Craft fair highlights needs of deaf-blind community

Reported by Roxanne Egan-Elliott

Craig MacLean is working hard to make sure his son will grow up in a more accessible world.

MacLean’s 11-year-old son Chase lives with CAPOS syndrome, an uncommon genetic condition that affects hearing and vision, among other things. As he grows up, Chase’s hearing and vision will deteriorate until he won’t be able to rely on audio or visual cues to navigate his environment.

MacLean knows what this is like because he also has CAPOS. He is deaf-blind, meaning he has limited vision and hearing. This combination of sensory loss makes the experience and needs of a person who is deaf-blind unique from that of someone who is solely blind or deaf.

Unique needs

“We have support for blind people, interpreters for deaf people, but there’s not really any support for deaf-blind people. That’s missing,” MacLean said.

A Christmas craft fair at the River Market in New Westminster in December raised money for the Deaf-Blind Planning Committee, a group committed to advocating for the needs of the deaf-blind community. Vendors sold Christmas cards, paintings and decorations at the 22nd annual fair.

Second year students in Douglas College’s sign language interpretation program volunteered to interpret for vendors and shoppers at the fair not fluent in ASL.

Lack of support

MacLean is chair of the committee, which was created in 2012 to address the complete lack of professional intervenors for deaf-blind adults in B.C.

“Deaf-blind can’t depend on interpreters,” MacLean said. “That’s communication. It’s very indirect.”

An intervenor is a person who works with deaf-blind individuals, and acts as their eyes and ears.

Intervenors provide information about the environment that a deaf-blind individual can’t gather on their own, like explaining whether it’s sunny or cloudy outside, and describing who is in a room.

Intervenors can also use a tactile version of American Sign Language. This is especially important for individuals with very limited vision who can’t see signs. The deaf-blind individual places their hands over the intervenor’s hands while they’re signing.

Individuals feel isolated

Eddy Morten, another committee member, is also deaf-blind and said that the lack of intervenor services leaves him feeling isolated. Other committee members agreed, and added that they often feel unsafe going out in the community on their own.

Morten, who sold his handmade holiday cards at the fair, said that people often think that deaf-blind people are not intellectually capable and can’t function properly because of their disability.

The B.C. government distinguishes between deaf-blind individuals whose hearing and vision have deteriorated over time, and those who were born deaf and blind, MacLean said. Intervenor services do exist in schools for children born blind and deaf.

But for adults who have slowly lost vision and sight, intervenor support is unavailable.

The office of the B.C. Accessibility Secretariat did not respond to an interview request by deadline.

While his son ran around the craft fair, MacLean said: “Because there’s no intervenor services right now, as he grows up, he’ll be in the same situation as me, without vision or hearing, and no one to support his needs. So now I’m fighting to get this set up. To have intervenor services for the future.”

The Deaf-Blind Planning Committee will host the annual Deaf-Blind Awareness Week at River Market in June.