Speaking up for disabled rights isn’t something that came natural to me. Growing up with a disability, pre-ADA, few laws outside of my education were available to protect me from societal pitfalls. I feel very grateful to have come of age at a time when America was coming to terms with the idea that access to all parts of society is something everyone should have. Though it wasn’t until after I graduated high school that my alma mater decided to put a ramp at the front of the school. I grumbled, remembering all those times I climbed out of my chair and pulled it up the stairs to get onto campus, but was glad nobody else would have to do it again. Unfortunately, older buildings in society sometimes still lack proper access, but the word is out to the disability community: say something about it and make sure it gets done.
Accessibility needs aren’t the same for everyone who lives with a disability. A person who experiences visual impairments has a different appreciation for clarity and signage in public places, seeking out those yellowed bumps on curbs to signal the edges of danger zones, whereas someone who uses a wheelchair seeks out ramps and elevators and curb cuts.
But one of the most basic, and somewhat stunning questions I get asked, is to describe what it’s like to live with a disability. I was asked that last summer, and I have still never been able to come up with an answer that has a personal and universal message. Instead of an answer, however, I came upon a realization. I had never asked an able-bodied person what it’s like to be able-bodied. Thinking about it, I wondered what I would ask, or who I would ask. I wouldn’t change my life, including my disability, for anything in the world, but I began to wonder what irony it would be if I could ‘become’ able-bodied for a day.
I wondered what it would be like to wander into a bathroom and have three or four or 10 stalls available to me, instead of one large one which usually has someone changing their clothes or a baby’s diaper in it. I wondered what it would be like to be made to wait in long lines at amusement parks, instead of going straight to the front. To have available any parking spot in the lot, rather than fight for the few at the front usually being taken up by those ‘just running in for a minute.’
I began to look at my son, now 16, in a whole new light. What is it like to be constantly asked to get things high off a shelf for his mother, who happens to be short whether sitting in a wheelchair or standing. To have doorknobs not at eye level, but hip-level? To climb stairs and be at the front door to a building, instead of shuffled around the building, over the river and through some woods to a ramp installed as an afterthought? To hear stories of mothers losing their children because of their disability, knowing their parenting skills wouldn’t be questioned if they were able-bodied. I wondered, when I was car shopping, what it would be like to just get in any car and pick one by price or brand, rather than whether the wheelchair would fit, or the tens of thousands of dollars it would take to install the equipment to drive it. I wondered what I would need to know, or even what to ask, in this struggling economy of two-footer proportions. To not have college paid for. To be extinguished from the meager finances which support my living independently in society.
What is it like tripping over a shoelace? What is it like to go to a store and not use a spatula to pluck things from high shelves? Or to use a phone and know I could hear the person on the other side, not struggling with my hearing aid. What it must be like to learn to speak from family and peers, rather than spending hours in speech therapy only to find out that there are letters and sounds I wasn’t even aware of.
Often when I am trying to understand a specific concept, I try to peer at it from different perspectives and angles, especially those I don’t agree with or understand. Our society is a massive plate, a googolplex of perspectives, likes, dislikes, desires, viewpoints, opinions and stories. What is it like to be disabled? We, which includes me, are all just one cold, one virus, one car accident, heart attack, one experience away from understanding what that really means. Each person’s answer would still be different, and each person’s requirements to remain independent and maintain their lifestyle would be a unique story.
So what’s it like to be able-bodied? To have the advantages and disadvantages of a common, everyday two-footer? You tell me. It’s your story, too.