Invisibility Disability by Emily

Here at AXIS, we often get questions about disability. Often these questions revolve around 'invisible disabilities' that are more difficult to categorize or understand. Dancer Emily has generously written about her experience and shared some of her thoughts below. - Judith Smith  

AXIS Dancers fly in the airAbility, much like autism and rainbows is a spectrum.

Being disabled has never been part of my self definition. It’s not ‘part of who I am,’ but instead just something I deal with. Think about it this way. Are you disabled if you can’t sit up? Or stand? What about walk? What if you can’t run? Can’t run a marathon? Can’t win a marathon? It’s all grey area.

But then who is disabled? If we can’t categorize strictly by ability there has to be something right? There has to be something that makes some people disabled and others able-bodied. Well, we could delineate who’s disabled by a visual trigger: assistive equipment. There are always prosthetic legs, wheelchairs, crutches, seeing eye dogs, et cetera, to be the emblems for disability. This is a great solution, you might be thinking. Anyone with equipment is disabled, anyone without it is not. Easy, right?

Actually no, and this is where things get tricky. Equipment and the disabilities most strongly associated with them give us, a species in love with categorization, an all-too-easy means of differentiation. Take wheelchairs as a concept. Wheelchairs have become the emblem of all disabled people. They are on everything from parking spaces to disability-pride t-shirts. And yes, many disabled people use them, and they are great, but the cultural association between wheelchairs and paralysis is so strong that many people who use wheelchairs for non-paralysis or other obvious reasons are often labeled as lazy or fakers. Instead of seeing each individual as different from all other wheelchair users, the chair comes to define what the user should and should not be able to do.

Equipment itself can even go unseen, leading to more confusion and blurred boundaries. Insulin pumps and catheters for example are both forms of invisible assistive equipment.

But these aren’t the only issues with our equipment-centric idea. We have to remember that arthritis and other muscle and joint problems, heart disease, stroke, cancer, mental health problems, diabetes and nervous system disorders are, according to the Council for Disability Awareness, the leading causes for disability today. Some people with these disabilities need equipment but others, often with the same condition, don’t. It’s individual to each body, so when we use visual markers to decide who is disabled it separates those with equipment from those without, often leaving those without, said to have invisible disabilities, separated from ‘properly’ disabled people.

Equipment, much like ability, autism and rainbows is a spectrum.

So equipment can be deceiving. I’m a great example. I use crutches but not, as most people assume, to take pressure off my lower limbs to allow for ease of movement. Instead my crutches prevent falls, and help remind my body where vertical is. I have the option of wearing braces on my legs, using a walker for stability, even using no crutches at all and simply falling a lot and hoping I don't injure myself (which is what I do when I’m at home). Maybe someday, not too far in the future, I will be wearing a gyroscopic belt that helps keep me upright, or a robot will follow me around to right me when I fall. My point is that the crutches solve a problem, but they aren't the only possible solution. Crutches may not even be the ‘best’ solution but they are the one I prefer. But the equipment I use leads people to make incorrect and often derogatory assumptions about my ability.

This trap of equipment-centric thinking about less visually disabled people comes from all sides. I have had many experiences in which other disabled people have scoffed at my accessibility needs or told me I am undeserving of or simply in no need of modified access for work or life activities. That I was simply taking resources away from people who actually needed them. But access doesn’t just come in the form of ramps or braille signage. Access can also mean a bathroom nearby and a work environment that allows for very frequent visits, or privacy for insulin injection, or in my case not just crutches, but things far harder to actually put into practice: no loud noises, no bright or flashing lights, keeping temperatures cool, a place to lie down, an elevator, diligent supervision from my significant other, and the most arduous barrier to overcome, freedom from other people’s concern.

Other people getting upset by seeing me flail or fall over or slur my speech is a real and permanent barrier in my life, often leading to my outright exclusion because it’s too disruptive or upsetting for others to experience. I’ve spent years being sent out of classrooms, told to stay home from work, and even let go, all because my disability upsets people. There’s no aisle width legislation or power door button to help modify this obstacle. When the needed access doesn't come in the bite-sized forms of curb cuts or personal care, it is often shrugged off as not really mandatory or too difficult to provide.

The real problem here is that humans love to categorize things: races, music genres, species, sexualities, everything, but these subdivisions just don’t hold up under closer examination. Imposing ideas about who a person is, what they should be like or be able to do based on what they look like is the essence of discrimination. Invisible disabilities then sit at the heart of our societal struggle with discrimination because they challenge our snap judgements, our ideas about disability, and ask of us to greet each person as they are.

Contributed by Emily Eifler, AXIS Dancer