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One thing I’ve noticed over the years, particularly as it comes to interpersonal dynamics, is the idea that my life with a disability is so hard. I frequently encounter perceptions of strangers that I am unable to cook a meal, hold down a job, or raise a family, all because of my disability. Then there’s the confusion about what disability I actually DO live with every day. I, a blind woman, am perpetually told that I MUST need the elevator, rather than the flight of stairs to which I was asking directions. My friends who are deaf or hard of hearing have frequently told me of their experience of being spoken to in very. slow. and. measured. words – complete with sweeping arm and hand gestures – or having written conversations in what amounts to broken English because of the perception that they do not understand complete sentences. I’ve witnessed a friend in a wheelchair being spoken to like a small child, rather than the competent adult she is, simply because she is seated and therefore shorter than most adults.
Do you know what all this has in common? It’s someone else’s discomfort around disability… and not the challenge of disability itself. Most of us with disabilities have reached a place where the tools of disability are second-nature to us – how to navigate the world, prepare food for ourselves, take care of our bodies. We realize that many people haven’t gone through Disability 101 (a seemingly mandatory course in the school of Disability Acceptance that sometimes takes months, sometimes years to master), and we’re generally understanding of mistakes along the way. What doesn’t seem to make sense to us is the idea that a non-disabled person’s job is to make our life “easier” or “better.” Not only that, but the perception is that it’s up to the non-disabled person to decide what we require – a seat on the bus, a spot closer to the front of the lineup, an elevator instead of stairs – frequently putting us in situations where we have to firmly make our needs known because we were never asked in the first place. This then causes the “well-meaning” non-disabled person to call us ungrateful, rude, abrupt, or pushy for simply asserting our autonomy… because, after all, they “meant well.” We often are forced to have nerves of steel, to bottle up feelings of frustration and anger, not because our disability is so hard, but because it’s so exhausting being used as a “teachable moment“, or having to assert our desires and rights to work and play and access the same facilities that are so often taken for granted.

But you know what/ I’ve discovered? I can have nerves of steel, I can advocate perfectly for myself, I can say all the right things with a perfect tone… and I STILL am misunderstood. I hate that I have to write this, because admitting it means I need something from you. It actually IS your job to help make my life easier, and that of other disabled people in your sphere of influence. But you don’t get to pick and choose what would make our lives easier. In a beautifully eloquent post, my new friend Chris so eloquently wrote about the things that are easy – opening doors, giving us your place in line, offering your seat on the bus. In reference to the big things, the important things, the things that include us in society (work, education, opportunity) “… you’d gladly give me a seat on the bus, but how would you feel giving me a seat on the Board?”

What we want from you takes work on your part… and yet, it, too, is easy. It’s letting go of your perceptions and allowing us to be human beings, with the same hopes and dreams and desires and weaknesses that you have. Would you like to be the only person sitting in the living room during Christmas dinner preparations, twiddling your thumbs, offering to help and being told no, just sit there and look pretty? It happens to disabled family members all the time, and when we attempt to insert ourselves, it becomes an argument that ultimately makes everyone lose. Would you like to be told that you can’t get married to the love of your life? It happens to disabled couples all the time – either due to meddling family members or frustrating bureaucracy. Would you like to be told that your work experience is perfect but then get told that the company hired someone else, but that you’re so “inspirational” for showing up? I have lived this and witnessed this unprofessional attitude over and over again. How about stating a preference for certain activities and being told that it’s “so stereotypical” or too outlandish… for YOU, not for anyone else. Yep… lived that, too.

This is the big stuff, the stuff that makes life textured and complex. It’s frustrating that my own autonomy is so dependent on a non-disabled public listening and learning and letting go of their preconceptions. It’s frustrating that being treated with dignity and autonomy and respect, being provided with helpful information the first time we ask, being listened to when we politely self-advocate is the very rare exception to the rule. I’ve been offered more bus seats than I believe I’ve been thoughtfully considered for jobs for which I am qualified. I’ve been grabbed to direct me more often than I’ve been told that my husband and I are a cute couple just because we love each other, even as the ring on my finger is immediately obvious. I’ve been offered assistance and guidance for which I am extremely grateful, but I’ve also had it foisted on me. The little things do make our lives easier, and they do matter, and they matter a lot. But the big things – employment, education, love, autonomy, respect, consent – matter more, and those things truly do make our lives easier.

You’d gladly give me a seat on the bus, but how would you feel giving me a spot in your kitchen, an important position in your office, an evening babysitting your children, an opportunity where my skills and experience can stand on their own, a day at the altar… or a seat on the board?

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