Are We Disabled?

Are the people that have lost sight and hearing considered disabled? Or double-disabled? Or just a thorn in normalcy?

One of the readers brought up a very good question and it’s one I have asked myself and others ever since it dawned on me that I would eventually become blind. It hadn’t dawned on me when I was 8 years old and diagnosed; it was when I was 19 and has seen the sign at a Gallaudet office: Office for Students with Disabilities. My naiveness led me to do some quick sleuthing work and I probed around about the odd title smack dab in the middle of a Deaf collegiate utopia where the word ‘disability’ were to be left outside the gates. A willing passerby pointed out, signing in song-song like, “Oh. That;s for the retards, the cripples and those who are blind. Or close enough.”

Panic set in. My eyes were wide awake. Blind people were considered “disabled” within its own Deaf community? How can that be? We fought for recognizance for hundreds of years, our identity as a culture exploded when the 1988 Deaf President Now protests inserted the notion in millions of peoples’ minds: deaf people are capable, they just cannot hear on a level. Communities grew with the understanding that we had to shield the misconception that we were not capable, our place became more and more common in the world where ‘normal’ people – those who could hear – had begun to slowly accept that we didn’t like being called disabled and that we would thrive if given opportunity and oppression removed.

It was an unspeakable horror. To be seen as Deaf to my college mates & professors without any inkling I had Usher Syndrome suddenly turned into a laborous struggle for me as I tried to conceal any sign that I was “disabled”. I suddenly felt like a hard-of-hearing person in the hearing world, adamant not to be called disabled or deaf (blind in my case) and treated differently; the effort to listen to sounds and voices became a day’s work and by the end of the night, sleep knowing that you’re tone-deaf and others don’t know it. But then how long would it be until they found out? And called you disabled?

During my first years at Gallaudet, I avoided the OSWD eventhough it was right across from the hall from a classroom that fate chose through 4 professors, it seemed. It became a nuisance, and often I would think to myself menacingly: I am not freakin’ disabled. I am Deaf, period. I am not yet blind. OSWD, move to Pluto for all I care. Get lost.

When the new academic building was completed, and the OSWD moved to offices that occupied next to the grand big hallway where I passed the office from classes to the social cafe. I’d seen a fully blind older man walk in and out, he was the counsellor to blind students attending Gallaudet. Art would pounce his cane left to right, right to left and hitting some people in his way. Later I’d found out he’d lost his vision due to Usher’s. I was so afraid to touch him or communicate with him…. it’d just probably rub off on me and I’d become blind all of a sudden and be called disabled in my own community.

During the last years of Gallaudet, I finally began to come to terms with my rapidly deteroriating vision. In an operating accident, I lost all of my sight in my left eye and the right had 5 degrees out of 90 remaining. I had no choice but to pull myself out of the quicksand I was in, and face it head on: I was going blind. In this time, I had become an integral part of the Deaf Blind community, even working with the SBG to look over Disability affairs to help students inflicted with blindness, cerebral palsy, wheelchair-bound & a learning disability. I even became a client of the OSWD, and to my amazement the stigma of being disabled went away and my schoolwork fared better with interpreters & large-print textbook copies. I interned at the Seattle Lighthouse for the Blind and became members of the DB communities in Seattle, Toronto & DC. At one moment during these experiences, I realized I wanted to crusade for rights for the DB and travel, to educate people about being Deaf and Blind. What got me started? I felt so oppressed, even worse than when I was just Deaf. It’s difficult to get around when there aren’t accessible tools for the Deaf Blind. People in general have an ignorant attitude, intentional or unintentional.

It doesn’t bother me that Hearing people call me disabled. It has been that way for centuries. Yes, I am dis-abled to hear and see, because of equipment and accessibility that don’t exist.

But what really bothers me is that Deaf people call us disabled, and say it with such a tone just like the Hearing people do. Often me and my Deaf Blind friends would agree on a few scenarios where some Deaf people would look down on us.

Most common:

1. Deaf companies mostly have zero to two Deaf Blind employees in average

2. Several of us hosted workshops on Deaf Blindness, especially at Gallaudet and in DC – and out of 1,000 students & over 3,000 community members, 4 to 10 would show up.

3. At bars, Deaf Blind people are usually left to converse with: close friends & themselves. We have experienced introductions where others have walked off while we were still talking; hands waving in front of our faces while we couldn’t see; “friends” around us we didn’t see who didn’t bother to say hello; and it’s a struggle to get people to invite you to events in dark spaces.

4. Deaf people are throwing their TTYs away for videophones. Get this: Blind people cannot use videophones, but they can use their braille TTYs to call a regular TTY.

5. At large Deaf events, do you see Deaf Blind people? Very rarely.

While I am not accusing the entire Deaf community of blatant ignorance, I am just pointing out that Deaf Blind people aren’t more involved in the Deaf community because of two reasons: there isn’t enough education and Deaf people aren’t inclined to.

Deaf people, do you remember the times when you felt very oppressed by Hearing people? Deaf Blind people feel that way with the Deaf community and that is just terrible. We cannot hear alike. We are supposed to be a family. I find myself more and more lonelier the more my vision goes away, because Deaf people seem to not want to be around a Deaf Blind person.

Thank god for these friends I have.

Back to the point. With gadgets like the iPhone, small-font pagers, videophones, the UbiDuo – and more – Deaf people are getting more and more ahead and well into the world where they felt so oppressed 10 years ago. But the Deaf Blind still feel stuck in that phase. No one is dragging us along for the ride or encouraging the companies that already listen to Deaf consumers — to start listening to those who have no sight nor hearing.

Hearing Blind people are way ahead of us. There’s  ATMs and store debit transaction machines that are computer voiced with braille. Sighted dogs are trained feverishly for the Hearing Blind and it’s rare that a Deaf Blind person gets a dog from the ONLY dog-training school in Michigan that trains dogs for both sensor losses. More and more technology is invented these days for the Deaf, the Hearing, the Hearing Blind & the physically incapacitated. Why? Because the ADA says they should feel less dis-abled. The ADA empowers people to create an environment for those people mentioned above to move around, being able to do more and more things.

Guess what? There’s a very, very gray area where the Deaf Blind have right to access or enforcement upon companies to put us into consideration. So we’re very alone. And feeling more and more dis-abled each day.

When I am with my Deaf Blind peers, I do NOT feel disabled. By peers I mean: the partially sighted, the sighted who interpret/guide/assist us; the fully blind. I may have grown up legally/partially blind but it wasn’t until I found this new community that I called myself Deaf Blind.

Within us, we are not disabled. Out there, we are not by choice. And it sucks.

But it cannot go like this on the office walls:

Office for the Visually, Physically & Learning Challenged.

A lot of people need to look down on something in order to make themselves feel superior. I know I’m not wrong in this. I felt that way… feeling superior above Deaf Blind people before I hit rock bottom. Who better to make that perspective than someone who’s experienced both worlds?

– tactile love –


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7 Responses to Are We Disabled?

  1. MM says:

    As someone who has been in both worlds,I’m disabled and registered as such. The term, is accurate, it was determined via my profound LOSS in both ears,and the fact I had hearing issues from age 11. I was not impressed with the ‘other side of the coin’ who I found out were quite ‘disablist’ to a degree.

    People like us make waves, we make the progress in many areas we know what’s needed, and, perhaps the best way to address issues of integration and deaf-hearing, interaction. This isn’t some ‘superior’ attitude to those who had deafness day one, but a simple statement of fact,who knows better how best to approach deaf and hearing divides than those who have experienced both ?

    What we found was there was yet another ‘divide’ it was language, and lifestyle choices. Without accepting ‘disabled’ those who have a cultural approach to deafness would not gain the profile they have, I know in the UK funding comes via disability and, welfare payments also are applied through that maxim, there’s no financial help for having culture.

    The fact they have managed to get a language’ supported has made great strides for them, but mainstream views that as a communicational tool need, not how the deaf themselves see it, so sign is a disability need ?

    I think there is a lot of dishonest applications for help and funding where ‘access’ is mooted, and where very obviously,access is not going to be used for the ultimate prize… integration. Fellow ‘border-line’ people like myself are between a rock and a hard place, we are driven by alleviation advances, research, alternative ways to communicate, and ways to ‘get back’ into the mainstream of things, we then get into conflict with the deaf community, there seems no end to this ‘war’ either, hence th Gallaudet thing struck a sore point with the not deaf enough thing, it meant US, and we took it personally, not against Fernandez but against the very obvious support the ASL user gave to it, despite denying they said it, so why weren’t we convinced ?

  2. DeafLinux says:

    I understand how the DeafBlind being isolated at social events.

    Too many D/deaf sighted people would not take the time to chat because they felt talking to them is like work. We need to do more for the DeafBlind and include them in our social circles. I have a friend who is DeafBlind and one night this lady was upset that they could not go out as they thought they were good friends with the interpreters. They were hoping to join with the interpreter to engage a conversation with their non-D/deaf friends. The interpreter told this lady that she is off duty and will not do any interpreting after work hours. However, there are other sighted people in her work place joined the interpreter for social.

    Another part, a DeafBlind man who I have been friends for years and faced the same situation and the so called friends will not go out with them during off clock hours. Most think chatting with a DeafBlind is like work and stressful. I have no problem with the DeafBlind as I enjoyed their company. I noticed when I take a break to drink or eat something, they kept saying what are they saying? I can see where the problem is as many DeafBlind folks are starving for information.

    I felt it is our duty to help whatever we can to include them into our conversations because we both are part of the D/deaf world. I consider them as my brother and sisters.

    Helen Keller had a lifetime SSP and this is one of the reasons why Keller was so famous as she mingled with people all over the world. Most DeafBlind do not have a personal SSP.

    I pray that this trend will not exclude the DeafBlund from social and educational events. If you ask me if they live near me would I take them with me to a social event, act as a SSP/Interpreter, I would.

  3. MM says:

    Too true… we hear too much about deaf and Deaf, and forget there are others as well. It is the perception that there are only 2 sectors of deaf people, there are a lot more…

  4. Jennifer says:

    Its not always the deaf people’s fault that deafblind are left out. Case in point: a mutual friend whom you know very well expects the rest of his housemates, who range from deaf to hearing, to read his mind and know when he is not catching everything that is said. This expectation stems from his own fear of making waves to ask us to repeat because of being burned by one or more of us in the past (he gets the occasional cranky or impatient response from us and so therefore that applies to be expected at all interactions with us? NO! But he seems to enjoy making broad assumptions based on one or two interactions.)

    So, when deafblind put the expectations for ensuring access completely on the deaf people and sit back and don’t aggressively request to be included or show interest, as our mutual friend does, and then wonder why many start shying away because of the “work” feeling, well…sighs. Its just not always the deaf people who are the problem.

  5. I agree with Jennifer when she brings up the other side of this issue, which I should do another blog on.
    I have gone through that, also. But bear in mind, we often THINK we understand everything, whereas we might have missed some important clues or parts. There are a lot of people in denial, and I was one of them until I was 23. It took quite a while for me to realize that I had to ‘fess up whenever I missed something, or be more assertive in getting complete information. Not many people are able to develop assrtiveness, they’ve grown up passive. I’m pointing out in this blog that for the large part we are feeling disabled is because no matter how loud we say, “we need access” no one really pays attention.
    On the other hand, I have always told others, that AADB needs to step up. No more being weak, it’s time to gather the best deafblind leaders & size up a legal team and start suing & changing laws.
    Thank you, everyone, for sharing your perspective. It is welcomed.

  6. Adam says:

    I am interested in the topic of this blog. I graduated from Cincinnati State College in Cincinnati, Ohio, United States with a Deaf Studies Certificate. I am a very skilled signer and am interested in having Deaf-Blind friends. I am very comfortable with tactile (tactual) signing unlike many sighted signers in my geographic area. I began learning ASL in 1997 and have now known it almost 10 years. I try to be very empathetic towards the Deaf-Blind especially due to the isolation issues mentioned on this blog.

    One time I was with a former Deaf-Blind friend and at the time I hadn’t been trained on guiding. Luckily I had watched other SSPs guide enough that I had a real clear idea on how to do it. Well sure enough I guided him safely between his apartment and the restaurant we went out to eat at.

  7. Tactile Love. Can’t think of anything better than the company and assistance of a dog. They are very loyal and very tactile.

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