Monday, September 03, 2018

Bursting Aloneness

Instant validation. Sudden connection. Aloneness disappears. So much can happen, in an instant, when disabled people and their allies share stories. When we got off the plane, I handed Joe the cushion, which we'd carried on board and he put it in place. Beside him was a woman who was industriously and efficiently reassembling the wheelchair her son used. He stood, cautiously and carefully, braced against a wall. Once she was done, she helped him get into his chair and started off. We followed.

When we got to the elevator there was room for two wheelchair users and two standuppers. Her husband and youngest son said they'd meet her at the top and then they dashed off towards the stairs. When we were riding up, in an elevator's version of a stroll, I asked them what was the worst thing that had happened to them while traveling with and in a wheelchair.

"Having the chair stolen at the gate," was the response.

"Us too!!!"

This has happened to us twice, once in Buffalo and once in Vancouver. We find that people either don't believe it or explain it away - they probably thought that it was an airport chair. Explaining away the experience, that my chair was stolen, has silenced me from talking about it. Even though, in the first case, the people who took it were caught with it, I had alerted security immediately, putting it in their car trunk. Even though, in the second case, the person was caught at the top of the ramp claimed ownership of the chair and attempted to wrestle it back from the gate attendant, I'm told that they really didn't mean to, it was an accident.

But here, someone who's had the same experience. It was explained to us that they disassemble the chair and wrap it with tape to send it down below, in order to ensure that the will arrive to their chair. I felt like I could talk about our experiences and still breathe, knowing that I won't have it tut tutted, or be accused of being so negative, or have someone explain that it was just a mistake. 

This is why, or one of the reasons why, I need the disability community, why it's important to me to connect with my own community, I need not to be alone and I need to be able to freely share my stories knowing that they will be heard and understood. 

I do not wish to offend non-disabled readers, I appreciate you being here, reading these words, I really do, This blog wouldn't exist without you. All I'm saying is that sharing lived experience, either as a disabled person or an ally, really matters.

Really. Matters.


ABEhrhardt said...

Only someone whose wheelchair has been stolen could really understand all the nuances of having your chair stolen. There are way too many for the rest of us to comprehend, and similar experiences - losing something like a walker - just cannot be exactly the same.

I hope those who were stealing your chair were charged with theft. Or attempted theft. Or whatever they call it when they get interrupted. But somehow I wonder if they were.

Every time I get off a plane, I worry my walker won't be there. Not just undamaged - it has been battered but is of a sturdy design. But actually there. Because I can't move without it. Not for more than a few slow steps. I can't imagine what it would be like for you not to have your chair. But that young man and his mom can.

Andrea Shettle, MSW said...

Sometimes we need to be simply understood without having to explain things that seem obvious for those of us with shared experiences but aren't so obvious for people who just don't have that frame of reference.

It's not that having to explain is itself inherently bad. Explaining can improve the understanding of others so that some day we can say certain things to them without having to explain any more. Explaining things may also sometimes be a necessary step in obtaining things that are crucial for us to have. Sometimes (for people who gain enjoyment from the process of teaching) it can even be rewarding. But ... it's still a form of labor. And if you're someone whose frame of reference is very different from most other people's frame of reference, then you can find yourself doing a heck of a lot of explaining just to get through an ordinary day. That can eventually get tiring. And some of the people you need to educate don't want to have to learn anything outside their comfortable frame of reference. Which means that sometimes your efforts go to waste. Which can sometimes mean that you can't access things that are crucial to have (if the person you were trying to educate was the main gatekeeper for accessing your needs).

All people tend to want/need an occasional break from things that can make us tired. Having that break lets us refuel so that, the next time we have to explain a thing yet again, we might have the energy to deal with it again.