Invisible? Maybe

Last week I read a blog post by Ami Claxton, Ph.D. called "Social Isolation: Are People With Disabilities Invisible?" Dr. Claxton's husband, wheeler, is a fellow quadriplegic. He has a lower level injury than I do and is able to breath on his own, but deals with many of the same issues as I do. The article goes on to explain several social complications presented to families like mine. I suggest reading it first, I will wait until you return.

Welcome back, I hope you liked the post as well as I did. For the most part, I agree with Dr. Claxton's blog, but there are a few things I would change about it. First, as a C2/3 vent dependent quadriplegic, I am definitely not invisible. I use a 400 pound wheelchair with large rear wheels, am a couple feet long, and, until three years ago, use a mechanical ventilator that constantly makes noise. Any time I'm out in public, I get noticed by anyone in the vicinity. Invisibility would by highly advantageous at times, but that is not a luxury I have. Rather than invisible, I would argue more toward unknown, misunderstood, or even scared.

As I have said in previous posts, I require someone to be with me 24/7, this includes while on the rare social outing. This gives me the added challenge of always needing to cover two in case of paying for entry and feeding more than one. Most caregivers are older than me as well, so if I'm out with friends my own age, I have to also try to fit my assistant into the conversation. This can be difficult when she is near retirement age and decides to talk about her grand kids' activities or, better yet, her husband's stomach issues while having supper.

For a few years, I attended a young adults' group at my church. We generally met two Fridays a month, once for Bible study and again for a fun night. One year, we met almost exclusively at my house. It was accessible and obviously easy for me to get to, but it did get crowded quickly. It also got tiresome asking my parents to prepare for company so often, but it did work and the other attendees were very helpful in cleaning up afterward. One meeting in late November everyone started talking about what to do for our Christmas party. After a few suggestions, one person offered meeting in their parents' basement; it had a big screen TV, Wii, and plenty of room for everyone. I almost just kept my mouth shut and just figured I'd stay home, but I asked if it was perhaps a walk in basement (I do have portable ramps).

Their faces turned from glee of party planning to disappointment, it wasn't accessible. They offered ideas of carrying my chair down the steps, but knowing the full weight of my chair and fragility of it, I turned down the offer. After about a week, it was decided we would meet in the church basement. It was a fun time, but not what they had been looking forward to a few weeks earlier.

Over the next few years, we primarily met at church, but I didn't make it every time. Last year, the group did area mission type work, like sorting items at the local thrift store whose sales purchase Bibles for missionaries. That kind of activity is great for a church group, but not for someone who has no use of his hands. So as to not be the proverbial talking bump on a log, I didn't attend any of last year's meetings. This year, I have been removed from the email list and don't know what they're doing or when they're meeting. Since I didn't attend or show interest last year, I understand, but it is nice to at least know what's going on.

Social isolation is an unfortunate big side effect of having a severe disability. Almost any time I'm in a group of people, I see more backs than faces. In these situations, I also don't know what to do, I am not up on a lot of current events, especially sports, and don't know what to talk about. To be social, you need to have been socialized first.

In the case of an evening event, it gets even more difficult to plan. I only have an assistant on Friday nights, and she doesn't drive my van. Therefore, I require my parents' help for any such time. Then I factor in how long I should be up in my chair and if I can participate. Therefore, I've become very used to being "friends" with my computer and hanging out in my room. It is nice to have alone time, but real friends are great to.

Fortunately, my parents have friends that we invite on occasion, and I have church activities I'm required at weekly and another a couple times a month. These are currently plenty of interaction for my taste. Maybe next year will see a change and I can get out more often.