Refocusing the narrative

[becomingkate]

 My journal here and at livejournal has largely been indulging in many things. Rants about life, venting about frustrations, a way to cope with tough times, and I think it has been theraputic at times but I feel like I've been ignoring parts of my identity almost completely because they don't show. I think it's time to talk about them.

I think I have rarely talked about my disability, spina bifida, except in recent months when health issues have flared up. I don't think of myself as disabled because it is largely invisible. I can walk, I don't use any assistance, I don't have a handicapped tag, to anyone watching me I appear abled. I fumble to use the right wordage because I rarely talk about it. I don't want to say "normal". 

I spent most of my childhood dealing with spina bifida. I was constantly on pills, being taken out of class for physical therapy, getting excused from gym, and faking an injury or illness when I wasn't excused. I had lots of embarrassing physical issues besides being more awkward than kids are supposed to be in the first place. I couldn't keep up when my friends wanted to run around or climb the playground pieces, and I didn't learn to ride a bike until I was 12. I used to uncontrollably wet my pants well beyond the expected age. I was in and out of the hospital for surgeries and invasive procedures since the day I was born. They finally stopped when I was about 14.

I know I've grown up with lasting effects from this childhood. It's only now that I'm starting to realize what those effects are. I lived a wonderful doctor-free life for many years because I went on strike after my childhood. As soon as I moved out and made my own decisions, I stopped seeing specialists. I didn't want to admit I might need them still, and I didn't have the foresight to realize what the lack of upkeep might lead to in the future. My parents begged me to go back to the specialists, but I thought that's what parents are supposed to do, right? Worry needlessly?

I get excessively uptight and anxious about blood draws and IV's because I went through harrowing experiences (even recently) where they had to stick me numerous times, sometimes in nonconventional places.

I feel like by not speaking up about what it's like to deal with this, I am contributing to the silence in this issue. People assume you're either visibly abled or visibly disabled. If you can't see it, it can't be that bad. People who have chronic pain or other health issues that can't be seen deal with doing things like an abled person would, or being criticized. If I went to use the elevator instead of the stairs, if I'm having a hard time getting up and down that day, because I do deal with leg and back pain, I'd be judged for not leaving the elevator empty for someone in a wheelchair. If I got a handicapped parking tag, I'd be looked at funny, or maybe even confronted, when I walked away from my car.

I've struggled with sex for a long time-when I was younger and having casual sex, I could position myself in a way where the guy would not see any of my scars, and heaven knows they didn't care if I got off (I never did get off, until I met my husband), so I didn't have to explain that I have limited feeling in that region and it might actually take some work. Then when I met my husband, who actually did care if I enjoyed it, it took months for me to figure out what would get me off and lots of explaining that it wasn't his fault. I figured out some nonconventional ways that got me there, then I felt guilty for liking it.

When I got pregnant everyone was afraid for me. Would my body be able to handle it? Would I have to stay in bed for months? Turns out, no. I worked as a cook well into my pregnancy, finally quitting at 7 months pregnant, I think it was. I had a c-section planned because they said that was safest for me and my son. I wasn't complaining, as I was pretty worried I wouldn't have the lower body strength to push. I ended up with an emergency c-section because my water broke. I could dwell on whether or not it was the "right" way to do it, but the point is that my son and I came away healthy.

Through the years I've dealt with many ups and downs, and realized the stereotypes people have about ability. I've noticed how much more difficult it would be for someone with special needs to cope with just about anything. I noticed that accessibility sometimes seems like an afterthought. People would have to go out of their way to get accommodations. This seems like the opposite of "accomodating". It should not be the responsibility of the user. When you say a place or person is accomodating, you mean they are open and welcome and easy for all to use or approach. However, it seems the opposite in a lot of cases.

I hesistated for years about speaking up. I didn't feel it was my place because I know a lot of people have it a lot harder than I do and I don't want to speak for them. But I hope that adding a voice will make it easier for them to speak for themselves.