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Consistent Presentation
Written by Chloe on Monday, August 23, 2010
My disability presentation has evolved over the last two years. It has lacked consistency, both over time and also between different groups of people. I’m not sure I could have done it any other way. I needed to experiment in order to find an optimal presentation for treating my BIID. These things simply weren’t obvious to me ahead of time. However, it leaves me with the discomforting baggage of being known in different ways to different people.
The primary discrepancy is with my right leg; and the origin of that lies within my BIID itself. My body map tells me two things: firstly that both legs are completely paralysed, and secondly that my impairment is asymmetric. I’ve tried to think my way out of this paradox without success. It is simply not amenable to logic. I just have to accept both things simultaneously. Do others of you have analogous issues?
The presentation solution that I eventually came to is the combination of a wheelchair and a left KAFO. The single KAFO satisfies the asymmetry requirement, and the wheelchair allows both legs to be non-functional. However, it took a while to get there.
Two years ago I started with two KAFOs and two crutches. That takes care of the bilateral paralysis, but not the asymmetry. The same is true of a wheelchair alone, as well as a wheelchair plus two KAFOs. Theoretically it may turn out to be optimal to use a wheelchair with left KAFO and right AFO. However there are a number of things, including ability reassignment surgery, that are of higher priority to me. A right AFO is not on my immediate shopping list, despite the idea being extremely appealing.
The problem is that I have been doing different things with different people. It is not an issue for people who know about my BIID. They will simply accept whatever I do. The wheelchair is not an issue because everyone knows me as a wheelchair user. Outside of my home I never use a wheelchair without a KAFO, so the question is: One KAFO or two?
As I thought about the conundrum, I realised that there is actually only one person I see on a regular basis who does not know about my BIID and who also has never seen me with just the left KAFO. That is my boyfriend of the last eighteen months.
The time had come. He called by phone to invite Alicia and myself out to dinner. As usual, I in turn invited him to spend the night. I answered the door from my wheelchair, as always, and the three of us hung out for a while before heading to the restaurant. I had decided ahead of time that I wasn’t going to bring the wheelchair. This was the first time I had tried the combination of the left leg brace with two crutches; usually I use one crutch with one leg brace, or two with two. Although I had practiced very briefly, my progress was slower than it is with two leg braces. I had to pay attention to a crutching rhythm I wasn’t used to. My boyfriend must have noticed my slowness in getting from the front door to his car, because he turned around to check out what I was up to. That was when he noticed, for the first time, the absence of my right leg brace.
"Yes", I said, "my physician had suggested I might be able to counteract the atrophy by exercising regularly" (true statement). This alone seemed to be a completely satisfactory explanation. My boyfriend already knew that the left leg is more affected than the right by the SCI.
The topic only came up one more time, during foreplay the next morning. He asked if I was having greater feeling in the right leg, along with the increase in muscle capability. "I’ve always had more feeling in the right leg", I said truthfully, neatly sidestepping the question like an expert politician. This was also a satisfactory answer. Somehow I always seem able to answer people’s questions without telling any actual lies.
So, it is done; consistency achieved. My boyfriend will tell his circle of friends that I just use one leg brace at this point. The only time I’ll be using two leg braces is when I’m around friends who know about the BIID. As usual, this change in disability presentation was a piece of cake. I’m not sure why I overthink stuff like this. All of my experience leads me to believe that it is never a problem.
Tags: AFO, Atrophy, BIID, Crutches, Impairment, KAFO, Leg Brace, Paralysis, Presentation, SCI, Wheelchair
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6 Comments
Hi Gravity. Yes, I’m polyamorous. Alicia sleeps on the couch when my boyfriend stays over. She made us breafast in the morning too, as usual. It’s all extremely amicable. Nothing is ever done in secret.
That’s pretty awesome- I imagine you’d do the same if Alicia had another partner as well? (or is she monogamous?)
And I agree with Gravity- if a person’s disability changes what they need to do (and it can even from day to day), how they present will change.
No, I would not do the same for Alicia. I don’t have the heart to inflict a breakfast I’d cooked on anybody else. :o)
Thanks for the reassurance, guys.
Well, it happened; that dreaded moment when somebody who knows you only as a wheelchair user sees you walking with no assistive device. “Last time I saw you, you were in a wheelchair”, she said. “Oh. Yes. I’ll explain.” I said. I came out with a brief explanation of my BIID. It didn’t seem to be a problem, though she said she’d need a while to process it. My comfort with coming out of the closet continues to increase.
This evening I went out to dinner at a restaurant with a friend. It happened that a coworker and her companion came to sit at the next table. It seemed like a good example of my consistent presentation with left KAFO and wheelchair providing me with a worry free environment.
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1 On 23 August, 2010, Gravity said:
You’re doing exactly what someone with a “real” disability does.
It’s just the existence of BIID that makes you question and re-question what you are doing. Most people aren’t thinking in those terms.
…On an unrelated note, and something you can ignore or tell me not to mention again, I’m interested in how your personal relationships work, being what I suppose many would call “polyamorous”?