I have been disabled for my entire life. However, I have only come to IDENTIFY as disabled very recently. For those of you who have been following my writing or who know me on LinkedIn or even in real life, you may think that I am specifically talking about the fact that I have recently learned that I am autistic. However, even prior to this diagnosis, I have been well aware of my own visual impairment my entire life.
I was born with congenital cataracts. Similar to the cataracts that some people can develop in their later years, my cataracts cause a myriad of vision problems including extreme light sensitivity and an astigmatism that have had me wearing sunglasses since I was about 2 years old, and prescription glasses from the time I entered school. In order to read anything written on a chalkboard, a white board or projected in front of the class, I had to sit in the front row at all times, sometimes even scooting my desk even closer to the board, out of line with the other desks in the class. Generally, this info about my needs was known to the school (I’m quite certain my mother had a primary role in advocating for me every time we changed schools) so I would not have to approach my teacher and cause a disruption by “outing” myself as having needs that were above and beyond the rest of the children.
We never used the word “disability” or “disabled” in our home, at least not that I recall noticing (and I noticed and recall a lot). This was despite my sister being unable to hear in one ear and my brother having more severe visual impairments than I experienced. Technically, each one of us was physically disabled in ways that were not immediately obvious to others. We were expected to work around whatever ailed us and we were all taught to ask for, or take what we needed from situations, whether we had to explain our needs to others or not. The world was not going to preemptively offer us a conducive environment so we each had to learn how to make our way, given the tools we had to work with.
One of the memories about my less-than-average sight that still sticks out to me came when I was a junior in high school and I had to take the ASVAB test, the Armed Services Vocational Aptitude Battery, that was given to all kids at my school. Nevermind the fact that military service was not in my or my parents’ plans for me (I would NEVER have survived with the whole “respect for authority” bit), I scored so high on the test that I managed to generate what could only be described as a metric shit-ton of recruitment flyers in the mail that lasted for years after. I’m sure I could have saved some trees and money on the part of the government had I submitted my eyeglasses prescription in response, but alas I did not.
So, why am I writing about this now? Because I realize now through reading others’ accounts of their various disabilities and thinking about what disability activists have to say, that I have a lot of internalized shame about this. I have been trying to work around and over-achieve and be “perfect” in other areas of my life in order to avoid being seen as disabled, as though disabled = less than. Too many people have this view of disability; they fear it. They fear they might become disabled, or that their children might be disabled, that they won’t be perfect. These fears are threaded throughout society at the very basic level, and are exploited by our lack of basic holistic health care for all. People fear disability because they fear other people’s thoughts about them, about how they fit in or what they might no longer be capable of.
I am writing this post now to speak out against that fear in myself and others. Disability is not a bad word. Being disabled doesn’t make you less worthy of care or humane treatment. And no, we are not to the point in society where this is commonly accepted or understood, but we must make progress. The fact that disabled people do exist and persist gives each one of us a valuable perspective on how to perservere and creatively work around obstacles. For those who have never been disabled or incapacitated, who have always had a clear path to smoothly sail through life, you are disabled in a different way; you lack the perspective to see how valuable we are to society! Disability inclusion is going to be vital to creating the new vision for humanity in the 21st century and beyond. There simply won’t be another alternative.