I guess I’ll give the most dramatic example (yet; ew): I was coming out of my dorm room one time and there was this young man (whom I’d never seen before, btw) hanging something on a bulletin board nearby. We said hi to each other, but as I kept walking, I got the sense that he might have been still looking at me. I turned around, and sure enough, he was staring at me and he made no move to look away or down or whatever (he stayed in the same place — he didn’t follow me). I was kind of creeped out by that.

It goes to figure that as soon as I become comfortable with my personal mobility aid, and in turn, my impairment, the able-bodied world has to make their disapproval manifest in some way; that’s part of my opinion, I guess, about this whole staring thing that’s been happening to me.

When it had to be upgraded from a hard-handled collapseable cane to a soft-handled offset cane, I was again upset, this time because I couldn’t tell myself that I’d only use the cane sometimes and collapse it the rest of the time. It didn’t matter that I’d only collapsed the former cane a few times in the months that I’d had it, it still felt more…permanent.

And then my attractive offset cane was lost, and I ended up with a rather ugly one because it was all the shop had and I was travelling. I appreciated that my mother bought the replacement cane, but I hated it. I called it ‘Stinkbug’.

I ended up getting a new copy of my first offset cane some 6 months later, and was much happier because…well, I might have to use a cane, but at least this one was pretty!

And then I ended up needing both canes to get around. Ugh. Suddenly I lost my hands, and any ability to camoflauge my disability by hiding the cane against my leg. Sure, it stopped the random falls, but my poor self-image! For some reason, doubling the canes suddenly opened me to a world of people asking about and commenting on my disability in a way they never had before – a very unpleasant experience, especially for someone who was trying to wrap her head around being more disabled but still being just as valuable a person.

Then it was crutches. I actually loved my crutches from the moment I got them. I had my HANDS BACK!! I used c-crutches or forearm crutches, so I could drop the handle of the crutch to open a door for myself and it would hang on my arm. They were bright blue and cheerful, not that anyone ever seemed to really notice the color of my crutches. They were also a better support for my body, to the point where the security guard for my building at school noticed that I was walking better.

Finally, the dog. Now, I love my service dog far more than any other mobility aid I’ve ever had. He’s a better support and a dear fluffy goofy love. In some ways, he’s a struggle – he doesn’t like walking on anything metal, he’s afraid of things that move, and he’s curious as all hell, but he’s worth it because he’s company when I am at my sickest and most pained. I garner far more stares and comments than I did with my canes or my crutches, and heaven knows people unintentionally interfere with him a lot more. I have more confidence in how I appear, because I know I’m stepping out with a handsome gentleman, but I also find myself living with far more attention directed at my disability than I ever wanted.

Then there are the other aids – the MANY braces I’ve fallen into the habit of not wearing because of the staring and my tendancy to faint in the heat, the backpack on wheels because I cannot lift my school bag, so on.

…which I guess is a long-winded way of saying that mobility aids can be a huge journey. I am lucky in that I met someone when I was walking with one cane who thought I was the most beautiful woman he’d ever met, and 2 years (and many mobility aids) later, he still feels that way. It has helped me to look beyond my mobility aids, because he always does.

~Kali
http://www.brilliantmindbrokenbody.wordpress.com

I also have a length discrepancy (sorry if this term offends–I don’t know what else to call it) in my legs (1 1/4″). “Reclaiming” mobility aids can be an emotional process, I guess — I recently started wearing my leg brace again and I look at it much more positively than I used to. I’ll be honest, I used to hate my brace and I really resented having to wear it even though I had to b/c it helped me walk “better.” When I was a kid, I didn’t want to be, as I saw it, “different” (read: disabled); my brace was a symbol (for me) of being “different” and not able-bodied, which I couldn’t handle at the time. It was also a symbol of constraint and all the things I felt I couldn’t do.

However, now, like you with your cane, I feel like I’m regarding my brace with some fondness and I guess I’m wearing it because of that feeling. It’s not so important that I use it for physical reasons at this point in my life.

So, this explanation is a bit long-winded, but yes, I can really relate to a lot of what you said about your changing feelings on having a disability.

Dogged, I completely understand your twitch about “birth defect”. I did think twice about it before choosing to leave it in. It really does go to the far end of the reclamatory spectrum, to redefine “defective” as “okay, thanks” and it’s not a word choice I’d use in a less disability-aware setting. For me, it is the most accurate way to describe my condition, especially as viewed by my family and doctors, and not using it because of its connotations sends me into some tongue-twisters of explanation, because there are eight separate physical issues that need to be explained. It also seems more apt to me because I have one typical hand and foot, and one ‘defective’ hand and foot, so my feelings about them have sometimes been very complicated and antagonistic.

So I agree, it’s a problematic word. It’s just one that I need to use, partly because it is problematic, and it’s one that I need to watch my usage of. Thank you for pointing it out.

Being disabled meant, for the first time, having the ability to talk about my body and my frustrations with it without judging it as bad. It meant that I, with all my flaws visible and invisible, was still worthy. That I still possessed dignity. That I was still human, no matter whose standards I failed to meet.

Yes, this, oh my goodness, it is so true I want to cry, permission to quote in future?

This is a profoundly powerful post—thanks so much for writing it.