Deaf Community Accountability To the Deafblind

March 17, 2013

Deaf Community Accountability:

You know I grew up immersed in Deaf culture, right? Like, I boycotted oralism at age 3 and dove right in sign language when my hearing parents introduced me to Sesame Street’s Linda Bove and her brilliance? That my hearing parents learned sign language for themselves so that they could communicate with me every day for the rest of my life than trying to force the voice on me? That I went to a Deaf school from age five til I was nineteen, and attended a Deaf liberal arts university of the Deaf for seven years? That I am brilliant in my own sign language and love learning international sign languages?
What part of me isn’t DEAF? Tell me.

Because once it was revealed I had Usher Syndrome – ya know, that tunnel vision thingy that robs some Deaf people of their peripheral vision over the years and eventually becoming totally, like, BLIND – that things changed? That I wasn’t normal anymore in the Deaf community? That rules would be imposed upon a young Usher girl that since her eyes were “bad” she was not allowed to partici[pate in sports? Hearing blind organizations brainwashed so many schools that eventually led to my isolation and anger about my “secret” eye disease? Having people pity me so much to the point that I had no real social interactions beyond nighttime or in clubs where strobe lights flashed and university students danced and chatted on with their perfect 20/20 sight?

Of course acceptance with high school and university students did not count. Raging puberty and elitism raged on. I tried not to take it personal, you know. But for so long, I never felt accepted, or normal, within the Deaf community I WAS BORN INTO.

Nightmares plagued me in my early 20s. I tossed and turned every night, my body sweating and I felt myself tremble, after seeing vivid visuals of sitting in a corner, alone, and everyone who was sighted would stand around me and treat me like the plague.

Only that was real.

I recall one fall semester at Gallaudet, when I had come back after one semester of “Leave of Absence – LOA” for studying Braille, cane training and Tactile lessons. I was so nervous the first few weeks when I roamed campus with my cane and people GAWKED at me. They were shocked, behooved that I had suddenly owned a cane – even in their minds the suspicion I had Ushers had floated around – but it was like a huge slap in the face for them. But they never came to me and discussed it. So I thought, maybe, they were OK with it. 
Was I wrong.

Homecoming 2005 that very fall. I was sitting in a corner of the Homecoming Ball watching rowdy, drunk college students gyrating it on and bellowing out what a great time they were having. I had futilely attempted to tactile with several Deaf people. Their reactions?
“You’re such a flirt. Touching me like that on the hand. (slaps it) you’re so funny”
“That’s awkward. Why are you grasping my hand? (puts it aside)”
“I know you’ve liked me for a while, but I think it’s time I let you know I’m not interested in you”
“Um… (hand stays still)”
“Oh…. you can’t SEE. Ohhh ok, what you need is HELP. (Coco is watching this person’s expression in dim light and the person looks PANICKED)… oh ok.. oh shit… help… anyone? this D-E-A-F-B-L-I-N-D person needs H-E-L-P.. come here and rescue me… yeah.. thanks.. Oh I forgot your hand is still on my hand.. oh my god you understood what I said.. oh shit… (zooooom)”

This is after I have told them that I am now using TACTILE WITH SIGN LANGUAGE because I cannot see in the night time. And they said these things.

Not late into the night, just before I contemplated just blowing off this superficial, hyped event where people were so, so ignorant and retreat to my “Batcave” at the dormitory, I was greeted by two old friends from Gallaudet who hailed from Louisiana, one of the highest populated states in the United States of America with Usher Syndrome and various blind-Deaf people. 

Tate and Sarah Tullier came up to me, greeted hello in front of me and I did not notice them. They noticed my cane and Tate took my hand and tactiled with me. Shocked, I asked ‘Who are you’?
Tate stated his name, so did Sarah in tactile.
I was overwhelmed and asked how they ‘just knew’ to use tactile? Louisiana. Simple as that. I had the greatest conversation with them that night and it boosted my self esteem. They were only, like, 1% of the Deaf community worldwide who KNEW how to socialize and work with Deafblind people.

From there on, I kept pondering the question: How did I go from a very involved Deaf child who burst with love for sign language to someone who FEARED the Deaf community? That one day I would look at the Deaf community and realize that a) there were almost no Deafblind people truly INTEGRATED with the Deaf community; and b) that the Deaf community acted like Deafblind people weren’t part of their community? That we were :DIFFERENT” from them that we did not get invited to their events, deserved the same rights to top interpreters like they did, get to attend Deaf schools but get deferred to hearing blind schools, get shunned to the point where there almost is a guaranteed spot for us in the corner at Deaf events, that tactile was a ‘DIFFERENT NOTION’ of sign language that it was so ALIEN it did not belong in the Deaf community, and that Deaf organizations and services mostly would NOT KNOW HOW to communicate, deal, help, socialize and work WITH DEAFBLIND PEOPLE?

I know many of the Deafblind people in America, Europe and elsewhere know sign language, probably have the same background as I do and feel the same way I do…. Maybe some of them lashed out in anger and frustration but they or anyone did not know what to do, or what we were saying… or the government just doesn’t give a shit about the potential of accessibility and services that we deserve.

The first step in recognizing that there must be progress in the Deafblind community is acknowledging that many Deafblind people are DEAF. Deaf, as in part of the Deaf community. Deaf culturalized. Every part of their bodies and minds and souls are Deaf. Just that their eyes are in any level damaged, unable to see at all or with some limited degree of vision.

I don’t want future generations of Deafblind people to feel and “see” what I have in the past years: being in the middle of a legion of Deaf people, beautiful intricate visual and bold sign language flurrying in the air, stories flowing through hands from Deaf person to Deaf person and stopping short of sharing it with me because they know I cannot ‘see’ and they don’t know how to share it with me – and the pain of seeing that story leave with that person in search of a sighted person, knowing that either they are acting elite and ignorant, or truly not knowing what to do or say to a Deafblind person. And now, as I type this, I may add – looking at them with that wishful thinking that they would grace the BEAUTY of Pro-Tactile and INTEGRATING Deafblind people within their community.

Any way you look at it – if we’re born blind and Deaf, acquired Deafblind, Deaf with Usher Syndrome or any other visual impairments (I could name over twenty, mind you) or Deaf and later blind – we are still a large part of the Deaf community. Like Deaf people who are hard of hearing, with cochlear implants, can speak well, went to mainstream school, Hearing parents, later deafened, culturally Deaf hearing people… oh god the possibilities are VAST. We are a large, vastly large, BLENDED community around the world. Yep, even those who lack the very SENSE that most Deaf fear of losing: SIGHT. 

When you look at me, I want you to recognize I am Deaf. Many, many Deafblind people are DEAF. 

I think it’s time that the Deaf community learned about accountability – towards its very members – grassroots, women, men, the educated, around the world, the blind, the DeafPlus, et cetera – and truly learned how to INTEGRATE that into their livelihoods.

Because you might as well get used to me butting into your lives with my lovely hands tactiling yours in FORM OF COMMUNICATION using the very COMMON method: SIGN LANGUAGE. Any sign language around thw world. That can be said for others, however, this opinion article is based on my experiences and views being an international lecturer meeting hundreds if not thousands of Deafblind people around the world who say that they grew up Deaf, but now that they’re Deafblind, they don’t feel part of the Deaf community anymore.

My answer to that?

It takes two sides to come HALF WAY to communicate.
The Deafblind people have to come halfway and educate the others how to communicate with them;
The Deaf people have to come halfway to learn how to support them, how to integrate them within the Deaf community, to ensure that rejection is not a verb in anyone’s language.

Heck, even to this day, I still struggle with rejection from several Deaf people, but I take it in stride. If they’re willing to come halfway and learn, I’ll let them in. If they act snobby, elitist or afraid to the point where they refuse to meet me halfway, I LET THEM GO.

Now, what say you?

I love being Deaf. AND Deafblind. Do me a favor. Watch the Pro-Tactile vlogs on www.youtube.com/protactile and my Deafblind vlogs at www.youtube.com/tactiletheworldand keep an eye out for many Deafblind vlogs and blogs – most especially keep your mind open when a Deafblind friend wants to talk to you or needs you to listen to them.

Tactile love.
Coco xx