May 9, 2007

Reflections on a Weekend

I'd like to state at the beginning, I'm not sure where this post is going. I feel a need to write it though, so I guess I'll find out. You're welcome to come along for the ride with me.

I had a pretty eventful weekend. I'm now married legally, though we haven't had our huge family affair yet. We had a party afterwards that was fun, but completely overstimulating for both of us. I fear that on our actual wedding night we're going to sleep through the good part!

Yesterday, my sister and I went on a tour of various government offices to get our new-last-name paperwork done. The trip was an absolute adventure in disablism, but I'm sure I don't have to tell anyone who reads this blog that! Government buildings are built very accessible, but the government employees are experts at making them less so. By the time I left the SSA building, I was frustrated enough to come very close to letting it all out on this poor lady who rushed to hold the door open for me, giggle inanely, and say "You're pretty good in that thing." I just managed to hold my temper in check, which is a good thing. Its hardly her fault I had been glared at impatiently by state and federal government employees for trying to negotiate the physical obstacles they had placed all over the joint.

Later that day, I fell into a long pondering about my pain levels and functionality. I spent twelve and a half years in serious pain 24/7, and came to accept the constant pain hazing as a condition of my life. I accepted that I would always be in full tactical planning mode for the simplest of home activities, that I would always be a burden, and that I would never have a good quality of life. (But hey, during this time I also just denied that I was disabled!)

The last two years have completely turned this view on its ear. Over the last two years of wheelchair use, my pain levels of ratcheted down immensely. These days, two aleve a day means I experience only intermittent pain.
It is a strange feeling, one I'm still getting used to. I feel more healthy, able, and strong than ever, even though I now mentally categorize myself as a disabled person. I'm in the process of getting married, setting up a new life in another state, and helping raise my niece. I'm active, happy, and have an undeniably good quality of life.

In fact, I was feeling so well I began wondering if I still needed to use the wheelchair at all! So after much pondering, I spent about three and a half minutes hobbling around the house, pushing the 'chair in front of me so that if I fell I wouldn't be stuck on the floor waiting for someone to rescue me. In that short time, my hips completely inflamed and starting shooting strong pains down into my toes. I had to accede that yes, in fact, I had not been miraculously cured when I wasn't looking. Unfortunately, my hips haven't forgotten the slight and are still yelling at me, but it was good to know. It was good to push my limits. It was important today, when the baby and I got stuck in the livingroom due to an oversight (which is down a hard ramp) to know that it was safer for me to shuffle the 20' to her crib and exert all my self control to keep my leg from collapsing than it was to try and balance her on my lap while attempting the ramp.

It fascinates me how much pain can become part of your self identity. "I am Tokah" quickly becomes "I am Tokah, that person who is in pain all the time." But I'm not. I'm just Tokah, and what I'm functional to do at my lowest doesn't define me anymore than how well I do at my best. I might currently be dextrous, mediocre at writing, and not conventionally attractive, but none of those things can define who I am. They color my life, cause me to have experiences that shape who I am, but becoming suddenly clumsy, a brilliant author, and beautiful wouldn't make me any less Tokah.

May 2, 2007


Last night, I made a serious faux pass: I forgot to consider audience I was talking to, and in doing so pretty much ended the whole conversation. I had gotten so comfortable talking online to other members of the crip community, I goofed.

I was in an IM conversation with one of my friends who went away for school. The conversation meandered, from why my wheelchair was named Camel, to how he would want a 'chair with some kind of villain fighting acid spitting device, to how I was so anti-attachment I was trying to take the wheel locks off, to how I needed to learn how get off the floor and into the chair first before I could take that leap. He commented, "See, I wouldn't have thought of learning that in advance."

"That's kind of funny," I replied, "because I didn't think of it until..." and then I proceeded to casually tell him this story:

I was going to work one day. The mortgage company I worked for had a second floor suite. The elevator was a little jerky, and on my way up somehow I fell over backwards. I honestly don't know what precipitated the fall, as I hit my head in succession on the elevator door and then the floor and briefly lost conciousness. I woke up a minute or two later with my knees on my head, a pounding headache, and a realization I didn't know what to do. I had never learned to do a floor-to-chair transfer. I somehow hit the "open door" button and pushed Camel out into the hallway, then crawled out after him. The hallway down to the suite loomed, looking longer than ever before. I grit my teeth and started crawling it, pushing Camel alongside. A few people came out of their offices along the hallway, looked at me, looked away, and then rushed for the stairs. I finally made it to the suite, and my coworkers got me off the floor and back into Camel.

His only two replies were, "Wait, no one helped you get to your suite?" and after my affirmative reply, "That's terrible." And so a very pleasant 45 minute conversation was brought to a screeching halt. He sent me a funny link later, but we couldn't really get the chat going again.

The experience I described certainly was a negative one, overall. It was pretty humiliating and made me question my ability to work outside my home for a little while there. However, it was a fairly typical type of experience for an american PWD. Many like it are described in this thread. These things aren't shocking to us, they're common and shared experiences. I could list more like it, if I had reason to. It happens, its the kind of shared experience that binds disability culture together. The circumstances might be different, especially for someone who's impairment is mental instead of physical, but the feeling of being less than a person in that moment is the same.

Previous to joining the online crip community, I didn't feel comfortable in any context talking about it, though. I talked to my friends about matters of love, about shared hobbies and social drama. But I never talked to them about what it felt like to have one's chronic illness disbelieved, to be accused by family of faking needing a wheelchair, or anything of the sort.

This was a first for me. It was the first time I mentioned a seriously negative disability-related experience to an AB friend who isn't family for all intents and purposes. I feel a little guilty about it, about making things awkward between us. But on the other hand, I wonder if that doesn't need to happen more often. Do ABs really think that this stuff doesn't happen all the time? Are they that sheltered from it? Would education help? I don't have the answers, but now at least I have the questions.

May 1, 2007

Universal Design... not!

Its 2007, and there is still disablism, in case anyone was confused on that point. ;) This is my entry for the second annual Blogging Against Disablism Day. The first one was my main vehicle into disability blogging, so I'm very happy to get to take part in it this year. I will apologize in advance, its not as grammatical or smooth as I might like. This is a topic I'm pretty upset about, and it shows.

As it says in my little bio blurb up there, I am among other things the third parent to a darling little girl who just turned six months last week. When she was first born, I was very worried about my ability to take care of her, but as I got a chance to try it out, my worries turned to a different tune. I was perfectly able to take care of an infant, what I was unable to do in many cases was make any use of any of the care devices. There is a notable dearth of child care equipment with room under it for my feet to go, or an arms level access.

So here we are, six months later. I can't use any of the highchairs we've seen, so I feed the baby on my lap with a towel to protect my clothes. I affectionately call her bouncer chair the "demon chair", as its terribly low to the ground and I hate being off balance when I put her in it. It makes me feel like I'm going to drop her. The changing table is an exercise in back pain, and the walker barely passes muster. And mind you, we knew in advance that I'd be taking care of her, and many of these things were bought with that in mind!

Cribs and playpens get a special mention. In the early days, we used a bassinet when I had the baby, and all was well. It had room underneath it for my feet, it had casters on the bottom, it worked great. But bassinets are a phase, and soon she was too heavy and mobile for her bassinet. The crib came out. Cribs, by their general construction, are useless for me. If the side is up, I can't reach over it. If its down, it blocks me from getting close enough to reach into the crib. Playpens have similar problems, even if I pull up along side, I can't get two arms into them. We're adaptable people, we looked at our other options. For a long time, she spent her days surrounded by many pillows on my bed. She loved it, it was easy for me to use, and we put off worrying about it. But this phase has also just come to an end. She is now capable of pushing herself over obstacles and off the bed about as fast as I can disengage my wheel locks.

There are some internet sites dedicated to disabled parenting, but mostly they show you how to build or adapt existing equipment, there's nothing you can just purchase and use.

On an interesting point, I have not actually had any problems with my hearing impairment in this way. The only sound based device, our baby montior, has a little light display to tell you what volume the baby is at.

I'm frustrated. I'm not a fanatic, not every piece of baby gear needs to be usable by 100% of the population to satisfy me. (Though of course, I'd be a huge fan.) I, for instance, will not appreciate a stroller who's catches are labeled in Braille. There should be one to buy, though, for those who do. And there should be strollers that hook into manual wheelchairs for propelling, and a high chair or two that has room under it for a wheelchair. There should be equipment that has bigger, easier catches for use by people with limited hand motion or strength. They sell utensils, desks, and even shoe aids for PWDs, but not child care gear??

Though society would like to think so, we are not sexless, infertile, spinsters who weave baskets all day. We are mothers and fathers, godparents and babysitters. We need adapted gear to take care of kids with just as much as we need aids for other daily living activities.