Brian Clark And that’s just some of the folks who will be speaking at the Badass Conference on Thursday, January 26 and Friday, January 27 from 1 to 4 p.m. EST. Everyone is donating their time and services, including SpeechText Access, a brand new company that is providing captioned access for the conference. Bill Graham, founder of ALDA, put this access together. SpeechText Access is a company that trains people with disabilities and veterans to provide captioned access. Now keep in mind, the captioners are all new to this process and they’re donating their time, so we expect some blips along the way.   But it’s a start, and they’re blazing a new path in webinar access.
badass (bad · ass) n., pl -es1. Someone who lives life free of any excuses they could make, no matter how legitimate those excuses may appear to be. 2. A person who doesn’t say “I can’t” even if everyone else is saying it. 3. A person who defines him- or herself by accomplishments, not limitations. 4. A person who realizes that there is always another way, and that almost nothing is impossible.
It hit me like a ton of bricks this week when the school counselor remarked, “This is the last IEP meeting for David.”  I looked at my son sitting next to me. How did the time fly by so fast? He was a little toddler when Joe and I sat in on his first IEP meeting. David had just turned three and was diagnosed with a profound hearing loss just a short time before that. I had attended many other IEP meetings as an advocate for other families, but it was a whole new ballgame to sit in the IEP meeting as a parent.
One of the hardest things for me to do was to put him on the bus for a 45-minute ride to school.  It was hard to trust someone else to drive my child, hard to trust someone else to care for him and protect him. I didn’t like the bus driver, a young man who seemed distracted. My gut feeling kept telling me that something was wrong. A few days later, I went to get David off the bus and spied a half-smoked cigarette on the floor.  That was the last time that bus driver picked up my kid and I requested an aide on the bus after that.
David attended a school with a deaf program for three years. In kindergarten, the supervisor came up to me and told me that they felt the best placement for David would be in his home school district. I struggled with that view, because I grew up solo in the mainstream– I was the only kid with hearing loss all the way up until I met Shawn Haines in high school. Then it was solo and a friend. I didn’t want that for my kid. I wanted to make sure he grew up with deaf and hard of hearing peers. So at first, I balked at the suggestion. Joe and I had days and days of discussion, wrestling with the decision. Should we fight to keep him in the deaf program or should we try the mainstream option?
Finally, we came to the conclusion that we would give the mainstream option a try, with the intention of putting him back in the deaf program if it didn’t work out. From day one, I was determined to make sure he had a different experience than what I went through growing up.  Our subdivision had built a brand new elementary school right across the street from our house and it was just about to open up. I went in and introduced myself to the principal, Randy Vanwaning. That turned out to be one of the best moves, because Mrs. Vanwaning stayed on our side throughout the whole elementary school experience.
There’s a saying that I learned at a MOPS (Mothers of Preschoolers) conference years ago: “Bloom where you are planted.” Once we decided that we were going to mainstream the kids, we kept that philosophy with us. We made the best out of it. I volunteered at the school and in the school library so that I could get to know the staff and the teachers. I went into class and read books to the students using sign and voice. I became involved with local playgroups and neighbors. The school hired an interpreter whose parents are deaf. Mrs. Mac is still interpreting today for Steven. Mrs. Mac started an ASL club at the school. The music teacher embraced sign in every single concert that the school put on and Mrs. Mac volunteered her time to teach the students one song per concert. Many of the students signed the school song at assemblies.
There were many experiences along the way that were challenging and it wasn’t always easy. I teamed up with Janet Des Georges to write The Myth of the Perfect IEP as a result of those challenges. I often reminded myself that it would have been the same in any environment– it’s the nature of the journey and of life.  There were times when we questioned our decisions and explored options and considered changes. One of the most difficult IEP meetings we ever had was David’s transition to high school. A staff member felt strongly that we should keep him in the home district. We felt differently– we wanted David at Hinsdale South, where he would have deaf and hard of hearing peers as well as a mainstreamed education. We couldn’t come to an agreement at that meeting. That was a meeting where tears were shed– I’ve had a few of them over the years with the three kids for different reasons.  We worked out that agreement and it paved the way for a smooth transition for Lauren as well.
At David’s last IEP meeting, I sat and thought about all of this as I watched him talk about his experience at the “Explore Your Future” camp to the VR counselor and the district representative. I sat in awe as I watched him share his views of what he wanted for his future– this little boy of mine has turned into a young man– when did that happen?  I thought back to preschool, and how he cried during the Christmas show that the teachers put on.  The teachers tried to encourage him to say his lines, but all he did was sit in his chair and cry while the other kids took turns saying and signing their lines. I look back at that time and laugh, because I have a son who can get up on stage and put on a show now. Go figure.
For a long time, I was the parent teaching the child–guiding David through life and sharing what I wanted him to know. Lately, I’ve been aware of how much the roles have shifted, I’m learning things from my son. When we head to the gym together, he teaches me things about muscle development and he becomes my coach as he runs me through drills. “Come on Mom, you have to do one more set”– which sounds a lot like the stuff I tell him at home: “Clean the bathroom and sweep the living room.” Just yesterday, he made a stir-fry dinner while I was glued to the computer and I was surprised at how delicious it was. There he was, sharing his newly-made recipe with me and teaching me how to make a better stir-fry.
I mentor families who are just starting out on the journey of raising deaf and hard of hearing kids and the beginning of the journey always seems so overwhelming, so impossible, so challenging. “Hang on to every bit of time that you have with your child,” I tell them.
Because before you know it, in the blink of an eye, all of a sudden, the last IEP meeting arrives and you wonder how it went by so fast.
It’s funny, I don’t consider myself disabled– that is, on most days. Then every now and then, life will knock me upside the head and remind me that I can’t access the world sometimes.
I was born with hearing in the so-called “normal” range. I know I started losing some hearing when I was in kindergarten, because I remember climbing into bed and asking Dad to repeat the story of Scamp, the scraggly little dog that went on adventures all over town. All of a sudden, I was missing bits and pieces of the story. I was outfitted with a single hearing aid at the age of nine, but the contraption often ended up on a shelf after school and disappeared during the summer. I got by with lipreading and some impressive social bluffing skills.   When I was nineteen, I went from hard of hearing to deaf in an instant– I fell while barefooting and climbed into the boat deaf.
Sometimes it’s hard for people to believe me when I say that becoming deaf was the best thing that ever happened to me. The bluffing skills went to the wayside and I picked up American Sign Language. I worked at a Center for Independent Living and met people with disabilities from all over. The very best thing that I learned was this: Attitude is everything.
When we have an attitude of acceptance, equality and access, then we see the whole person, instead of just a disability.  Jo Waldron says it best when she says, “Attitude is the worst barrier of all.”
I generally find that most people have an open attitude when they meet me and we have to do a communication dance– I have to figure out how to lipread them and they have to figure out how to slow down and face me. Once we get that dance coordinated, access usually follows. The same thing happens with websites– sometimes I will ask for a transcript for a video or captions and folks are usually willing to follow up with some kind of access. Eventually… someday… I hope for full internet access. The passage of H.R. 3101 and S. 3304 would enable a step toward this access.
I recently discovered that NBC now has some old episodes of the Emergency series posted on their website. As a kid, I loved that show, even though I had to lipread my way through it. This was before the days of captioning on TV. And today, I feel like I’m right back in the 70s– because there’s no captioning on the TV episodes that are displayed on the web.
Representative Ed Markey introduced the Twenty-first Century Communications and Video Accessibility Act of 2009on June 26, 2009. Quite simply, the bill has this as the goal: “To ensure that individuals with disabilities have access to emerging Internet Protocol-based communication and video programming technologies in the 21st century.”
In other words, it means that if I want to see old episodes of The Tonight Show or waste time watching Deal or No Deal– that I would have access to those episodes just like everyone else.
Isn’t 30 years a long time to wait for captions on the web?
Keep in mind, this doesn’t apply to user-generated content. So if you toss a video on YouTube, no one is going to make you caption it. But I sure would appreciate the access if you decided to make your content accessible. And something else to think about: someday your own hearing might go south and you’d appreciate a captioned web.
The Coalition of Organizations for Accessible Technology has a petition to sign. Jamie Berke has a blog with tons of info: Caption Action 2. Over on Facebook, a group has gathered to push the grassroots effort and get this bill passed. Won’t you come and join us?
I know you’re probably rolling your eyes and thinking, “Not another bill, Karen.” But here’s the deal–if you contact your Senatorsand ask them to start a similar bill and contact your Representatives to support H.R. 3101 and help me get this passed and into the law books, I promise I won’t bother you again for a while.
I’ll be too busy catching up on those Emergency episodes.
A few nights ago, the hubby was flipping through channels and he came across Stunt Junkies, a program on the Discovery channel. The episode featured Scott Ellis, who was attempting to break a waterskiing jump record by jumping over more than fourteen boats.
As I watched Scott break the record by jumping over a total of nineteen boats, I started thinking back to my own waterskiing days on Christie Lake. I had always dreamed of skiing in shows such as the ones held at Tommy Barlett’s or Cypress Gardens but I didn’t have the guts to follow the dreams.
The summer that I turned sixteen, I decided that I would learn how to barefoot–to waterski on my own bare feet. At first, I tried using a waterski and kicking off the ski, but I found myself hitting the water face first. After too many face slams, I decided there had to be a better way. So thumbed through the pages of a barefooting book and learned about the “kneeboard start.” I dragged my mom to a local boat shop and we purchased a kneeboard.
After a couple of days of trying, I finally planted my feet in the water and stood up. The kneeboard fell away and I suddenly found myself barefooting. I didn’t get very far, perhaps a few hundred feet. As I climbed into the boat, I learned that my friend Michele had the throttle wide open and the boat was moving at 39 mph instead of the 33 mph that we were aiming for. No wonder my feet were burning on such a short run.
For the next three years after that, I waterskied and barefooted every chance that I could. I often barefooted with the other guys on the lake, competing to see who could make it all the way around the lake. One of the guys taught me to do a deepwater start which involved wrapping my feet around the rope, gliding on my back and then getting up on my bare feet.
I have to thank my parents for all the gas they bought– some days we skied up to eight times a day.
I’m now in my early forties and I haven’t barefooted in several years. My only consolation is that no other girl/woman on Christie Lake has successfully barefooted, so I still hold the title of the sole woman barefooter. My goal is to get back into barefooting– especially after seeing Scott Ellis jump a couple of boats. He’s got the same amount of gray hair that I do.
But for some real inspiration, check out Banana George–he’s 91 years old and still footin!
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and learned about the “kneeboard start.” I dragged my mom to a local boat shop and we purchased a kneeboard.
