September 10

I feel like since it's September and Spinal Cord awareness month, I need to do my part and try to educate people a little bit. Ive always studied biology in school, am in the medical profession, and have a nurse as a mother, but I don't really recall ever hearing the term "spinal cord injury." I mean, I knew what paralysis was and even knew that quadraplegic meant paralysis (or impairment) in four limbs versus paraplegia, which is impairment in two. But this last year has taught me that there's a whole different world out there with people of different disabilities, or like I'd rather say, adapt-abilities. People with all different stories and limitations. People that have given up and people that won't take "no" as an answer. 

You know, a few months (actually, almost 6 months) ago, Ali Stroker, a singer and actress that lives in NYC came to KKI to talk to the patients and families. She's a girl around my age that has been in a wheelchair and paraplegic her whole life because she was in a car accident as a really small child. She's been on Glee and in different Broadway productions, but I had never heard of her before. She was the first to graduate from NYU's theater department in a wheelchair and is one of the only wheelchair actresses. (And she's a big advocate of people with different abilities actually acting out those roles, not just anyone pretending to be in a wheelchair, etc.)

She talked to the audience with a lot of animation and a very big attitude, making a point of telling people that the chair was her version of normal. She talked about how offended she'd get if people asked when she was getting out of her chair or what happened. People even go as far to tell her she's "too pretty" to be in a wheelchair. She came across really defensive and accusatory and I remember wondering what the heck made her that way. Well, it didn't take too long before I figured it out. I'm not exaggerating when I say it's an everyday occurrence that people go out of their way to ask me how I'm doing...and I don't mean that it's a simple "how ya doing?" It's more like a "how are you doing because I noticed that wheelchair you're in?" All the time I have people ask "what happened" or "how long do you have to be in that?" I've had people say "did you get in an accident?" And I just smile and say "no, I got meningitis." It's the simplest answer and usually people just drop it, but only after they ask "are you getting better?" And I reply with "well, this time last year, I was paralyzed from the nose down and on a ventilator, so I think in doing much better." I've perfected the answer and have even learned to smile and laugh a little. I had one older woman say "isn't it awful to have to depend on something like that?" Then they always try to compare it to a broken foot or a hip surgery, like that's even remotely comparable. But I just smile and remind myself that people mean well. Some people just don't know what to say and I guess saying something is a better alternative to the stares I get everywhere I go. 

But it really makes me think...how do people handle these conversations when they aren't getting any better? Or if this is how they've been their whole lives? Like it's a totally normal thing, so how do they deal with people asking what's wrong when really nothing is "wrong." I've learned to deal with these situations and find hope because I'm constantly improving, but what if I weren't? How would you deal with these daily reminders from strangers that nothing is going to change? You wouldn't believe how bold some people are. My best advice is to treat everyone and anyone normal. Just smile. Be nice. Be polite. Don't make a big deal out of saying "do you need help?" Or draw unnecessary attention to someone unless you see them obviously struggling. Otherwise, people will ask for help. Trust me. It's a little degrading when people are always asking if you need help or acting like you can't do simple things by yourself. Most people will ask for help if they need it. If someone in a wheelchair drops their wallet and the contents fly all over the floor, then yes, a helping hand is appreciated. But if someone is getting in or out of their car, you don't need to ask if they need help. Chances are, they do that every day...several times a day.. and that's a little insulting that you don't think they can do it. 

But really, the biggest thing you can do is to just act the same as you do with any other human interaction. Just think about that next time you're around someone with a disability of any kind. We all have some sort of disability or will at some point in time, just remember that.