I have always been a little off center. Growing up, I never owned a Barbie doll, but made homemade doll dresses for the then-current Barbie rival, the “Tammy” doll. In the PC-dominated computer world, I used a Mac computer for years. My favorite spectator sport, hockey, gets little media attention (go Detroit Red Wings!) All of these not-so-popular aspects of my life prepared me for living on the fringe as a person with a disability.
When people with disabilities are excluded from the rest of the community, everyone misses out on the rich experience and perspective we have to offer.
Living with MS and using an electric scooter means I spend some of my time “living on the fringe” unfortunately. That’s never more obvious than when it comes to accessibility. Take restaurants, for example. I don’t necessarily like it when I have to use the back door ramp (the same one used for deliveries or to wheel out the garbage), but I can deal with it. And unlike an able-bodied person, I can’t “run to the grocery store,” I have to load and unload my scooter into my wheelchair van every time I get in and out of the vehicle.
But one of the hardest things to deal with is the misconception about what I can’t do. Friends sometimes don’t invite me to outings because they think I’ll be too tired. I’ve even been overlooked for volunteer positions on boards because of my disability (even health-related boards!). A popular mantra in the disability community is, “Nothing about us without us.” When people with disabilities are excluded from the rest of the community, everyone misses out on the rich experience and perspective we have to offer.
Twenty years ago the Americans with Disabilities Act was passed. The skeptics say this law is only on the books and isn’t fleshed out in daily life, at least not to the extent it should. Thanks to the advocates of the past and today – and, of course, products like my BraunAbilityEntervan – I’m moving further from the fringe and closer to center.