May 1, 2008

Through the Mountains and the Valleys

Who defines my identity? I've realized the answer is very simple: only I can. It took a while to get there, unfortunately.

The world would have you believe I'm a woman with unrealized potential, cut off from the world of success that everyone must aspire to by a tragic set of disabilities. The world would have it that my gifts are squandered on life as a home maker, and that if only my body were whole I would have "made something" of myself. For a while, I believed all of that, too. I bought into it, made it part of my identity.

The first challenge came when I realized I was not much of a woman. In fact, even before becoming comfortable with my own genderqueerness, I still never identified as a woman. I tried, but I could never feel like I was part of that world. I poked fun at both genders with wild abandon, feeling above that fray and certainly not included in the group being insulted in either case. I understood on an instinctive level testosterone wars, made friends in a way more traditionally male, and my wedding party had more guys than gals in it. (My friends largely refer to me as "a Tokah" and feel no need to define it past there, bless them.)

After that, my progressive disabilities began... progressing (go figure!) and the whole identity knot started to unravel. At the same time, I felt I was very much growing internally and that my life was becoming richer. This clashed with my former identity complex, the society imposed one, and since then its been a rocky but worthwhile trip to define myself.

A very common way to define oneself is through paid employment and education. While I am capable of short stints of it, my body hasn't cooperated for years in letting me keep a long term job or get anywhere in the academic system. I've gotten to try a lot of things, meet a lot of cool people, and get all sorts of different perspectives, but I haven't been able to keep up an out-of-the-house gig long enough to define myself by it since 2002.

For a few years, I tried the "chippy martyr" identity. The problem is, after a few years it gets stale: not just for your friends, but you as well. Its hard to get on with growing and enjoying your life when you focus on the pain, the suffering, the challenges of living with a disability all the time. (This is especially true when you have not yet admitted you have a disability!)

So, there I was, on the road to shrugging off society's definitions and finding my own. I had figured out and become comfortable with myself as a not-quite-woman, as a gamer, as a Christian, and I had finally given up on my martyr complex. This was a pretty rough time in my life, as I was slowly giving myself malnutruition by my inability to make it to my kitchen coupled with my inability to admit I needed help. I had been using crutches daily for some time, but at this point those were no longer enough. I grit my teeth, ordered a hospital-style wheelchair, and promised myself it was just for "long trips". At this point, I somehow still didn't believe I had a disability.

The day I accepted that I was disabled was the day I realized I hadn't showered in three weeks. I had been waiting for that good day where I'd feel good enough to make the step into the shower, and it hadn't come. That day, I came to understand that good day might never come again, and that I stunk. I admitted to myself, and to my family, that I in fact needed something far more stigmatized than a wheelchair in my mind: a shower chair. My pop got me one, and I had the first nice shower in a decade. That was the turnaround point, and the beginning of my assumption of disability into my identity.

To this day, it amazes me that it took so long. I have been hard of hearing all my life, and its impacted everything I do as I struggled to learn to interface with a world that speaks only in mumbles. I did identify with other people with hearing difficulties, took offense to "What did you say?" jokes, but never thought of myself as a PWD. Truly, I still mostly think of myself as the norm, and those hearing people as the weird ones. I understand intellectually that's not really true, but I can't get past that perception.

No, it was the day I ordered a shower chair that I realized I had a disability. Being a know it all and a self educator, I dove into the internet's trove of disability info. Years later, I haven't made my way out of that deep pool, but it has changed me to the core. I found that I was disabled, that it was ok... not only just ok, but something many people were proud of. I found out that I wasn't alone, that my particular disability story was all over the 'net and the globe, repeated in dozens of lives. I learned about the importance of independence and function over mimicking the AB world's way of doing things. I was infused with the knowledge I could do lots of things most people (including myself) though I coudn't, with thought, appropriate bits of equipment, and an open mind.

I found the freedom to be a crip, and with it came the freedom to be myself without embarassment. I don't have to conform to other people's views of what I should be trying to accomplish or how I should be trying to accomplish it. My friends and family have the freedom to expect help and contribution from me, as long as they're willing to work with me on enablement and open their minds a little bit. This freedom took me out of the prison of my bedroom, allowing me to care for my niece, help my buddies paint their house, go camping, and experience a wide world of activities I had once thought dead to me.

Subsuming "crip" into my identity also allowed me to see what I can contribute instead of what I can't. I will probably never be the bread earner for my family, but I put delicious meals on the table for them, write campaigns and adventures that entertain us cheaply every weekend, nourish their emotional lives, and serve as our social group's activities coordinator. I bring people together, help people through their hard times, and I can only do these things because I have perspective, empathy, and time.

When I was a teenager, I thought that at this age I would be in residency at a hospital as a doctor, a respected professional. If I were to go back and show that teenage me a bit of my current life, that teenage me would probably be incredibly disappointed in her future self. Identity is a journey, and there are no shortcuts to be had. The only way to get there is by living it.

To me, to indentify as disabled is more than just being part of a minority, more than just advocacy or even pride. (I don't dismiss advocacy, it is also incredibly important, from the smallest nudge in casual conversation to protests in the capital.) It is about a different perspective on life, a willingness to step up and learn a different way of living, traveling off of the beaten path, realize the grind, the "standard" life isn't for you and that there's nothing wrong with that.


Ruth said...

Yeah it's about being who we are - openly - as we are and honoring that perspective on life.

This is such a great post- thanks for putting it up.

Wheelchair Dancer said...

Yay Tokah!

This is so awesome.


perennial sam said...

Hi Tokah,

I came across your blog through the carnival and have been reading through it. I was wondering if it would be alright to quote you in a post I'm writing to my own blog (with a link back to your site). This is part of the entry I'm writing, the quote is something you posted a few months ago:

"During the Blog Carnival, I came across a post by Tokah describing how she is often not taken seriously with regard to her health issues and disability. This excerpt was particularly well written:

'Over the years, I have been accused of exaggerating my symptoms, malingering, making excuses, etc. As it turned out in the end, it was rather the obvious. I understated my symptoms, worked harder than was healthy, and made excuses for why I just had to destroy myself ... People don't expect a chronically ill person to look happy or content. Instead, we're supposed to be dour and depressing to be around.' "

Would this be alright with you?

Tokah said...

Anything I put up on a public blog like this is free for any not profitty use. =) Sure!

perennial sam said...

Cool, thank you! Keep writing, I love reading your posts. :)

talkin56 said...

Beautiful need a publisher if anyone does. Ever wrote a book ? I am a 30+ yr occupational therapist and could not have and never have heard your sentiments said better. Your ability to write and think is a gift that must be shared.

Would love to see something where I could repost this on FaceBook..any ideas how ?

Tokah said...

I think copying and pasting should work well, rock on!