Everyone knew she was brilliant, everyone knew she was a difficult professor, everyone knew she had all the 'right' and prestigious degrees after her name, and everyone was a little intimidated by her. While other professors on the small college campus were okay with students calling them by their first names, it was always Dr. E---- with her. No one ever asked if it would be okay to call her by her first name, like an unwritten law that's just the way it was. Not only was she the Chair of the Humanities department, head of the Honors Program, my Honors English Comp professor, and my academic adviser. But on top of all of that the first thing everyone saw was that she used a power wheelchair and also walked with crutches.
"Sandy do you know why Dr. E---- is in a wheelchair?" My friend asked while we were eating in the dining hall.
"Uhh no, not really. I mean there are all kinds of rumors but I dunnno the real reason."
"So what do you guys talk about? Do you talk to her about disability stuff?"
"Umm no, not at all. She helps me pick classes, makes sure I'm finishing my major on time, signs all the forms, and then I leave her office. Honestly I only ever see her once or twice a semester, just to choose classes and check-in."
I don't know how many times I had the above conversation with friends and other students on campus. Whenever they asked me if I talked with her about "disability stuff" I always got confused. I mean, should I have been talking to her about 'disability stuff'? And what exactly is disability "stuff" anyway? In my mind she was my academic adviser sooo... I only talked to her about academic advising stuff!
To be honest towards the end of my college career I did wish that I talked to Dr. E about "disability stuff." I was about to go off into the 'real world,' and felt like though I had gotten an excellent education and made incredible friends - some part of me still felt extremely underdeveloped. But she never pressed me about anything and I was too awkward to know how to bring anything up. Questions like "how do you go about finding an accessible apartment in the city?" Or "how did you get your license and afford that car?" And "Is it hard for someone who is disabled to find a job in the private sector while still keeping disability benefits?" Or "How did you go about having the school put that huge ramp right outside your office?" And "Is that a pet dog that you have or does your dog help you with things?" These and other questions lingered on my mind towards the end of my senior year, but no matter how many times we met for coffee, or met so she could write my letters of recommendations, or to talk about how my last semester was going - I just couldn't seem to get the words out of my mouth. I loved college! I loved the life, independence, the academics, my friends, and the clubs I was involved in. I don't regret any of it, except... maybe not having been as close to my academic adviser as I could have been.
I had always been like that: Forever awkward and uncertain around others with disabilities, regardless if the other person had O.I. or not. Maybe it's because my parents mainstreamed me right after preschool? Or because they raised me exactly the same as my two unaffected brothers? Or because I had just never associated with anyone with a physical disability, never mind O.I., outside of a hospital waiting room? (And even then it was usually forced by my mother...)
"Hey, she has O.I. too and she's probably also waiting for Dr. Shapiro. Why don't you go talk to her?"
"Why? That's stupid. What am I going to say to her?"
Do I say "hi, uhhh.... we have O.I. Let's be friends?" I have rehearsed that phrase so many times in my head and it just sounds dumb.
It occurred to me that up until fairly recently I didn't even SEE myself as someone who has a disability, or is disabled, or is anything other than normal. And while I still view myself as 'normal' I am beginning to understand that there is a part of me that has a different identity than the majority of society. There's an aspect of me that belongs to this whole other community that is unbelievably awe inspiring and tremendously strong. As much as my parents tried to raise me otherwise, there is something about me that is fundamentally and genetically different from my brothers. They won't ever get it, and I understand that. And while I am now proud to just begin to become a part of the O.I. / disability community, the transition is still awkward. It's like a muscle that hasn't been stretched because it has been in a cast for the past five months; except in this case I think it's a muscle that hasn't been stretched for the past two decades or so.
It's starting to feel a little less odd to use that muscle:
Last week at the mall I was weaving in and out of a crowd of tourists, a huge throng of people had sought refuge inside the mall from the heat wave. That's when I saw the wheels. They weren't just wheels, I quickly recognized their thickness and the same pale gray rubber color; then I recognized the oddly jutting shape of her Permobil C300 wheelchair. Immediately I knew she also had O.I.! Since I have the symptoms when I recognize O.I. in someone else it's like finding a matching puzzle piece: she had a large head, a tiny torso, and almost no neck to speak of. Her wheelchair was almost identical to mine except she didn't have footrests - she had no need for them as her legs didn't go past the edge of her seat. Just as she had caught my eye I had caught hers. We were on opposite sides of the kiosks selling over priced tourist gadgets; from the corner of my eye and between the spaces of legs and bodies I saw that she was unsure if she would be able to talk to me.
I went ahead a bit and thought to myself oh cool, another O.I.'er that's neat. But then remembering my experiences with Dr. E and my readers here, I slowed down and decided to pull over, seconds later she had zoomed up next to me. That's how I met F and we had a normal conversation! I didn't feel awkward and I wasn't fumbling for things to say; and while we did talk about "disability stuff" I didn't feel pressured to bring it up, and nor did I feel vulnerable talking about it in the brief conversation that we had.
Talking with others:
- If you're like me and have never met (or only met a few) people with O.I. you probably understand the bit of awkwardness that I wrote about. From what I hear, it's supposed to be a little awkward and overwhelming at first!
- Just be polite. In the situation above, F was nice enough to bring up the O.I. first. She asked "do you mind if I ask you what your disability is?" And even though, I think, we both knew that we had O.I. I thought it was considerate of her to ask anyway - it can be embarrassing to just assume
- Along those same lines you can always say "I'm not really comfortable talking about it with people I don't know really well" if you'd rather not get into everything
- Be genuine. This is just my opinion but if someone is going to talk to me or be my friend because we have the same disease, that is going to strike me as a little weird. I understand that people want to connect with others who are going through similar situations but I think that the connections can be more meaningful if you also get to know the person!
- Ultimately I have found that everyone that I have associated and communicated with (either in person or virtually) have been really understanding about where I come from, my experience with other people with O.I., and my own life experiences. So don't be afraid to say "hi" or "what's up" because if you think about it (given how rare the condition is)... it's really cool when there's someone else with O.I. in the same place at the same time as you!
