Thursday, September 17, 2015

Invisibility of the Deaf-Blind - #ImNotInvisible Deaf-Blind Campaign

I identify myself as deaf-blind, yet I am invisible to the public because I can act like I talk, hear, and see like anybody else. I'm often asked what country I’m from because I have an European accent despite being born and raised in Michigan. People are surprised when they learn I have vision and hearing loss. 

One time, at a disability in sports awareness event in college, I wanted to do some jet skiing and kayaking they were putting on. I was informed by them only people with a disability can do the events. I stammered, saying I am deaf-blind. They were very apologetic when they learned that, they should knew known better than that because there are disabilities you can't see.

Writing this post on how deaf-blindness is invisible to the public is great timing because there is an on-going campaign on Twitter: #ImNotInvisible. This campaign is to raise awareness on how deaf-blind is its own disability, different from deaf or blind. Deaf-blind is an unique disability for several reasons. Most of us are already familiar with at least some of the issues of the deaf and the blind. At the very least, we know the deaf can't hear so give them hearing aids, and the blind can't see, so give them a guide dog.

Combining the two disabilities, however, don't necessarily mean the deaf-blind share the same issues as the deaf r the blind. It is a whole different disability altogether, and that needs to be recognized by the public. Giving them a hearing aid won't always solve the problem of communication, and a guide dog has to be specially trained to work with a deaf-blind because using the same type of training used on the dog to help the blind don't translate well for the deaf-blind.

It's true the deaf-blind shares life experiences with the deaf and blind. However, the deaf-blind has issues unique to them and the biggest one is the method of communication.

The deaf has the ability to use visual languages to communicate with others, and they miss very little of what goes on around them, but to the deaf-blind, they miss most, if not all, of the visual cues the deaf picks up.

The blind can use their auditory senses to fill in what they are missing, such as a loud crack to signify there is a thunderstorm. If there is no vibration from the storm, then the deaf-blind don't know there is a thunderstorm in their area, and if they're outside, their life could be in danger.

People, even those trained to help deaf or blind people, make the assumption that if a person is deaf-blind, then they  need help with vision or hearing— separately and not together. A lot of traditional mode of communication for one or the other will not work for a deaf-blind. A deaf-blind can't watch a signing interpreter like another deaf person or wear headphones to hear audio description in movies.

One time, a Division of Blind Service counselor sent me a sound recording device to help me in the classroom when I requested for something similar to closed captioning in the classroom, to get what the teacher is saying. The counselor did not understand the needs of the deaf-blind and assumed whatever works for the blind will also work for the deaf-blind.

 For me, the issue of being deaf-blind is different than the average deaf-blind because I have the cochlear implant and was given oral instructions instead of sign language in order that I may speak and hear. I use lip-reading to help me understand people. But, I know in time when my vision gets worse or totally blind, I won't be able to lip-read or read closed captions anymore. I may have to get a second cochlear implant to be able to continue to be a part of the Hearing world, but I may no longer enjoy watching TV.

The needs of the deaf-blind is varied and unique because of the varying loss of both vision and hearing. Some have better sight but no hearing, and others have some hearing but no sight. Which makes the deaf-blind community so unique and different from the blind or deaf.

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