Thursday, March 29, 2007

Disability Soapbox

I don't know if this would apply to the deaf community but I would hope that it will give some of you some enlightment how to work with disabled people who may be deaf or hearing.
Now at some requests due to legal issues, I am not going to tell about what happened to me and what caused my permanent/temporary disabilities. When I get the ok, I will write it in a future article but not now. What I would like to talk about what I experienced AFTER I got out of the Spalding rehabitilational hospital.
I had two casts on broken legs (yeah, both), a neck collar and a neck artery clot. Spalding was wonderful. They provided interpreters for physical therapy or meetings with doctors or advocates.

What I WANT to talk about is what I have experienced as a dual disabled person, being deaf AND temporarily disabled in other words, I wasn't able to walk for a long long time. Even now I am using a cane. The injuries left too much damage that one cannot heal "just in a year or less." I found that I had to rely on people to help me go to bathroom, just for a piss or for a sponge bath, to help me get dressed and/or to help me get things I needed (such as food, books, DVDs, stuff to keep me busy.) Now if you think that sounds "relaxing and wonderfully lazy," I am telling you now, it WASN'T. By just a month, I was going nuts. I was bored out of my mind. I don't know but maybe it was because I don't LIKE watching television, I don't LIKE sitting around and doing nothing. Before the accident, I was very active in the community and in my personal life. I went back to college earlier than what folks expected. Yes, it meant that I had to go around in a wheelchair on the campus. I didn't mind that. Little I knew what was waiting for me!

Going around in a wheelchair was more challenging physically, mentally AND emotionally. I discovered personally that folks in wheelchairs are MORE invisible than I imagined. It's like the folks out there are saying to themselves, "don't see that woman in the wheelchair, let me get out of that way, I don't want her to brush by me." "If I don't meet her eyes, she'd not ask me for help." "Oh, how awful for her! She is miserable, I know!" I could go on but you get the idea.... There were a lot of folks that'd not even look at me even when I wheeled by; there were a lot of folks who'd LOOK at me as if I was a freak. Sometimes there were folks who thought to help me WITHOUT asking me if I needed help. I got furious with a man who tried to push me (in my wheelchair); it startled me so bad because I was pushing myself, and suddenly the wheelchair picked up speed than I was used to so I immediately knew someone was behind me, pushing me. I slammed down the brakes and he almost flipped over my chair/body. I had to twist my upper body to tell him "thanks, but no thanks!" Mind you, I wouldn't MIND getting help but I feel that one SHOULD ask "do you need help?"

I spoke with many folks in wheelchairs on campus (since now I were at "their eye levels") and they expressed that same thought; to ASK them, instead of pushing help upon them! I also found out that being in a wheelchair can be also hazardous. Twice I had fallen out of the wheelchair because I was too close to the curb (because some students wouldn't make space for me.) One basement classroom was moved to the main floor right away once the professor found out that I was in a wheelchair. Seems that if there was a fire, there'd be no chance for me to get out of the building timely!

Then I got a motorized scooter. The interpeters started to joke that the cops should ticket me for speeding! (20mph isn't so bad but hey, better that than going slow!) Once or twice, I did almost run over someone at the corner because we didn't see each other coming up the corner! But the motorized scooter was much BIGGER than the wheelchair and it caused obstacles, such as not fitting even in HANDICAPPED restrooms or classroom doors! I had to ask for an interpreter or a student to help me hobble into a toilet section or the classroom, leaving the scooter out in the hall (thankfully it was a scooter that can be locked up, like a car.) But it also made me realize two things:

1) Me being deaf AND using a scooter/wheelchair, if there's no interpreter, how could I go down stairs in fire emergencies?

2) Same thing, what if I got stuck somewhere if the handicap van doesn't show up? How do I call someone for help? (that time I didn't have a pager.)

I had encountered both situations and it was very scary. In the fire situation, two guys were nice enough to help carry me down but I had to leave the scooter up there in the third floor. Twice, the handicap van didn't show up at 9pm as it were supposed to come. The first one, the buildings were all closed. The last evening class professor noticed I was stuck, he was nice enough to call the handicap van for me and stayed with me 'til the van showed up. The second time, I didn't have that luck! I had to wait in anxiety and had tears in my eyes 'til a janitor showed up at 945pm and spotted me. He called cops and called the handicap van. Finally a van showed up at 1030pm.

By the time I got to use the crutches, I had gotten used to the "invisibility" of being a disabled person. Now I found out that one using crutches are more dangerous than I expected! There are a lot of things out there that can easily trip someone with crutches! An excited dog, some students playing frisbee, someone pushing a chair out and not seeing me coming, the "rush hour" of students between classes as well as puddles in restrooms, ice on sidewalks and mud in the parking lots. Dangers! It was only when I get to sit, I'd release a long and exhausted sigh in relief that I'm safe until it's time to encounter the obstacles again an hour or so later!
Now I am using a cane and it's not so bad, thro I do have to deal with an excited dog, ice on sidewalks or extreme winds now and then. I am even thankful that I graduated last semester so I'd not have to deal with extra obstacles!

Nevertheless, all that experiences had taught me many things. I have better respect for people in wheelchairs- they have to deal with obstacles, even in areas that are NOT handicapped-accessed. They prefer that we see them as people, not "things". I have even got LOOKS from parents with kids as "don't come close, I don't want my kid to get what you get!"
I learned that disabled people don't WANT pity or even sympathy. We deserve dignity and respect. If I could have a dime for everytime I heard "I'm so sorry!" "Must be awful for you!" "You have the right to be sad!" "I know exactly how you feel," trust me, I'd be a multibillionaire by now! DON'T PRESUME to KNOW how we feel, think or experience!!! If you want to know how to interact with disabled folks, ASK them, talk with them NORMALLY and don't treat them "differently."

So, the bottom line is.... it doesn't matter if you're deaf or hearing- just please...Treat the folks in wheelchairs, crutches, canes or having physical or mental disabilities as if you'd WANT to be treated. Respect them as you'd WANT to be respected. ASK them, instead of presuming they need help!
okay..now I'd need help getting off the soapbox here, please?

5 comments:

Anonymous said...

Yes, Jules You are right about the RESPECT. Many of us usually are able to do ourselves unless asking for an assistance. They know what is best for themelves.

Depending severity, the communication is an issue where many of deaf persons with cerebral palsy have difficulty in signing and may be difficult to be understood. Also many have difficulty in handwriting, doing in daily chores and others. But many can do like everyone else does, like driving, cooking, attending colleges/universities, and having jobs.

However, learn to meet and take time to talk with us. We the people with cerebral palsy are like everyone else with a respect. You will find NO DIFFERENCE between us.

The article you wrote is well-pointed.

Mark Hill, Vice President
Cerebral Palsy and Deaf Organization

Anonymous said...

Thanks for the useful tips for the rest of us in your blog...we can better respond to those having mobility disabilities.

I'm sorry you went through those stupid and unnecessary difficulties like being left behind or having your transport not show up...INEXCUSABLE. Those should be reported and demands made to insure that they not happen again.

Thankfully you're on the road to recovery and I hope it is quick. God bless.

Anonymous said...

Well-written article...It is bravery of you to share your experiences with the community. Unfortunately, we deal with ignorants on daily basis and it is our job to educate them if they are willing to listen to us. If they do not, then don't waste time and energy with them.

Anonymous said...

Very thoughtful post. Thanks for sharing this with the rest of us. I'm glad you're progressing back to the use of your legs, albeit slowly. Best of luck as you continue healing!

Smudge said...

Thanks for sharing. This is a more common problem than people think, and I feel it's all down to lack of education. People are scared of what they don't know. A favourite one-liner (I don't often use it!) is 'Why are you treating me like that? I wasn't born deaf either!'
Best of luck.
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