Don't call me disabled

When I first started using a manual wheelchair in 2005, I was really not happy about it. I told myself this is just for now. I can't wait until I am walking again and I can tell the tale about I how I overcame this setback. I patiently waited for improvement. It never came, but the deterioration was so gradual I didn't notice. Meanwhile, I was also not ready to call myself disabled. I was 'temporarily not walking'. I could stand for a minute or two at a time if I was holding on to something. I could transfer from my bed to the wheelchair to the toilet or the shower bench. I could use my toaster oven or my hot plate safely. I could live independently just fine, thank you very much.

I was also set up with the local transportation organization. I had paratransit, which is a federal program that runs throughout the United States, but only in urban areas. I lived in an area that was a bit too rural, so I was using the program Maui had if you did not qualify for paratransit. The point is I had transportation. I was actively involved with the Maui Wheelers, a group for people who used mobility devices, and the MDA, Maui Disability Alliance. Sounds like I identified as disabled, doesn't it? Oh, but I found ways around it.

I used distinctions to differentiate myself from someone whom I might think of as disabled. The alliance was made of organizations who worked with disabled people. There were not many actual disabled people running the organization. I have the distinction of being in the group of people who were able-bodied and then through accident or disease, became disabled. I am thankfully in the smaller subset of people who can still communicate clearly, think straight, and are not debilitated by resentment.

Disabled people, including me, are understandably not usually able to complete a full day's work. I say that and then immediately think of plenty of disabled people who are completely able to do that. Everybody's disability is different. (I want to be careful and not insult anyone.) I have the same cognitive abilities as the people who were running the alliance. I am not saying that people with intellectual and developmental disabilities cannot contribute. They can. They just cannot contribute on the same level as people running the alliance. They would not be asked to plan things, and that's how I was able contribute. (I hope I made it through that minefield alive.)

I joined the alliance at a time when there was no leadership from the people who ran the organization. There were lots of smart people filling in temporarily for the person who would eventually be hired to run the group. I was part of that cadre of people. Every year, for the past almost 40 years, they had held a legislative forum for local lawmakers to discuss issues important to people with disabilities. This year, instead of a dry forum where people spit up lots of facts that no one remembered, they decided to do a skit.

I was a former theater major from UCLA, so I knew from a skit. I got involved and ended up rewriting the entire script. I also volunteered to perform and gave myself all the wordy exposition. Yes, I had more lines than anyone else. Yes, I am a big ol' ham who enjoys the spotlight. What of it? Nobody complained that I was talking more than anyone else. They were grateful they didn't have more to say. That's what I assumed anyway, so shut up!

The skit was a breath of fresh air for everyone who attended. It went over like gangbusters, and I thought to myself, what are you going to do next year? In a flash, I had a revelation. A game show. It was the perfect question and answer format that would lend itself to disseminating information. Everyone loved the idea, and Ohana Feud was born. (One of the meanings of ʻohana in Hawaiian is family or community.)

The game show ran for 3 years and was a great success. I love telling that story as I am the main character and I come off as very clever. I live a lot of my life attempting to do the right thing and trying to look as good as I can. I know there is a big difference between how I see myself and how others see me. That's true for everyone. Knowing that helps me to be okay with not looking the way I want because I know others won't be so harsh.

There is a part of me that is envious of those who are disabled because they had an accident. This is because their disability is stable. It does not gradually shift and change over time like mine does. The changes happen slowly over years, so the minute I think I am okay with how I am now, I start changing again. I am really nervous about how I could deteriorate from here because I am close to being at the very bottom of the barrel. Unfortunately, I have learned that things can always get worse.

I have accepted that I am disabled, but I don't want to look (as much as possible) or sound disabled. I'm great on the phone. Or radio. Somewhere the visual does not clash with what you're hearing. Immediately, I know that 'clash' is completely in my mind. No one sees me and says to themselves, she sounds smart, but she looks like an idiot! Nope, that's only what I say to myself. My genetics are not helping, as I have inherited my father's male pattern baldness. I never have to worry about hair getting in my eyes. I just have to get used to my vast expanse of forehead. Ugh.

It really does suck eggs to not be able to do something you used to be able to do. And then I think of the people who were born with disabilities and never got to experience being able-bodied. That's when I stop complaining and feel lucky for the typical able-bodied lifetime I had before things got 'interesting'. I am living the Chinese curse. So go ahead, call me disabled. That's what I am, even if I will always be working on being proud of it.