Saturday, September 26, 2009

"New" Wheelie Friend

I have a new wheelie friend today--she's new to me as a wheelie, but not new to me as a friend. My second cousin, herself a twin, whom I mentioned a while back, has arachnoiditis and uses a manual wheelchair when she's out and a small scooter at home since she can't power herself. She's so tiny her husband can carry her and her manual wheelchair up the steps into my grandmother's house. I will never be that tiny even if I were very, very thin. It's not the tininess I'm jealous of, but rather the ability to get herself inside in her chair.

When I visit others, I can't get my scooter in. So often I can't attend or must sit in one spot, or I must build in some real "suffer time" for recovery later from being unable to use the scooter or sit comfortably. And yet some people's perceptions of me can be that I'm not very disabled (because they've never seen me using a wheelchair or scooter), or that I'm lazy (not getting up = "giving in," "not fighting it"). Very close relatives--my husband's sister and grandmother, friends we've known for many years whom we see regularly (well, I'm absent a lot) have never seen me use it. Since I can get around my own home well, it really bothered me that my mother-in-law refused to have my own son's (!) and my husband's birthdays here, even though we have the space. I run into this kind of thing a lot. (We can get the smaller scooter in but I have trouble sitting in it for long--transferring in and out multiple times also increases pain unendurably).

Here's an argument for universal design--everywhere. Disability cuts us off from family and friends first. Often I can go to public places for a while but can't go to others' homes because the pain of getting around without the scooter is too much. I can't go out to the pool area where everyone else is, or up to a game room, etc. I can't carry portable ramps in dozens of possible configurations--and thresholds are still a problem. Even when I walk to get in, big steps or a series of steps are a huge problem. I can't gather in the kitchen with everyone else because I can't stand up long and hard chairs hurt--very badly, even with a cushion.

Seeing my cousin's level of disability makes mine seem like a walk in the park--no, a jog in the park--in comparison. It was strange seeing myself looking as if I have high energy compared to someone else my age. She's on a lot of pain medicines, speaks slowly from that and pain, has trouble with word retrieval, etc. She's rarely able to leave home at all. Arachnoiditis causes severe nerve pain, and she has tremors when she tries to hold something. She had questions about wheelchair lifts and vans, and we compared a lot of notes about household assistance (from husbands--hers also helps a lot), how our children cope, and how people react. I'm glad that we both will have each other to talk to.


Elizabeth McClung said...

I am glad, it is an odd feeling to me, to meet someone and so soon talk as if we are the closest, as if we know each others lives - but in disability world, we often do. To compare notes, to ask about which devices work at home and which don't, how the caregiving goes and if this service or that assists, we speak the same language, one the people around us have no idea about - it is like the military I think, some sort of shared experiences. Some sort of shared bond. Every person with an impairment is an individual, but I must admit, I am glad when there are wheelies around and not just me, and will support her in an arguement, even if I don't know her/him or we are not a personality match. Her/His rights are my rights, so their frustrations at service/access/treatment/language are mine as well. The importance of toilet paper in a wheelchair bathroom IS important, whether the staff at a Walmart or Safeway this it is so.

I am very glad you have someone to talk to as well. As years go, you have had a true 'life changing one'. Yesterday, a visitor to fix my life-line phone could not believe that I had been an active athlete only a short while ago (two years? How long did I spend in testing?). I don't know how to talk AB anymore. I am glad you have a family connection and friend so that you are a force, an accepted part of the family (I hope).

FridaWrites said...

I agree--there are common issues we have no matter what! And it is good to be able to ask advice about technologies, medicines, etc. That's a good comparison--there's a certain bonding. No matter how understanding some people are, there's no substitute for speaking with someone who is in the same trauma-inducing situation.

I don't know about accepted--I reached out to another family member who was dumped out years ago--abandoned as a little girl--and now family members are ostracizing me for that, for "taking sides." No, I didn't take sides, I called someone who was expressing extreme pain.