It has been far too long…
The last six months have been incredibly busy. My summer work schedule was intense, and I didn’t have the spare time (or energy-or brain capacity) to blog. I just read over my last post, and it is actually topical about what I wanted to talk about today.
I’m listening to the Beethoven Missa Solemnis, conducted by Jeffrey Tate. When asked about my favorite composer, I can answer without hesitation. I feel such emotional attachment to his music-and to what he represents to me. He experienced such struggle in his life, and yet accomplished so much. I can’t imagine what it was like to live in a time when disability was so misunderstood, and shunned. I’m also in awe of his ability to compose such beautiful music even though he couldn’t hear it. He wasn’t really appreciated in his lifetime, and he didn’t find success.
I had an assignment of sorts this week. I was supposed to “research” other people with disabilities-spina bifida specifically, to try to understand their perspective on their disability. Throughout my life, I’ve known a few other people with disabilities, but I don’t feel like I share a similar experience or outlook with them. I realize that I may have a close-minded view, but I tend to form relationships with people based on shared views and values. I don’t think it is healthy to define yourself by something that is only a small part of who you are. I realize that it is something that people notice right away when they meet me. It isn’t something that I try to hide, but it also isn’t something that I feel a need to dwell on. I think that if you dwell on all the things you can’t do, you miss out on the things you can. I don’t see it as denying who I am, but as not obsessing over something of which I have no control.
Nonetheless, I decided to start by googling spina bifida. I know the scientific information about it. I know what it is, and how it affects those who have it. I know that there is no absolute known cause, and that it isn’t always preventable. Most of the groups and information that exist are for parents. I understand that it must be traumatic for a parent to have a child with a severe disability, and there is (rightly so) support for these people. There isn’t as much for adults with disability. I don’t know if it is because we are expected to be well-adjusted if we make it to adulthood, or if scientists and doctors just don’t understand or care. The few things that do exist are created by my peers. I realize that there are probably other people in the world with similar experiences, but I don’t often seek them out. I guess I’ve just felt like most of my needs are being met by the immediate people in my life.
So back to the assignment at hand. The Spina Bifida Association is somewhat helpful. There was a link to a yahoo group that I decided to join. I’m interested in getting some perspective from other people who may come from a similar background. I also found a list of “famous people who have spina bifida”. The list includes some names I recognize, and many that I don’t. The most immediate issue I take with the list is that most of those people don’t have a visible disability. While I understand that back pain can make life difficult, it isn’t the same as being confined to a wheelchair. I’m not trying to diminish what someone might be going through, but experientially, it isn’t the same thing. I did discover a few people of note:
- Jeffrey Tate, composer
- David Proud, actor
- Hank Williams, musician
- Frida Kahlo (allegedly)
- John Mellencamp
- Rene Kirby (the guy from Shallow Hal)
As you can see, some of these people have obvious disability and some do not. I must admit, I think I’m missing the point of all of this. Life is what you make of it. Everyone has difficulties. I have more than some and less than others. I despise when people refer to me as “inspirational”. I’m not. To me, that means that you think that it is incredible that I choose to do anything with my life because of what I was given-and indirectly, you can’t imagine how you would cope in my situation. I get that. Some people wouldn’t be able to. There have been a few people in my life who couldn’t deal with having a relationship with me. I don’t fault anyone for that. I just don’t want pity, and I can’t help but feel a little insulted that you view my life as less meaningful than someone who is “normal”.
The people on this list who have done meaningful things with their lives, have done so because they found something at which they excelled, and made the choice to pursue that thing. It wasn’t because they were disabled, or in spite of it. It was because they wanted something and were willing to put in the work. While being disabled isn’t necessarily ideal, and I wouldn’t choose it for myself or anyone I care about, it also isn’t that bad. (Again, I can only speak to my situation.) There are people in the world who overcome extreme violence and poverty every day. People who right injustice and end suffering. Those are the people that we should look to for inspiration.

