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| Image Description: A photograph of a disabled child on wheels in an R2 D2 Costume |
Organizing this was hard for me because I had to ask a huge favour. As I can't go in my power chair and my scooter won't make any other theatre in the downtown core, I need to go by car and take my manual chair. The theatre that's easiest for me, the parking is directly below, accessible parking is by the elevator, short ride up, then a short roll on the side walk and into the theatre. This is where we used to go when we lived out of the city. Now this is best for me, but furthest for everyone else.
I said to Joe that I thought that it wasn't fair for me to ask everyone to go further than they would normally have to, to a theatre a bit out of the way transit wise. I said that I thought maybe we should just turn down the opportunity to go with everyone and wait until we get my chair and he and I could go together.
Joe was good with that.
But he asked me a question.
Is it fair to everyone going to decide what inconveniences them and what doesn't? Maybe they don't think that theatre is out of the way. People can just say 'no' if they don't want to go there. Why assume that this is even a problem for anyone?
I thought about that. From my discussions with others with disabilities, I get a sense that at least some of us have both a fear of asking friends for adaptations because how many can you ask for before the friendship becomes burdensome, and a fatigue of constantly having to ask for help of any kind from anyone. Those two things can lead, for me some times, to an unhealthy way of thinking of myself and my disability.
So, I pulled it all together and said that I'd like to go but with my chair being down, I'd need to go to a particular theatre.
Every single person said, "Yeah, sure, no problem."
But, and this is important, that's what their words said, but their tone also said, "Yeah, sure, no problem."
I'd worked this up into an issue in my head.
And it wasn't.
The thing is, I can't learn from this. I can't simply say, well I worry about this too much or the worries are real or these requests aren't ever a problem.
Because next time.
It might be.
I think that this is a personality trait, too. I often make things more difficult for myself in order to make things, I assume, easier for others. That said, I think the added layer of having a disability makes you more sensitive to nuances and the inevitable drawing of attention TO your disability. Does that make sense?
ReplyDeleteIf I can offer any advice, it would be to consider Joe's wise words each time such a situation arises - you know those around you best and will likely be able to suss out what their responses may be. (That said, it's very hard (for me) to let others manage themselves when my first instinct is always to manage as MUCH of a moment/situation/conversation as I can. I'm working on it.)
Have fun at the show - I've heard it's wonderful!
I am a huge fan of yours even though we've never met. I'm guessing that those lucky enough to know you and call you a friend, are happy to meet you anyway. Maybe it's time to just accept and embrace that thought. Enjoy the movie!
ReplyDeleteWise man he is, your Joe.
ReplyDeleteI used to find it very hard to ask for favours but wanted to be asked. In the past one or two years (and I am older than you two) I have decided people can ask me for favours anytime if they are also willing to hear the word no and I will ask for favours knowing I will sometimes hear the word no. Nothing about disability - strictly about doing for others.
ReplyDeleteSo glad to hear about the reaction of your friends!
You are right though . . . about assuming that is. I guess it depends on whom you're asking and how often you ask. Love doesn't get inconvenienced easily though. Consideration goes a long way - and I think most folks in your day-to-day life likely consider you considerate of them - and your thoughts on this situation prove it. Knowing someone is considerate goes a long way.
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I have a very dear friend whose daughter has a pretty significant disability. We don't get to see each other very often and when we do, arrangements are generally made around her schedule, so sometimes our meetings are super late or extremely early or in an odd spot. I treasure this friend and look forward to our get-togethers, no matter where or when.
ReplyDeleteI've been reading your blog for quite some time now, and I think your friends and family probably feel much the same way about you. Some relationships are worth whatever it takes.
Yes, I know what you mean. And I appreciate the kind, reasonable comments. I remember being left out of gatherings many times, often because I thought it was just natural to not be a problem for the event/group. Acceptance and being included sure are fun with real friends. Thanks, Dave.
ReplyDeleteIt's so easy to get into that headspace, that you are being an inconvienence by needing something done a certain way because of your disability. Back in 2013 a year after I became a wheelchair user I really wanted to go to the Proms at the Royal Albert Hall in London, I'd never been as an able bodied person. A friend of mine went to several concerts every season and he was always so excited about them, I suppose I wanted to see what inspired that passion. I asked him if he would like to go with me, but could he book the tickets because I didn't know how to do that. He said he was happy to do that and so we picked a concert and set it up.
ReplyDeleteBefore the concert we met for a meal and he told me that booking the tickets had been a bit complicated, you had to do it by phone rather than online plus he's had to explain my disability and he hadn't been sure what to say. I immediately felt awful about it and I kept apologising the whole way to the concert hall. Then we got shown to our seats and my friend turned to me with a big smile on his face, he said that no wonder they made it difficult to get these tickets because they were the best seats he'd ever had and the cheapest price he'd ever paid. He told me I had to come with him to at least one concert every year!
My two best friends always tell me that even if seeing me can be a little bit complicated they don't mind because not seeing me is much more inconvenient to them. I try to keep that in my mind when I'm worrying about my disability making other people's lives harder, that the people that love me know how hard it is for me to do a lot of things, and that them adapting to me is so much easier than me going the adapting.
I often have conversations in my head about not projecting onto others what I imagine their feelings are--the only way I can know is to ask--I know this logically--but the practice takes work! :) As someone privileged to spend the occasional (too short and too infrequent) visit with you, my friend, I can only say that I would leap high walls to do so and consider it a small price to get to see you.
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