To George Carlin

To George Carlin, may he rest in peace

A thought struck me last Friday, at my SCI support group meeting, that there are SO many things we DON’T talk about. Even within our own number, some topics are difficult, and some avoided. And those we do discuss now, are because of a few years of getting together as friends, building trust. With other people in general many topics are taboo. I would guess that non-disabled people avoid these too, but they don’t come up in our lives as often as they do for us gimps. Bladder and bowel control. Ooooh!! Don’t want to hear about that!

In 1989 when “Born on the Fourth of July” came out, I eagerly went to the movies, alone, deliberately alone. It was a really difficult movie for me. I left before the lights came up. I didn’t want anyone to see me! I was afraid there might be someone I knew there and that they would then “know” that I used a catheter, and had problems with my bowels! Or I thought they would assume I had the same problems as Ron Kovic, and I didn’t! I felt SO exposed by that movie. Till then, I had felt that no one had much experience with people with disabilities, so other people and my friends only knew what I told them. This didn’t count medical professionals, though they weren’t much better. I was always teaching the professionals more about me than the other way around.

And yet, on another level I was pleased by the movie. Other than “Whose Life is it Anyway?” in 1981, I didn’t feel like people with disabilities made it into movies in any way. And “Whose Life was it Anyway?” wasn’t exactly uplifting, and luckily (it seemed to me at the time) not really well received. Essentially it was championing a man’s right to die instead of living as a quad. Personally I liked the movie, though it was somewhat depressing, and I disagreed with the conclusion.

It’s been good for me, to be with friends who do talk about some of these taboo issues. Somehow it makes them more acceptable, and usually the talk generates ideas and solutions, which makes the talk even more rewarding besides acceptance. There are times I wish it were as easy to talk to other friends too.

So as I was musing at the SCI support group meeting, I found myself thinking of George Carlin’s “7 Words You Can Never Say on Television”. Anyone from age 30 to 8o probably knows who George Carlin is, for he usually makes the Top Ten list of famous comedians. Kids from about ages 18 – 23 might know him as the conductor of the Thomas the Tank Engine series. I’m sorry that he died a couple of years ago, I liked his comedy, which is not the same as thinking he was funny all the time. I just googled him, his 73rd birthday would have been tomorrow, May 12. His “7 Dirty Words” routine prompted a Supreme Court decision that TV stations did have the right to censor what was on TV. But I think Carlin’s attention was instrumental in putting those words later into cable TV and even mainstream language.

The words may be acceptable now, and many others, but there are still so many topics that we shy away from. Why? What is it in our upbringing that makes it hard to talk about Crone’s Disease and ileostomy for example, if you are the one with the disease as opposed to an intellectual discussion? What is it that causes such shame or avoidance in us all? Perhaps as you get older, your need to appear perfect diminishes? It has for me. Perhaps as more of your peers start to have health problems, it becomes ok to talk about your own? I’m not quite there yet, with non-disabled folk anyway. I hope that will happen. I’m hoping that half the difficulty I’ve had is that I was a young person talking about things most young people have no concept of. Now that I’m middle aged I would like to see this get easier.

I can remember lots of incidents where there was some untouchable topic, that rather than talk about it, I stayed silent and let people think I was just annoying. Let them give me a personality flaw instead of a physical one! A case in point – 1976 or 77. I was an MIT student, and someone called me to say that a group of people were going out for pizza, and did I want to go? I DID want to go, I really really DID want to go!!! But we’d all be out for several hours, so it was a good idea for me to empty my bladder first. At that time I was intermittent cathing myself, that means that every 2 or 3 hours I had to insert a very short catheter up my urethra to empty my bladder. If I didn’t, one of 2 things would happen. Either my bladder would spasm (neurogenic bladder) and push all the urine in it out (I would leak), or it would “decide” to hold the urine till it was stretched too much and let my blood pressure rise (a condition called autonomic dysreflexia, which I can explain another time) to a really painful level. (I knew there would be no bathrooms where I was going, this was way before the ADA.) Neither option is appealing, trust me! Though I wore pampers to handle the bladder leaking, and that worked to a point. I learned not to drink a lot of fluids, and to this day I still drink very little at a time, even though now I have a supra pubic catheter, so it’s not an issue.

Anyway, to get back to my story: I had to cath first, before joining my friends, and cathing and dressing took about 15 minutes. The rest of the group waited for me in the dorm lobby, and was really annoyed I took so long, and I could see this when I finally joined them, but I just couldn’t tell them why. Later I found out it was one particular person who insisted on inviting me, and that the group turned on him as a result, they were ready to leave us behind. That man became a good friend, who I could tell my bladder stories to, but I saw him then as an exception.

If I could generate a “7 words paraplegics cannot talk about in public” list, what would be on it? Bladder, bowels, pressure sores, getting assistance (or lack of independence), and sex – ok, I only came up with 5 topics, but these are biggies.

I’ve touched on the first 4 topics at least a little, and most likely will again in the future. Sex is the hardest to talk about, because it’s very hard to handle it as only about me, and I set a guideline for myself to not say things that were too personal about other people. But even now, 52 years old, having used a chair for 37 years, I still find myself asking – if I say really everything will I get acceptance and understanding, or will I get shame and rejection? When telling this much to even my best friends, the other person’s reaction (if they are truly a friend) is, “of course, you can tell me! It’s ok!” But the reality is that it doesn’t always work out. Some times, some things are just really hard to hear.

And I suppose, that in some way, that is why I’m writing. I’d like to reduce the secrecy we carry with our disabilities. And I’d like to know who my friends really are – for the true ones CAN handle this stuff. And perhaps, just perhaps, writing is easier to “hear” and will pave the way for either my friends, or someone else’s, to later be about to really hear about what our lives are like. We’re not totally different from others, but we do have different struggles and sometimes they aren’t pretty.