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EDGENIE: While we know in terms of helping educate the general public, it really helps to put a face to something to help people identify, that's impossible within our deaf-blind community. Because there isn't
a typical portrait of someone who is deaf-blind. Deaf-blindness is incredibly diverse. It's one of the most diverse disabilities out there. Because deaf-blindness is so rare and families are usually the only ones within their community who know the most about deaf-blindness, specifically as it relates to their child, they are constantly put in the position of having to help educate others about deaf-blindness. And about their children. And this goes across the board. It means educating medical professionals about deaf-blindness and the medical issues that need to be addressed. It's helping educate the educators about deaf-blindness and the educational strategies that might work best for their child.
TINA: I was a teacher of students with visual impairments for 30 years before I had that first child with deaf-blindness. And what I didn't know about a child with deaf-blindness would have filled the room.
ROBBIE: The deaf-blind learning style is so unique. I don't know who said it first, but they were right. They said it's not deaf plus blind. It's deaf times blind.
LAURIE: All human crave connection.Communication, the exchange of ideas and feelings and thoughts is a way of creating connection.
DEANNA: It's very complex. And every deaf-blind person, child is totally different. But deaf-blindness is huge. It's huge.
ROBBIE: I was totally excited when OSEP asked that there be kind of a gathering of information on interveners. That they wanted to hear what the family said and what project staff said and what administrators in local districts say. That the stakeholders were all pulled together to talk about this, to me is a wonderful thing. People have been working very hard on this for a couple of decades or longer. And I think to bring our field together, we need to sit down and do a national comparing of notes on behalf of these children who are the lowest of low incidence disabilities.
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BERNADETTE: The development on these modules is an enormous project in effort and the collaboration of everyone who is part of this.
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