So, the big news is that I finally got myself a damned scooter. Ever since I can remember, I’ve had a wheelchair to get around long distances. The problem with the wheelchair – ever since I learned to drive – was how to get around in it independently. As I’m sure you’ve noticed, wheelchairs are pretty cumbersome to lift into cars, especially when you measure 4′ and thus everything pretty much requires you to lift to shoulder-height or higher. Try getting one of those folded monsters into a trunk! It’s almost half my weight and close to my size. Thus, I have pretty much only used the chair when I’m with someone who can do the lifting, and the pushing.
That’s another problem: pushing my own chair with extra short arms that don’t straighten. They can only lower the seat so much before the center of gravity is totally off, and tipping becomes an issue. To get the totally customized chair I would need to be independent in it (i.e. lifting it AND pushing it) would mean a $5,000 price tag ABOVE what insurance covers, because I’m not wheelchair-bound.
I feel like being disabled is an eternal Catch-22: too disabled for some things, not enough for others. Insurance will cover this, but not that. You can walk? No fancy schmancy chair for you! Oh, it kills you to walk long distances because you have the worst joints on the planet? Suck it up! Wait until you can’t function permanently, and then we’ll cover it, mmkay?
What about a scooter? Have you seen how heavy those monsters are? There’s a reason people need lifts for their cars. 1) I don’t qualify for the lift because I don’t qualify for the scooter full-time (i.e. I don’t use it in my house); 2) I really don’t want a mobility van, or a lift on the back of the Prius (it has a hatchback).
What the *@#$ do I do? This was me this summer when I found out I had a semester to get through before I could have my ankle replacement. Getting around campus on my own two feet last semester left me in great amounts of pain nightly; my quality of life was nil. I knew I would be returning to teaching full-time, which mean hours on my feet in the classroom – even if I try my best to sit, there is something in my DNA that wants me to stand to teach.
I decided to look on the Little People of America (LPA) web site to see what advice they had about mobility devices. And what did I find? A link to a miracle! (Cue the music of descending angels).
Ba ba ba bum! Enter the Travel Scoot!
This little sucker (or at least the version I got: Travel Scoot Shopper Junior) weighs in at a whopping 26 pounds fully assembled, and 16 pounds sans battery or seat. And look how it folds! Not only is it below the 20-lb limit my surgeon set to lift routinely for my shoulder replacements, but it folds up so teeny tiny and fits multiple places in my car. And, I paid for it myself… no insurance coverage for that, mmmkay?
Now, life is magical. End of post.
You clearly don’t know me, if you believe that crap.
When the scooter came this summer, I was excited. I walked the dogs! I scooted around stores. I learned to unload it and unfold it in less than 5 minutes. Life should be fantastic, right? Well, this is where my lifelong attempt to avoid mobility aids rears its ugly head…
Those of you who’ve known me since before college grew up knowing me with crutches. Yes, I used crutches from age eight (the age of my final and correct diagnosis) to the age of 18. Those of you who’ve known me since before age eight also knew me with leg braces. The sexy kind, like Forrest Gump…
… though I never could run like him.
Why did I give up the crutches in college? Oh, because I thought it was the chance for a new start and that I could fool people about the extent of my disability. I told myself I only needed the crutches because our high school was so crowded and that I was so easily tipped over, which was true, in part. If I had been truthful with myself in college, I would have admitted that my hips were already very painful and that distances without crutches were tough. But, whatevs. I had a bike! No one would know. I would be like everyone else on campus, yes I would.
I hobbled along through college, and I managed, thanks to a very accessible, inclusive, and small campus, and the bike, and then a car. My hips were growing worse, but my surgeon had told me to hold off on hip replacements until I was in my 30s, if I could (I made it to 28). I even started doing yoga in grad school and lost tons of weight.
However, the reality is that, as hard as I try to keep fit and healthy, it only goes so far. My DNA is at war with my joints. In 10 years, I have had 5 joints replaced, and the sixth will be in January. I think that my attempts to leave behind the braces, the crutches, even the wheelchair, was an attempt to kid myself into thinking that mind over matter could work for my disability. The reality is that 10 years on crutches, lifting myself into the car, on counters, etc. ruined my shoulders. My bad hips ruined my knees. And my less-than-stellar knee replacement ruined my ankle.
I’ve spent the last year coming to terms with the fact that, much like my early childhood, regular surgeries are the norm; it’s the years form 12-28 that were the abnormal. I sometimes get angry with myself and think that if I had just given in and put my ache for normality (i.e. a normative body) on the back burner, I might have saved myself some pain and had more time between surgeries. I needed a scooter in college, in grad school, and as a professor. I need one to get around and not suffer. So, why did I wait so long, even as an adult?
The answer is: the facade of normality. I’ve spent so much of my life proving to people that I could do things they did not expect of such a tiny person that I couldn’t bear to let them see a chink in my armor. Getting Max was the first step in my public admission that, no, I couldn’t do it alone. And, I had to put up with a lot of people wondering why I needed him when I seemed fine. I’d dug myself into a fine mess. When I rode onto campus in August with the scooter, I didn’t use it as much as I should have, but then the first time I was able to run several errands in half the time as usual and not be in pain, I was convinced.
I still feel weird. I still know people wonder why I have a scooter. I know this because people ask or make comments. People think something “happened” to me. I just tell them that I’ve needed it for a long time, that my body is a mess, and that this gives me a better quality of life. It also helps that Max isn’t nearly as able to concentrate on squirrels as he is when walking at my on-foot pace. Always a silver lining!
I’ve been able to do so many things with my scooter. Unlike with my wheelchair, I don’t need someone to help me. I’ve got this. Airports are easier. Shopping is easier. Getting around is easier. Life is easier… mostly.
What’s not easier? Getting around inaccessible spaces. Having Max has opened my world in so many ways, as he can help me to get into spaces that are inaccessible by bracing me on stairs, helping with doors, pushing carts, etc. But, having the scooter, has in some ways, put me back a few steps: though the scooter is magical, it cannot open doors or go up stairs. Once Max and I learned to navigate my not-quite-accessible campus together, along comes the scooter to shed a brighter light on its shortcomings. For example, when a power assist door button is out of order (happens at least once a day somewhere on campus), Max can help me open the door (which is extra heavy when the power assist is broken). If there is no button, he can help me. Yay! But, when you are on a scooter and there is no (functioning) button, how do you get inside? How?!
I’ve learned to ram my way into spaces that allow such things; I’ve learned to wait until someone comes along to let me in; I’ve become an even bigger pain in the ass. I complain. A lot. To everyone. I don’t care. How does a university spend millions of dollars on renovations and a new building and plan so poorly? The buttons for the newly renovated library are in the most insane place I’ve ever seen, and they didn’t work for about the first 3-4 weeks of classes. The president’s office doesn’t have an accessible entrance. People are constantly blocking doors and ramps. And disabled spaces.
In the end, I guess what I’ve learned from my scooter is to use the fact that it puts my disability “out there” for a good cause: activism. If it makes people see my disability, so much the better. I ain’t going to shut up.
Watch out. Dwarf on a scooter. She’s coming for you… at about 2.3 mph.