09 October 2014

Dwarfism Awareness info #9 – Today’s post is really more of a list than facts, but I hope that it helps to give people a new perspective and a different way of seeing the world.

I wasn’t diagnosed with pseudoachondroplasia until I was 8. I had been misdiagnosed with another form of dwarfism after I didn’t begin walking until past the age of 2, though that doctor had never told my parents that it was dwarfism. This was in the days before the Internet, so they had no way of knowing that “multiple spondylo-epiphyseal dysplasia (SED),” was a type of dwarfism. No Google or Wikipedia. It was when my case (my parents and I were along as well) was presented at a symposium that a young doctor unknowingly asked my parents: “how long have you known she was a dwarf?” The answer was: “a what?” The fact that this diagnosis came so late gave my parents little time to prepare me for what it meant to be a dwarf. In fact, that was the year I stopped growing, and I was already a good deal shorter than my friends. I’m still about the height of the average 6-year-old.

Anyway, one of the things that my parents instilled in me is that this world was not made for me and that I was going to have to learn to get along on my own. In the days before ADA, there were no accessibility laws or equal opportunities. They taught me I had to make my own opportunities. They made me learn to navigate the “tall” world on my own. I thought this was extremely mean at the time, but now I realize how much I learned from the experience. Thanks, mom and dad.

One of the most vivid memories I have of my parents trying to teach me to control my environment, instead of letting it control me, was getting a glass of water. This meant that I had to: 1) drag a chair to the counter; 2) climb on the chair; 3) climb on counter to get glass; 4) climb down; 5) drag chair to fridge (no ice/water dispensers in those days); 6) climb up to get ice; 7) climb down; 8) drag chair to sink; 9) climb on chair to get water; 10) climb down. I was so mad that it took me 10 minutes to do what it took a “normal” person 2 minutes to do, without any thought. It made me so mad at them, but I am so glad they persisted through my angry words.

Any dwarf can tell you that climbing is our special talent. Unfortunately, as my body gets worse, climbing gets more difficult, but I can be very creative! I once used a barrette (yay 90s big barrettes!) to reach a button to get me out of an ATM vestibule that was locked on the weekends (card access in/button out).

So, with this in mind, this is a (non-exhaustive) list of things I have difficulty reaching:

1) Public sinks. Yes, even the handicapped ones. My reach is very short, as my arms don’t straighten.
2) Handicapped toilets. Ironic, no? It’s like olympic catapulting in there: way too high. Yet, I use that stall because Max can’t fit in a regular stall with me. Not all disabilities are created equal! (My favorite public restroom in Indy is at the Children’s Museum because they have short toilets for kids. Awesome!).
3) Light switches in old houses.
4) My own kitchen sink.
5) Sinks in hotel rooms.
6) Beds in hotel rooms.
7) Safety locks in hotel rooms (unless it’s a handicapped room).
8) Lots of curtains in hotel rooms are very difficult to open and close because of how heavy they are. They are mean to be pulled up higher and don’t glide easily when pulling from way down here!
9) Credit card parking meters. Can’t see the numbers, so I have no idea what I’ve paid for. Eeek!
10) Credit card readers at many gas stations. I have to climb on the curby part, which is probably not so safe in the ice, but I do it anyway. I have a special trick for getting the stupid card in and out quickly. What a pain!
11) Most anything I actually WANT in the grocery store. I’m good at knocking things off the shelf. Haven’t been hit in the head by a can yet!
12) Lids, straws, condiments, plasticware etc. at places like Subway or Chipotle.
13) Most buffet-style food. By the way, the sneeze guard wouldn’t keep out my sneeze. Just sayin’.
14) High counters at banks or other such places.
15) High barista counters at cafes. Sometimes, they plain just don’t see me and I have to get their attention.
16) Deli counters, or anything behind glass like that. I can’t hear them, and they can’t hear me.
17) The open hatch on my Prius. I had a cord installed to pull it down.
18) Bar-type stools. Any time a server leads me to one of those high tables, I laugh. I have this way of using two stools to climb up. I call it “mountain climbing.” I avoid this whenever I can, as those things are apt to topple. When a restaurant only has those types of tables, I get angry. You can bet they’ll be hearing from me about ADA.
19) Self check-out screens at the supermarket. I can scan things, but good luck if I make a mistake or like to pay.
20) The whiteboards on my campus. I can pretty much write on the bottom 1/5th of the board. Awesome.
21) Any sort of paper (advertisement or ticket) left on my windshield. Hey, at least I could say I couldn’t reach it and the ticket blew off on the way home.
22) Basically anything taller than 4′, which is a lot of things in this world.

Ok, that’s it. I’m done. I’m sure I’ll think of 22 more things as soon as I hit “post,” but you get the point.

3 thoughts on “09 October 2014

  1. Hi, my husband has Pseudoachondroplasia as well and has trouble reaching the hatch on our Mazda. How did you go about adding a cord to the hatch? Is it something that you added yourself or did a mechanic at it on? Ours has no handle on the inside to add it to.

    Like

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