Tuesday, April 29, 2008

Advocacy


Last night during ASL class, my teacher came up to me with a copy of last Fall's ALDA (Association of Late-Deafened Adults) newsletter. My picture was on the front. I'd forgotten I had written that article for ALDA. She had found a copy of the newsletter at her audiologist's office during an appointment last week. And she was surprised to find one of her students on the front. Though she knew I was late-deafened, we've never talked about my involvement in ALDA or HLAA or advocacy.



In truth, I'm not much involved in ALDA at all. But I know the president. She had been looking for articles on advocating for yourself, in which a deaf/HH person was successfully accommodated in a pubic situation. So I wrote about my success with getting CART for my son's graduation ceremony last spring. Because of CART I was able to read what the speakers said, and I understood the lyrics of songs the choir sang. Without it, I would have understood N-O-T-H-I-N-G. It would have been a night of sitting in a crowded auditorium wishing I could hear while others laughed at jokes and cute comments the new grads made. I had to fight a little to get CART in place, but because I did, I enjoyed my son's graduation night like everyone else around me.



Was it too much to ask? Almost every parent thinks of graduation day while their kids are growing up. I was there to send my son off to school his first day of kindergarten. I went to all the parent-teacher conferences. For years, I helped set up for PTA events, sold tickets, collected Campbell soup labels for a kick-back in school supplies to our district, and I cleaned up after school programs. I scooped ice cream for fundraisers, baked cupcakes for school parties, drove carpools of kids on field trips, made cookies for principals, had my car washed when it didn't need it for the school band or cheer leading squad. I attended meetings with school counselors and teachers to advocate for my son over the years. (He ALSO has a disability.) In return I helped in their classrooms. Of course I wanted to be a part of the graduation ceremony too. I am proud of him. He graduated with a decent GPA, and was accepted to a good university. His accommodations helped him to thrive in school. If I couldn't HEAR my son's name being called to receive his diploma, at the very least I wanted to READ it-- on CART!


When the organizer of the graduation ceremonies balked at providing CART, I told him point-blank, "Deaf people have children and pay school taxes too."


So my article went into the ALDA newsletter and I forgot about it until yesterday when my teacher brought it up to me.


The thing is I wasn't born deaf. When I was a kid I never dreamed I'd be in this position of having to fight and educate people about deafness wherever I went. I am shy. I wasn't prepared. I didn't CHOOSE this life. For years, I wondered, "WHY ME?," which is so typical for late-deafened people. Why me? It wasn't until I met other strong late-deafened advocates who educated me about ADA rights that I began to think differently.


Why NOT me?? Slowly I began to see my deafness in new ways. I have a mission to educate non-deaf people and newly deaf alike. I can help others just like me adjust to their deafness, like those who helped me when I was mired in self-doubt. When I learned my youngest son had a disability I realized my deafness had prepared me to fight for HIS rights as well.


At my last job interview, I was asked what I'm most proud of in terms of life accomplishments. My answer? Because of hearing loss I face challenges every day most people can't imagine. I am proud I've overcome, learned to adapt and that I've lived a relatively comfortable life despite those challenges. I could see they were taken aback by my honest answer. Yet, I wanted to be clear that I was "disabled" AND capable. Afterwards I thought maybe I blew it. But they hired me.

I don't want pity. I want and deserve equal access.


Advocacy at its best is working, living, playing with hearing people while proving you ARE capable!

9 comments:

Anonymous said...

Is that your son with you in that photo? What a good-lookin' boy! And I must say, his momma looks pretty hot for herself.

I'm sure you were very proud of him on his graduation day and enjoyed his day even more because you could understand a lot of what was expressed at the ceremony with CART services.

You SPOKE UP, you had a right to be there, but also had a right to understand what went on during the ceremony, as any proud parent would want to. Kudos for speaking up about communication access on a special day.

Ann_C

Kim said...

Thanks Ann,
Yup that's my baby boy-- all grown. He's a sweetie, too. He took ASL for me--before I did actually. He's the one who encouraged me to learn it. Now he can ask for money without having to repeat four times. :-)

Anonymous said...

Ah, that boy knows how to wrap you around the little finger, uh-huh!!

Ann_C

Abbie said...

Hey little lady :) You're one hot momma! :) Where can i get a copy of this article eh?!

Advocacy is something that we all have to stand up and do for ourselves, no one is going to do it for us. The more that people who can't hear make people hear us, the better we are off. :)

I'm so proud of you!

Kim said...

Abbie-- It's not like being the cover girl on the national HLAA magazine. hahaha! Honestly I'm a little embarrassed of it. It's not that well-written. It was only for the local ALDA chapter. I thought someone would edit it, but they didn't. ACK!

Valerie said...

I love your comment I don't want pity. I want and deserve equal access.

That is all any of us want. I use to think I could not ask for anything, but through the wonders of the internet I know my rights. I will tuck this info away as Jenna grows. I want to be a part of everything and that means see and hear it.

Bet your son is a heartbreaker.

So now we have two cover gals! What is next national television newsmagazine?? the news??? our own reality show??? Let the world see how deaf people really live.

Valerie

Kim said...

Hi Valerie! Yep you have the right to accommodations at all public school functions-- and THEY have to pay. Graduations were the only times I asked for anything, but I could have asked at other events, as well.

Originally I had asked for the CART to be on a big screen, but they refused that. Considering the number of grandparents in the audience I was quite sure I wouldn't have been the only person to benefit. Having my own small transcriber with a laptop was the compromise. I got what I wanted. I felt badly for all the others who couldn't hear.

It does bother me that the hall was automatically accessible to everyone in wheelchairs, people who use walkers and canes and also to blind people, while WE have to ask for accommodations months in advance, then fight to get it.

So frustrating! BUT-- the more we ask, the more people will get it.

But the point here is the more of us who request accommodations, the more familiar those in charge of organizing events will become with this process. If all of us asked everywhere we went, then people would see there's a demand for it.

Anonymous said...

Hi Kim! I am so impressed by this, and that's a wonderful photo of you and your son. :-)

I have two graduations coming up -- my daughter from 8th grade and son from high school. I had no idea I could request this. However, they are both in less than a month -- is it too late for me to ask at this point?

I also have a question -- how did it work? Did someone follow you around with a laptop, typing everything while you leaned over to watch the screen? I've never seen CART in action!

I would love to ask for this but I'm not even sure who to contact about it. Anyway, thank you for sharing this! It was really, really interesting.

Kim said...

Hi Wendi! The main thing is setting up the CART transcriber. They get booked in advance. You might be cutting it close at this point, with graduations less than a month away, but it doesn't hurt to try.

I gave my son's school over two months notice, then went out of town. They hadn't done a thing when I contacted them again with only two weeks to go.

If you present the school everything they need to set it up, and explain how it will work, then it should just be a matter of finding out where the funds come from. That part is THEIR job.

Public schools are federally funded and get money just to handle accommodations for the disabled, so there's no reason for them to balk. It's not like this comes out of the same monies they use to buy books or anything.

The graduation planner at our high school didn't even know what CART was, so I sent an email with a link to explain it and a couple phone numbers of transcribers who did this kind of work. Normally the transcribers bring their own equipment.

I also requested priority seating, mainly so the transcriber would be able to hear everything.

Further-- Your entire family should be allowed to sit with you. They shouldn't expect you to sit close all by yourself. Equal access means everyone in your family gets to sit together, just like everyone else in the auditorium.

So I sat up front with my entire family and the transcriber, who transcribed the entire ceremony. I'm not sure how the school paid for it.

I did this three times, when all three of my kids graduated high school.

Good luck,
Kim