Guest blogger John Miller is a writer, sports enthusiast, former graduate student, and author of the blog A Blind Man’s Journey, whom we first met – and profiled – in Meet John Miller on the VisionAware website. John’s blog describes his long and not-yet-finished journey, beginning with his early childhood and diagnosis with Norrie disease, which causes blindness and progressive hearing impairment, to his current life as an employee of LC Industries, Inc., operating under the AbilityOne Program.
In The Rarity of Multi, John reflects upon Blogging Against Disablism Day (May 1, 2013) and his own experiences with “disablism” as a person with blindness and progressive hearing loss. It is reproduced here with John’s permission.
Blogging Against Disablism Day: The Rarity of Dual Sensory Loss
I’ve spent a fair amount of time reading through some of the other posts for Blogging against Disablism Day, hashtagged #BADD2013 on Twitter. I didn’t want to try and come up with my own entry unless I felt I could contribute a fairly unique perspective to the conversation. And I think I can.
Mine is not altogether unusual I know, but it is also not considered by many, even those with disabilities. That’s right, I have two obvious disabilities: blindness and progressive deafness.
Coming to the Party: Disablism Happens
OK, you’ve persuaded me to come to this party. I’m nervous, because I know going in that the room will be full of people bustling about and talking as loudly as possible. You assure me that you’ll keep this in mind and make sure that I in some way remain a part of things.
We get there, and I take a seat. Immediately, you squeeze my arm, say “I’ll be back in a minute!”, and disappear.
I sit back in my chair and float away into my thoughts.
“Oh, what? You talking to me?”
“Yes, well sort of… never mind.”
On the Job: Disablism Happens
Now on the job: I’ve gotten myself arranged in my little section and settled in for the tedious work that will make up my eight-hour day. Machines clatter to life, and I start adjusting my hearing aids to the extent that I can stand while hopefully being able to perceive if something is said to me.
You take your customary position across from me at the table and speak some words in greeting. Then we kind of drift off and do our own thing, as usual.
A new individual takes the seat immediately to my left.
“Oh, he can’t hear you,” I hear you tell him. This, despite the fact that I’ve advised you that in such situations where I might not be aware of someone attempting to talk to me, it’s best to address me and inform me of that pending conversation: “John, that person on your left is trying to talk to you.”
This gives me the chance to fully explain my hearing needs, plus actions the new individual can take if he or she wishes to have me understand more easily. And from an admittedly self-serving vantage point, it makes me come across as a little more competent.
Now please understand that I’m not attempting to down or attack anyone for these challenges. I know full well that it can be hard to remember that I or others like me have such struggles if you don’t share our perspective. I just want to help clarify why sometimes I might not appear to be as sociable or willing to “come along” as maybe you’d like.
Living with Combined Vision and Hearing Loss
Obviously, if one only has one of these issues, then one can compensate more smoothly. A deaf person can watch lips, or a person who is blind might be able to hear her name being called over the crowd noise. But being a relative newcomer to the deafblind world, I’m not yet aware of all the coping strategies I could implement to help me in these and similar situations.
The biggest thing I do for myself, usually, is to notify – repeatedly if I have to – that I have a hard time hearing sometimes.
Also, to the extent possible, I try to be the asker of questions. Goodness knows it’s easier for me to follow along when I know what the discussion topic is. Of course that’s not always doable and would lead to social awkwardness, perceived egotism, and a bunch of other unpleasant occurrences. In those cases, I just have to hold on tight and enjoy the ride.
Luckily, these issues often only serve as amusements for me and don’t result in serious difficulties. However, I have no doubt that I’ve lost chances at deeper friendships or perhaps dating/romantic relationships because of my dual disability status. I’m not even aware of the extent to which these may have prevented or interfered with my being granted better employment opportunities as well.
This is why I feel it is very important that we be willing to speak up for ourselves and hopefully allay some of the nerves that other people might experience when confronting us. Ultimately though, I can only do the best I can and hope that somehow that ends up being enough. You can read my other Blogging Against Disablism post from 2010, on whether all blind folks need guide dogs.
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