Monday, April 19, 2010

15 Surprises About Living With a Disability

The more we've been writing this blog, the more feedback we've been getting from friends and family who are finding out things they never knew about ourselves and our disabilities. There are numerous factors that we always need to consider in our lives, from dealing with snow to being able to reach light switches. Here are fifteen things we deal with that you may have never even thought about:
    1. If you can't feel your legs like Dan, placing hot plates of food on your lap can burn you and you don't even realize it. On the other end of the spectrum, cold temperatures in winter could give him frostbite without him being aware. Constantly being cautious about extreme temperatures is something we always keep in mind.
    2. If you have a personal assistant (PA), you need to buy an extra ticket for them to sit with you at any event.
    3. You have to prove to insurance that your current wheelchair doesn't function properly before they'll give you a new one.
    4. Cars with hand controls still have normal pedals.
    5. If you're slow in front of a crowd, chances are it's not because you're slow, but because the crowd is slow.
    6. We don't use stalls other than the handicapped ones in bathrooms because we don't fit through their doors. We don't just go in the handicapped one because there are bars there (which many of us don't even use), so when you use it and don't need it, we have to sit and wait for you to leave (and then you usually feel like crap-as you should). Also, safety bars in bathrooms are not nearly as helpful as being able to fit through the bathroom door.
    7. You need to give a car rental place 24 hour notice to get a car with hand controls, and there's no guarantee that the car will have the controls on the side of the steering wheel you're used to.
    8. ADA accessibility does not work for everyone that uses a wheelchair-having a ramp doesn't mean the doors are wide enough, the light switches are low enough, or that there's no threshold.
    9. When the fire alarm goes off, the elevators lock, and you are stuck on whatever floor you were on when it started. You have to wait for firefighters to come get you, and carry you down the stairs-which means leaving your chair behind, then causing a problem once you get to the ground.
    10. When you're a minor, you can't make decisions about your disability with schools and ADA issues, but the second you hit 18, your parents no longer can make those decisions and you are in charge of everything-without a transition period.
    11. All wheelchairs are custom fit to your body shape and type, including back style and cushions.
    12. Insurance doesn't pay for those colored spokes and light up wheels-or for purple metal on your chair
    13. Handlebars aren't on wheelchairs so other people can lean on them.
    14. Also, just because there are handlebars on your chair, that doesn't mean we need help being pushed.
    15. When taking a trip that requires using an airport, add on at least one hour, because you're the first one on the plane and the last one off.  That's not including the time needed to request an aisle chair, the transfer involved, and waiting for your chair to come back out of the baggage hold.


      Kevin Rak said...

      About #15: Melanie has a collapsible chair, which means the airlines can sometimes store it in the cabin (there is usually a closet near the front). Chris, that won't really be an option for you because of your chair's size, but Dan, it's something to consider.

      Haddayr said...

      Insurance doesn't pay for those colored spokes and light up wheels-or for purple metal on your chair

      Mine did. I was given a choice of whatever color frame I wanted, and I have red tires with yellow spokes. I didn't have to pay extra; there were just a variety of color options.

      Daniel said...

      Haddayr, I'm officially jealous! Maybe it depends on the company that makes the wheelchair? Back in the day, I could pick which color Quickie I wanted (I normally chose candy apple red), but since switching to TiLite, I've been stuck on the normal silver. And yeah, I've never had an option on spokes!

      Kevin, unfortunately my chair doesn't collapse, so we have no choice but to put it underneath with all the baggage. Once, though, on a really empty flight, they let me take the wheels off and tuck it into the first row of seats which were empty.