Kansas SB 444: My Testimony

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Testimony for Public Hearing

Kansas Senate, Education Committee

February 17, 2016

SB No. 444 (Committee) – On establishing an assessment program for deaf and hard of hearing children in Kansas

Dear Education Committee members,

My name is Tara Schupner Congdon, and I am a product of the preK-12 deaf education system in Kansas.

I write today to urge you to support SB 444, establishing a statewide bilingual language assessment program for deaf and hard of hearing children in the state of Kansas. My personal experience and observations of deaf education in this state over the past 30 years leads me to wholeheartedly attest to the critical need for this program, which has the potential to advance the linguistic, educational, social, emotional, and economic well-being of all deaf and hard of hearing children in Kansas.

As a profoundly deaf bilingual child of hearing parents, I entered the Total Communication (spoken/written English + Signing Exact English, SEE) program at Santa Fe Trail Elementary School, Shawnee Mission School District. With access to comprehensive visual communication through teachers of the deaf who signed and interpreters, as well as auditory and speech therapy, while fully included in the mainstream, I rapidly surpassed age-appropriate milestones. I graduated from Shawnee Mission East High School in 2001 with a 4.6 GPA, as a Kansas Honor Scholar, AP Scholar, and National Merit Scholar. I hold bachelor’s degrees in English and Journalism from the University of Kansas and a master’s in Literature from American University, and work as manager of communications for an international behavioral and neuroscience research center in Washington, D.C.  I am a product of the Kansas deaf education system.

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A Model of Marginalization

Nyle Top ModelDeaf model Nyle DiMarco’s run on America’s Next Top Model has been a hot topic. Who doesn’t like a rugged hunk with baby blues and washboard abs? Especially one who has been such a brilliant ambassador of the deaf and hard of hearing community?

Unfortunately, being an ambassador has its pitfalls. Like being marginalized on national television.

In last week’s episode of ANTM, Devin took Nyle’s phone and consequently his primary means of accessing conversations. Nyle’s response sent a powerful message about what it feels like when one person’s ignorance cuts you off from other people.

He also gained widespread sympathy from viewers, which creates the perfect opportunity to open space for a honest discussion about the deaf experience in America. Devin’s actions gave the public an insight into a pernicious attitude among hearing people that trivializes deaf people and our communication devices. This attitude and resulting behaviors seriously impact deaf and hard of hearing people’s ability to integrate into and feel accepted in hearing communities, particularly in workplaces and social events.

Nyle is far from the only deaf person to experience this marginalization. He just happened to live it out on television, in front of millions. Hundreds of thousands of deaf people, myself included, deal with this in anonymity, every day.

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I am not your hero

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A couple weeks ago, a mother of a child with spina bifida wrote a courageous column titled “My Child With a Disability is Not My Hero,” which has been tumbling around — along with the usual gazillion other thoughts — in my brain.

Now, I’d like to say a few things.

First, I agree in many ways with Sarah Sweatt Orsborn’s perspective as a parent, and I applaud her for being brave enough to write about it so honestly. It’s an important question for parents of children with disabilities to think about. Orsborn writes, “The tendency of parents of kids with special needs and disabilities to say their kids are ‘heroes’ makes me deeply uncomfortable.” She explains that she feels this way because to call children with disabilities “heroes” amounts to demarginalizing and dehumanizing them. They’re just kids, and should be allowed to be kids first and foremost, not put up on a pedestal or given standards that may be tough to live up to.

Now, as someone who grew up and lives with a disability, I’d like to chip in my piece: a “Adult With a Disability” perspective. The idea of calling someone with disabilities a hero just because of what they have and who they are also makes me uncomfortable. Here’s why.

I was born deaf. I grew up deaf. I’m still deaf and will be deaf for the rest of my life.

But I am not a hero. My simply being born deaf or being deaf is no reason to call me a hero. It is just part of who I am. I was born that way. Are you a hero because you were born with blond hair? Are you a hero because you were born with brown eyes? Are you a hero because you were born with a talent for math or a talent for kicking a soccer ball?

I didn’t think so.

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The dreams horses are made of

Pye 14I started dreaming when I was about 5. Over the years, as that dream began to take form, it had big gentle brown eyes and a soft velvety muzzle that would nudge me for carrots and hugs. It had the spirit and courage to jump any wall, the talent to win blue ribbons, the gentleness to take care of its rider, and the patience to listen to a girl’s confidences. It would be my best friend through thick and thin, in a world where other kids were fickle and cruel and books didn’t respond to me or lean into my brushes and embraces. It would be my partner in adventures, the best of Starlight, Black Beauty, Misty, Artax, and every other fictional horse rolled up in one. It was a dream for which I begged and pleaded, worked and saved, and nurtured for 11 years before it became reality and I held it in my hands.

Last Tuesday, that dream started its usual trek up from the pasture for his dinner. But this time, he never made it. Somewhere along the corridor between the pasture gate and the stall, he laid down and his soul left his body.

The next morning, I woke up to learn that for the first time in 14 years, I no longer owned a horse. The dream I’d nourished for 25 years had died.

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Text-to-911 service available for deaf and hard of hearing in Denver

AT&T/Relay Colorado, the Colorado Commission for the Deaf and Hard of Hearing, and my business, Context inMedia, recently partnered to produce a commercial promoting a  text-to-911 service now available for deaf and hard of hearing people in Denver.

Before current technology, if an emergency happened, deaf and hard of hearing people faced serious challenges in contacting emergency services. Now, with various relay services – especially video relay – it’s much easier to call 911 using your videophone, computer, laptop, or mobile phone. However, internet or video relay often isn’t ideal in fast-paced emergency situations when you’re not at the address to which your VP/account is registered. And many deaf and hard of hearing people do not sign fluently and so cannot use video relay to call 911, and internet relay is notoriously slow.

This is where text-to-911 can help. No more chasing after hearing people, asking them to call for you. No more standing by at the scene of an accident, wishing you could do something but feeling you can’t, because you have no way to contact 911. Now, deaf people can step up and do it themselves!

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