They see me Rollin‘ – I love it (or walking is overrated)
„We want our child to grow up as normally as possible“ – most parents of disabled children probably feel that way. Understandable, since nobody wants to be defined by their handicap. We’re all different: One person might be a big fan of music, another loves horses, still another is an avid bookworm. But what is „normal“, anway? Do you have to be able to walk in order to be normal? Is it more „normal“ when a child is able to walk (with or without mobility aids), but only very slowly and with great exertion … or when she‘s in a wheelchair that makes her as fast and mobile as her peers? Is it more normal when a child with spina bifida can poop without any aids, but then soils her pants while playing or has constant stomach aches? And what exactly is so desirable about trying to teach a child that has no control over her bladder how to „pee like a normal child“? You’ll achieve only one thing: That the child constantly feels like too much is being asked of her … that she’s somewhat inadequate. Because she simply can’t do those things!
These issues frequently crop up on self-help forums and in self-help groups. I always try to show the parents that aids are not a bad thing – that they make life a lot easier and enable you to do a lot of things that wouldn’t be possible without them. I was born with spina bifida, and it took me years to understand that a wheelchair, for example, isn’t abnormal just because the majority of people don’t use one.
Until a year ago, I never used a wheelchair. I walked, exclusively. First without any crutches, later with crutches. When I was a child – even when I was already in primary school – I was put in a buggy for longer distances. Later, I used a scooter to race through the supermarket. That was a real help back then, but today I wonder … why not just a wheelchair? A mother pushing a child in a buggy is a common sight, but a mother with a child in a wheelchair? And a teenager on crutches? Shit happens, surely she just broke a leg. And a wheelchair would look „totally retarded“ anway.
Thankfully, I changed that attitude. About a year ago I was in rehab – I wanted to get rid of the crutches! And in a way, I did exactly that … just not the way I had imagined it. My goal was to finally have my hands free. To be able to push a suitcase or a shopping cart for once. Not to have to walk hunched over all the time. It was exhausting, impractical … and it looked stupid to boot.
While I was in rehab, people suggested (like they had so many times before) that I should use a wheelchair for long distances (more on that later). But this time, I actually tried it … and it was one of the best decisions of my life!
For the first time, I really embraced the idea. If I was going to use a wheelchair, I was going to go all out! I suddenly realized how many things were possible now. Things that used to be inconceivable … despite the fact that I had always thought I was already doing everything I felt like doing. I had a car, I had gone on a weekend trip to London on my own, I had my own apartment, I was going to punk concerts. But now, all of a sudden, so many more things were possible! I was even able to engage in sports! Cumbersome grocery shopping with a shoulder bag – which had always annoyed me endlessly – was a thing of the past. Sitting in my wheelchair with a shopping basket in my lap was actually fun! I also didn’t have to get into my car anymore for short distances. I simply wheeled there.
Most of my family and friends quickly became aware of these changes and were happy for me. Some people, however, didn’t immediately understand. „You’re going to become lazy. Sooner or later you’ll stop walking altogether until you’re unable to do it at all.“ Even that’s a sacrifice I would have been willling to make, but by now I’ve met countless wheelchair users who’ve been using their chair even for short distances for years without losing their ability to walk …
It’s always about balancing cost and benefit. Walking in my apartment – with only one crutch, as I have to be able carry things from A to B – has made my scoliosis much worse over the years. My knees creak with every step I conquer on a staircase. And walking, as I have mentioned, is extremely exhausting for me. So why should I continue doing it if I can just as well use my wheelchair? I can use sports to challenge myself, but my everyday life should be as easy as possible. Struggling to walk from one seat to the next instead of easily rolling around in my weelchair is not a sign of will power. It’s simply idiotic.
If people keep telling you that the wheelchair is „only for long distances“, they’re also implying that the chair is something that should be avoided whenever possible. I can’t understand why so many people don’t view the wheelchair as a perfectly viable substitute for walking, if walking is only possible with great exertions. What’s so bad about a wheelchair? Why is walking „the only real deal“? Maybe it’s because able bodied people simply can’t imagine living without something that is so trivial for them that they simply take it for granted?
I think it’s the same with catheterization. Many non-disabled parents (and doctors too, unfortunately!) just can’t believe that a plastic tube in the urethra doesn’t hurt (it really doesn‘t! 😉). Instead, they let their kids run (or wheel) around in diapers until they go to school … or much longer. By doing so, however, they not only jeopardize their kids‘ self-esteem, but also their health.
My conclusion: disabled and normal – that’s not mutually exclusive! Use the available aids to make your life easier. Go bungee-jumping or bake cakes if you need a challenge, whatever! But don’t restrict yourself in the hopes of being closer to the norm.
Lisa Schmidt: Blog