As I sat down to write today's post, I thought of a comment made recently on a recent blog post that suggested that I spent a lot of time being offended. I was glad of that comment in a way because it reminded me to be cautious in how I write about my experiences as a disabled person. I actually don't spend much of my life offended but I'm aware it can seem like that. This blog captures moments of my life as a person with a disability that I'd like to comment on. Many of those moments, like the one I'm about to document, the oddity of life with a disability. I want to capture the social aspects that come with having a visible difference and a visible disability. I do this for two reasons. I do it for me, this blog is my disability diary, in that diary I write what I want to remember, I am also a service provider, what I learn from one interaction with a professional or one ride down the street, can teach me how better to understand the world of those I serve. I also do it for other people, either with disabilities or those who serve or parent those with disabilities. I can't tell you the number of times people say, 'that happens to me all the time too' or 'I have to think about how to prepare my child for this kind of thing.' That makes me happy.
My life is happy.
More clearly: my life is happy, albeit with moment of annoyance.
Now, for the oddity of yesterday.
We went to see Handel's Messiah at the Roy Thompson Hall on the afternoon of my birthday. While there are primarily older people in attendance there are some youngsters too. But as the crowd tends towards dotage there are a lot of people there with walkers and wheelchairs. The ushers let us in first so that we can comfortably find our seating without the push of impatience behind us. I got to my seat and, when the general public came in, a woman came to the seat beside me, she turned and saw me and saw Joe putting my coat away. "You don't have to worry, you have a nurse with you."
I wasn't worried and I didn't have a nurse with me because I don't need a nurse constantly at my side. Part of me was annoyed that the automatic assumption was that Joe was a 'nurse' and I was his 'patient'. I said, politely and conversationally, "Joe is my partner, not my nurse." She said, "No, I didn't mean him, I'm a nurse so you have no worries."
"But I don't need a nurse," I said, confused.
Now she's offended and sits down quickly, I'm sure I heard a harumph as her bum hit her seat cushion. She steadfastly ignored me for the rest of the evening. She made sure, a couple of times, that I noticed her ignoring me.
During intermission she headed upstairs, we stayed in the concert hall. Joe said, "You know she only mentioned she was a nurse because you are in a wheelchair, she wouldn't have said it to anyone else here."
"I know," I said, "it's like she wanted to give me something to write about in my blog."
Joe laughed and said, "That's what I thought too."
So, there it is. Another documented incident of how the wheelchair is a magnet for social inappropriate behaviour.
It must be the time of year Dave, but when I read this, the first thing that came to my mind was that you should have told her that you are a sexuality expert, so you could share your expertise should you experience any difficulties :) Every has their own specialities!
Merry Christmas to you and Joe.
From reading your blog, I personally don't get the impression that you spend a lot of time being offended. I feel like you do a really good job documenting ableism and putting in some of the more positive aspects of your life and the whole thing is really enjoyable to read! (I don't feel like you needed it, but just wanted to say that I disagree with the person who said you seem like you get offended all the time)
But that comment touches on something I've been thinking about recently. I was spending time with a cisman* friend who has ulcerative colitis and was diagnosed at 17. I have a mild physical disability (still wrestling a bit on if "disabled" is a label for me to use.) I realized through our conversation how differently my friend deals with his condition and is much more likely to laugh it off and doesn't spend a lot of time thinking about the stigma he may eventually face. Whereas I think and read about disability a lot and am quite aware of how I may be being treated differently based on whether or not people are reading me as disabled or how badly my college is at providing access (which usually doesn't affect me personally) or thinking through some of the emotional pain I experienced from doctors and how that makes me think about my body more in terms of what it can't do than what it can. And I think there are really different approaches to how people approach their conditions/disabilities--which is also evidenced in whether or not they use the word disability. In my experience, people who use the term disability either have a visible disability and other people will call them disabled whether they want that or not. Or are people who have developed political consciousness around disability use the term. And I don't know, when you're in the grey area (where I'd place both my friend and I) where there is some choice about whether you think about ableism and pain or not, I don't know if it is better to think about it a lot and what things may be like in the future or to just put it out of your mind and treat it like not that big of a deal.
*For anyone not familiar, "cisman" means someone who was told they were male from birth, socialized male, and feels like they are a man. It's treated as the opposite of transgender and is used so as not to be like "transpeople" and "normal people."
I think in situations like this what the person is actually trying to convey is that they're "not" the sort of person they actually end up coming across like. That might sound odd, because of how inappropriate the words they choose usually are, but in my experience the sentiment is usually "I'm a good guy, not a threat to you", and they get sniffy when we respond to their words rather than their intention.
I think theyre trying to use words to create the comfortable-with-disability atmosphere that someone properly comfortable would achieve by just sitting down and behaving "normally" with us. Because they've got a bit of awareness, but not enough to get how to be natural around us. And theyre different than the genuinely clueless or mean or superior feeling people that we also come across too often.
Lol! Wheelchairs really do attract strange behavior.... That one really did sound like she was trying for a blog cameo!
I was in the train the other day, headed to my family's for the holidays. An older lady walked past me, then felt the need to turn back and ask, "Have you been in that thing your whole life? Oh, that's too bad..." I assured her that it was just fine. Two minutes later somebody else stopped because "I just have to ask your name, because I have a friend named _____ with spina bifida." I told her my name, but not my diagnosis, which I'm pretty sure she expected me to volunteer. I found myself thinking, "If I were Dave, I'd have today's blog fodder..."
And you didn't even touch on the well-meaning (?) people who want to "heal" anyone they come across who uses a wheelchair. Sometimes with actual "laying on of hands" - without permission.
And people who save their spite (and their saliva) for people who use wheelchairs.
And strangers who expect to be told one's diagnosis - in public.
Oh the variations in human behaviour.
It is my opinion that a sense of humour is an absolute necessity for anyone with a visible disability.
The preface to this post explains exactly why I read and enjoy your blog so much, Dave. And I must say you share your happy and successful experiences as much as the problematic ones...pretty much the breadth of life with disability and otherness we share.
Oh...and a belated Happy Birthday!
Oh dear sounds like she was also nursing her offendedness...
Thank you for this, it helps me to understand a different but maybe related issue.
I heard myself say the other day, after sounding off about something that had upset me, 'as a feminist I am always angry'. I wondered what I meant. Now I see, I'm not always angry at all, and I feel all sorts of things as a woman, but as a feminist, I feel anger and there is always something to be angry about. I think in activism, it's as it should be that we feel and know and talk about the emotions, the realness, the feelings that tell how this stuff matters. I guess coming across as always angry/offended/upset/disgusted is what comes with the role of being an activist?
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