There were a lot of things I didn’t know about disability when that swift but severe fall left me paralyzed from the bellybutton down. In fact, I was blissfully unaware of almost everything. But as surprising as it was to learn about wheelchair life as it unfolded in front of me, there was one thing that really shocked me about this new club I suddenly belonged to — and it had nothing to do with my body. It was all about the unwritten rulebook.
That’s right. There is an unwritten rulebook of disability. Its main purpose? To make sure that anyone who isn’t a member of the club, doesn’t find out that being disabled is hard. I’m serious. We aren’t supposed to admit it. Because if we do, gasp, show the struggle, we will perpetrate outdated assumptions and erase years of progress towards equality.
So instead of giving a balanced view of our different conditions and how they fit into our lives (and they do fit into our lives), we — in our unspoken pledge to Alpha Gamma Disability — vow to hide the things that make disability difficult so as to change the way this community is seen in the world. We go about our lives as though we are living a real-life version of US Magazine’s Stars (or rather) People With Disabilities—They’re Just Like Us. I must shine with independence and exude ability everywhere I go. See you and I, we can both have 99 problems, just as long as disability isn’t one of them.
Except here’s the thing: My disability is, in fact, a problem. I’ve done life both ways — I’ve been a woman, wife and mother, both ways. And this way — this disabled wheelchair life way — is harder. It just is. Not only because of a lack of ramps, out-of-service elevators and misinformed ideas (as the club would have you believe), but because my body was broken and cannot be restored to its factory settings. I can’t stand, walk, pee or even feel anything below my button (just to name a few little hiccups) and my body is in pain all the time. Those things make life more difficult. Not impossible. Not terrible. But more difficult. Ignoring those realities as we bring attention to our stories isn’t doing us any favours — mostly because, nobody buys it.
Honestly, we are kidding ourselves if we think any amount of I’m just like you rhetoric convinces anyone that disability doesn’t add at least some amount of complication to our lives. The disabled community wants to shape the narrative, but how can we do that without being completely transparent about something so blatantly obvious? Society assumes that disability is difficult but the truth of how it is difficult remains a mystery because we don’t let them in. So they wonder and they guess and they assume. Let’s stop pretending and acknowledge the struggles while also bringing light to all the other pieces that make us whole humans.
I want to share the realties of my disability — the good and the bad — in the same way I do my journey through motherhood, mental health and marriage: without worrying that I’m damaging my own or (worse) an entire community’s validity as a parent, employee or partner.
Disability, like all my other pieces, is a multi-faceted part of me. Getting vulnerable about all of it, is how we can start to control the narrative in a way that’s believable and honest. We may want to be seen, understood and valued but it won’t truly happen until there is understanding. And nobody can begin to understand something they’ve never personally experienced unless the ones who have experienced it, share their stories. By only divulging the goods half of the story, we aren’t giving either side solid ground to stand on.
Which is why I think it’s time to burn the rulebook and share the ways disability likes to mess with us. And all the ways it doesn’t. Not for sympathy, but for knowledge, and the growth that comes from truly understanding someone else’s situation. I won’t hide the challenges in order prove that I’m not an obsolete member of the human race. So here I am, letting the cat out of the bag and telling you that disability is hard. It’s not like the club can revoke my membership.
I read your blogs all the time. I’m not disabled but your words hit my heart. I hear you and I’m with you all the way.
If only we could be evicted from the disability club for telling the truth! I’d be right there! Love this piece.
Interesting timing on this piece, for sure. When I read it I thought to myself that I have definitely done that my whole life. Since I never had an able bodied time (shy of my first 6 weeks) I didn’t at first know it was hard. Then when I did realize it I still wanted to fit in, go places, do what everybody else did so I downplayed the whole deal. Never really shared what the hard parts were. Yesterday I was being evaluated for a new wheelchair (28 yrs is a pretty good lifespan for this last one!) and I had to meet with the provider and a physical therapist. I haven’t had much contact with PTs because I really never was taught how to do things – I just had to figure them out as I went along. As she was asking me questions about what I have difficulty with, what is hard to do, what my abilities & limitations were I found I was downplaying a lot. My husband tapped me and spoke up about a few things. Usually this is very annoying to me but I actually thought about this article. I realized what I was doing and that I’ve always done it more or less. She said it’s incredibly common for downplaying to happen and suggested I just spell it all out. I was doing myself no favors at all. Not only will I be getting a new chair so this old one can be emergency back up but also power assist wheels. You are a wise lady! As always, I appreciate your perspective on things.