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Receiving a Gift on Deafblind Awareness Day

April 15, 2015

by Mark Dunning

I had the honor of attending Deafblind Awareness Day at the Massachusetts State House recently. I have attended many of these days and they are always amazing.  I would describe why I enjoy them so, but Carl Richardson, the State House ADA Coordinator, gives a much more eloquent description than I ever could in this video clip.

Humbled and awed, Carl said. That’s what it is. Humbled and awed. Perfect. 

A panorama shot of DeafBlind Awareness Day at the Massachusetts State House

I see my heroes everywhere on Deaf blind Awareness Day, Carl among them. Many of them are directly responsible for the hope in my life, the faith that no matter what fate awaits Bella’s vision, she will live a happy life. The feeling of community, of family, is overwhelming and the stories of success are uplifting. 

I received a gift at the event this year. Awards were presented to people who had impacted the deaf blind community. I was given a small sculpture made by a deafblind artist in Spain. It’s meant to symbolize touch and it does it perfectly. Everyone who sees it can’t help but pick it up and touch it. But that wasn’t the gift.

We were there because Bella was invited to speak, to give the perspective of a teenager with Usher syndrome, to educate the representatives about the strength, determination, and goals of a young deaf woman facing blindness. Bella has a routine now, a preparation plan for giving a speech. We write it together first, type it out word for word. Then she stands and reads a printed copy a couple of times. When she thinks she has it down, I quiz her. I just ask her questions I know she will answer in her speech, like who are you? What makes you different than the other kids at school? What is Usher syndrome? She replies with what she plans to say. 

On the ride in to Boston she wrote down notes from the printed speech. She spoke off of the notes so she wouldn’t seem like she was reading. She nailed it. I can’t count the number of people, many of them state representatives, who praised her to me. I couldn’t have been more proud. But that wasn’t the gift.

Among those in attendance was Elaine Duscharme because Elaine is always in attendance at these things. There isn’t a more respected person in the deafblind community in Massachusetts. Seemed like every speaker on the day acknowledged Elaine in some way. Elaine had a big hand in creating and maintaining the vibrant deafblind community that exists in Massachusetts.

Elaine is older now. She has completely lost her vision and communicates solely with tactile sign. I don’t think I know someone who smiles more or laughs louder than Elaine, though. She is articulate, intelligent, and has a great sense of humor. She’s a wonderful role model for Bella. And for me.

She is also someone I don’t feel I help with what I do. The treatments that would really benefit Elaine are a ways off. It is not likely that her vision will ever be fully restored. And she doesn’t need a support network. She already built an amazing one. I guess I have always felt that she means more to me than I should to her. 

Elaine presented the awards at Deafblind Awareness Day. The last she presented, the interpreter misinterpreted the pronoun. Kept referring to she and her, but the person described sounded a lot like me. When she said my name, I was stunned.

Elaine presented me with the small sculpture. Then she gave me a long hug. It was heartfelt and caring, just like Elaine, and it nearly squeezed tears out of me. I can’t help Elaine. But that didn’t matter to her. She cared about me just the same. I was humbled and awed. Of all the wonderful things I experienced at Deafblind Awareness Day, her embrace is the one I will never forget. 

That was the gift.

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