Imagine my fear, my pure and abject terror when, at the age of 6, my parents and I were told I was going to lose my ability to walk by the time I finished middle school. This was, of course, immediately followed up by the physician’s very matter-of-fact statement that I wouldn’t even survive past my 20th birthday.
I was diagnosed with a neuromuscular disorder caused by a genetic mutation known as Spinal Muscular Atrophy (SMA) Type 3. SMA (which affects approximately 1 in 10,000 births) involves the loss of nerve cells called motor neurons in the spinal cord and affects the central and peripheral nervous systems as well as voluntary muscle movements; SMA does not affect cognition, emotional development, learning or academic ability, or the senses.
Over the next two decades, I grappled with that diagnosis with every fibre of my being. I delved into combat sports — wrestling in particular due to its combination of technique and agile thinking. I picked up skateboarding, much to the chagrin of my mother, who was tired of me coming home with ripped jeans and grazed knees.
That didn’t stop the inexorable passage of time, however. In the fall of 2009, I needed back surgery fusing my T2-L5 spinal vertebrae and inserting two titanium rods for support after the doctors found that I had developed scoliosis (a lateral curvature of the spine). Post-surgery, I used a cane to get around until December 2017, when I finally allowed myself to reap the benefits of using a power wheelchair the majority of the time.
This left me with two things: 386lbs worth of electric horsepower and inarguably perfect posture. Of course, it came with its own set of challenges — some more obvious than others.
I’ve lost count of the number of times I’ve been approached by strangers wanting to tell me they think I’m brave or inspirational for simply getting up in the morning and remembering my own name. One incident in particular stands out: I was a retail worker at the mall and was approached by a passing lady who, getting all but teary-eyed at the sight of me, wanted to congratulate me and tell me what an inspiration I was to her for simply being there, as if I had achieved something significant. I wasn’t doing anything that was out of the ordinary at all. I wasn’t doing anything that could be considered an achievement if you took disability out of the equation. And that’s when it dawned on me: this person had only ever experienced disabled people as objects of inspiration. I deliberately use the term ‘disabled’ instead of ‘people with disabilities’ because I firmly hold the belief that we are more disabled by the society we live in via lack of access and low expectations than we are by our bodies and our diagnoses.
It wasn’t her fault: it’s true for many ‘enabled’ people (people enabled by society through access). Disabled people are not their teachers, or their physicians, or their hair stylists. We’re not real people. We are there to inspire.
Well, I’m afraid I’m not here to inspire you. I’m here to tell you that we’ve been lied to about disability. We’ve been sold the lie that disability is the culprit. That getting up in the morning, going to work, and participating in society makes us exceptional. That we are working against our bodies and minds to be fully present and participating members of society. The truth is, disability is not the issue, and it doesn’t make anyone exceptional. The challenge here is lack of access and a biassed perspective.
When people say, “you’re an inspiration,” they mean it as a compliment. Now I know why. It’s because of the lie. That lie that makes disability the exception. It is the greatest injustice, and it’s part of the oft-repeated but ultimately egregious quote, “The only disability in life is a bad attitude.” Projecting positive vibes at a television screen isn’t going to make closed captions appear. No matter how much you smile at a bookshelf, it isn’t going to turn all those books into braille. And no amount of radiating a positive attitude at a flight of stairs has ever made it turn into a ramp. It just isn’t going to happen.
Life as a disabled person is actually difficult. We do overcome some things, but it’s not the things most people would expect. They’re not things to do with our bodies. I’ve been in my body for 30 years now. I’m quite fond of it. It does what I need it to do, and I’ve learned to use it to the best of its capacity, just as you have with yours. The biggest thing we must overcome is what former U.S. Secretary of the Navy, Ray Mabus, once called the “tyranny of low expectations”. It’s a form of bias that former U.S. President, George W. Bush confronted in a speech before the NAACP in 2000, referring to it as “the soft bigotry of low expectations.” This refers to the practice of expecting less from members of a group, i.e. disabled people, and thus implicitly encouraging those people not to reach their full potential. Low expectations are one of the most subtle, yet devastatingly effective, forms of sabotage we can do to others and ourselves. Low expectations often masquerade as kindness, but they are the cruellest cuts because they can deny an individual or a group its opportunity for greatness.
I believe that my diagnosis was one of the best gifts I’ve ever received. I get to experience the world in a unique way. I believe that these unique experiences which I and other disabled people have is what’s going to help us make and design a better world for everyone — both for disabled and enabled people. Many disabled people are forced to use lateral thinking to reframe, to refine, to experiment, and, probably most importantly, to ask the unasked questions. Whether it’s picking up things from the ground with barbecue tongs, or charging a phone using a wheelchair battery, I learn all the time from disabled people whose solutions have been informed by their unique experience of the world. I’ve had to work within limitations and constraints nearly all my life; which is why I’ve also gotten very, very good at failing. Whether it be stand-up comedy or baseball, any exercise in failure attracts me as a place where my ability to constantly adapt makes me a proficient ideator and problem solver.
What if we all changed our mindset? What if we started designing for disability first — not for the ideal user first? I’d like to invite you to test out a very powerful tool that may just have the potential to solve some of the world’s greatest problems: design thinking. A process for innovation and problem solving, it can be broken down into five steps: First, defining the problem and understanding its constraints. Second, observing people in real-life situations and empathising with them. Third, coming up with hundreds upon hundreds of ideas — the more the better, the wilder the better. Fourth, prototyping by gathering what you can to mimic the solution, test it, and refine it. And finally, implementing by ensuring the solution you found is sustainable.
So, where can we use design thinking? The answer is simple: start by talking to disabled individuals where you are. Does your Jamatkhana, place of work, or local community centre have accessible entrances? Are tables at wheelchair height? Are door handles easily able to be gripped? Are there ample handicap parking spots?
When we design for disability first, we often stumble upon solutions that are not only accessible, but also are often better than when we design for the ideal user. Did you know that text messaging was originally invented for deaf people? However, it seems to be pretty universally liked now! This means that the energy it takes to accommodate disabled people via accessibility can be leveraged and moulded as a force for creativity and innovation. This moves us away from the mindset of trying to change hearts and minds, away from the deficiency mindset of tolerance or inspirational objectification, and on to the mindset of becoming an alchemist — the type of magician that this world so desperately needs to solve some of its greatest problems.
I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a boy working at the mall isn’t referred to as achieving anything because he’s doing it sitting down. I want to live in a world where we don’t have such low expectations for disabled people. A world where we aren’t congratulated for getting out of bed and remembering our own names in the morning. A world where we value genuine achievement for disabled people. A world where we design for disability first. A world where disabled people have the accessibility to do what they need to do in a similar amount of time and effort as an enabled person. A world where everyone is independent and empowered. Disability doesn’t make you exceptional, but questioning what you know about it does.
