put me on, but I’ve been through a lot of it: the loss of vision, spasms that resulted in flinging my cell phone to its doom against a concrete wall, muscles tearing themselves apart as I tried to walk out the tension. Other, grosser episodes. Each new thing felt like a failure, a doomed attempt to regain the normalcy and quality of life normal for other 20-somethings.
No one teaches you how to be sick, or how to adapt to a disability. At first, I felt powerless and afraid, but when I accepted this new reality I began failing forward instead of just failing. I refused medication that would lessen pain at the expense of awareness or brain function, and weaned off the drugs that severely impacted my ability to think. I learned how it would feel to live without skin. I learned what a 10 on the pain scale felt like, and was relieved. I learned I could survive the worst my body had to offer.
Every symptom, every experience was a new data point — more clues as to why this was happening. Every bit I could collect would get me closer to an answer, or to a treatment that might help. I told myself each new horror was a bread crumb to eventually lead me home. Throughout this entire experience, waxing and waning over the course of years, I worked full time. Flexibility in working from home or adjusting my schedule helped for truly bad days, but if anything continuing to work drove me forward. I learned what I am capable of enduring, and it’s a lot.
Doctors found abnormalities but nothing that provided a definitive answer, and they offered little more than symptom relief. I visited with many specialists over the years and had multiple rounds of expensive and often painful testing that produced more data, but still no answers. I realized I wasn’t taking control of my own health. Doctors are wonderful, wise, and very helpful, but no one will care about or know as much about your own illness as you will. They see hundreds, even thousands of patients. I knew if this was happening to another person I loved and not to myself, waiting for more appointments wouldn’t have been sufficient. I would be researching everything, treating it as a project, to try to help them as much as I could.
I realized I needed to take a more active role in solving my own mystery. I was not the only person in the world experiencing these symptoms, I knew that would be a statistical impossibility. Published research from the NIH and from clinical trials held freely available data, and patterns like mine had to be there somewhere. I tracked my symptoms and behaviors for months, compiled indexes of my test results and blood-work, monitored everything that went into my body and how my function and pain levels changed.
I did my own research, analysis, and risk assessment, and presented it to my primary care doctor. He agreed that my suggested treatment, modeled off of a clinical trial for treating people with similar symptoms, might work and was sufficiently low risk. He wrote me a prescription.
I regained my vision within a week, and the success of the treatment in many ways acted as its own diagnosis. I no longer walk with a cane all the time, but still need to use it fairly often. My big quad-cane, named “John McCain,” has been retired and replaced with something small and simple. More tests are in the future, but for now, the damage is done. I’ll never ride a bike again, or walk up a flight of stairs without help. I’ll never ski, but at least I can see. A life can be built from this. All that remains is to see how much of the nervous system and myelin damage my body can heal.
I started making art with AI using a deep learning neural network when I lost the ability to make it by hand. It was a much needed form of emotional expression. The images included in this article are all a result of my work with this AI-assisted art method, an exploration in machine learning and digital art.
The need for diversity in technology has become a primary discussion point lately.
People with disabilities are the largest minority group in the United States, but many employers with diversity initiatives pass over this group entirely — focusing exclusively on gender, age, and ethnicity. Recently, this has expanded to include educational diversity, but disability status is rarely included in discussions about diverse hiring. This is a costly mistake. As developers, we seek to represent our customers, but have trouble understanding the needs and motivations of groups not represented within our companies.
According to research recently completed by the NIH National Center for Biotechnology Information, disabled people:
- Are just as productive as non-disabled people
- Have less job turnover
- Have significantly higher attendance reliability — some employers might fear that disabled employees will take more sick days, but the data shows the opposite is true
- Have fewer workplace accidents
Jane Hatton of Evenbreak, an organization dedicated to meaningful employment for disabled people, explained this in an article appearing in the imeche.org newsletter:
“Disabled people tend to have developed skills to navigate around an inaccessible world, including resilience, creativity, determination, innovation, problem-solving, persistence, and so on.”
These sound like the soft skills often described in developer, analyst, and engineering roles. People looking for a job at your company have developed these skills. If we hadn’t, we likely would not be able to show up in the first place.
I will likely never face another problem as challenging and complex as managing my own health and the associated disabilities. Because I am living it, objectivity is difficult. Data tracking and analysis become the only way to get a clear picture of my own condition, and so I do it systematically. This started with a simple notebook, and evolved to an app on my phone, re-purposed from its intended purpose of addiction recovery to tracking what worked and what didn’t. Everything is iterative. I walk with a basic cane often, have a handicapped placard on my car, and would likely be eligible for SSDI (government disability payments) if I applied.
I am working because I am passionate about what I do, because it fulfills me, and for no other reason.When I show up, I’ve already fought and conquered to be there. It isn’t a paycheck for me, I have easier paths to that.
Everything I do has become a multi-problem exercise; getting dressed was just one example. To continue a normal, independent life, I’ve solved many problems, embraced failure, and have learn to overcome. By the time I show up at a job interview, I’ve probably already overcome several challenges just to be there.
Overcoming my own challenges in daily life doesn’t provide business value, but the trained mindset of constantly overcoming and creating new solutions definitely does.
- I am an early adopter by necessity.
- I try on new technologies and new solutions like many people try on new clothing.
- I will never show up to work hungover, because I do not enjoy drinking. (I spent over a year feeling drunk)…
- Biohacking has become a way of life.
- I will seldom take a sick day because I am extremely aware of my body’s condition and what it needs to keep moving forward.
- I can estimate and manage resources and ambiguity excellently.
- Prioritization comes naturally, as it is practiced every moment of my life managing unknown and limited physical resources.
- Every dashboard, every product I create will be done with accessibility as a major consideration.
I check “yes” on the disability disclosure form when applying for jobs because I have a disability I can no longer hide. It will become evident, and I realized I needed to find employment that would work with me from the start. I’m still in my late 20s, young enough that showing up with a cane is surprising, and I’d rather give people the chance to prepare and the benefit of the doubt. This will become even more important if my mobility becomes more impaired. It is always a personal choice to disclose or not when applying. In my case, it made sense.
Many others, our coworkers and bosses, our customers, even friends and family, have disabilities that they choose not to disclose. Color blindness is what, in data visualization at least, comes to mind first. 8 percent of men are colorblind. Do you know which members of the board you’re presenting to have a form of color blindness? Probably not.
I believe that by creating an inclusive and accessible workplace, and by making accessibility a main component of our work, we can provide a world where extraordinary measures are not necessary for most people with disabilities to feel at home and confident in their employment and lives. Strive to create tools that are designed to include as many people as possible, because that is good design. Step into the shoes of people with disabilities who may see your work, many of whom may be colleagues with invisible disabilities, and provide a product that meets them where they are.
