I'm deaf and legally blind, or 'deafblind' as I label myself. Being 'deafblind' puts me in a small subculture group within a minority group. There are about 28 million deaf or Hard Of Hearing people in the United States and about 42,000 to 700,000 people with some combination of hearing loss and vision loss.
About 'deafblindness'
'Deafblindness' does not mean total deafness and total blindness, aka Helen Keller. It varies so widely in the degree of hearing loss; from mildly hard of hearing but capable of understanding some speech to total deafness and the degree of vision loss; from having low vision, to having tunnel vision, to total blindness.
So finding a common goal or "need" is often difficult. Some may need Braille access while others don't need any print accommodations. Some need Tactile Sign Language (TASL); which is "hands on" signing, while others do not sign at all. Some identify themselves more closely with the blind community while others identify more with the deaf culture community.
Misleading representation
Because of these wide variances in 'Deafblindness,' I feel they cannot be represented fairly by one "spokesperson." It irks me when a fellow 'deafblind' person speaks up and demands "Deafblind people NEED....", "The Deafblind CAN'T...."
No, you don't speak for me. Instead of sticking a large label across an issue, such as demanding that Facebook's new color theme statuses are inaccessible for the 'Deafblind,' (they're fine for me), it should be left up to each individual to speak up for themselves.
Leave it to them to address their own needs. Besides who really knows your needs better than you?
So stop speaking for the "whole" group and address your own needs. It's much better to say "it's not accessible for me and may not be for other 'deafblind' too" instead of "all of us."
The sympathy card
The same goes for the general public who feel a need to either invent things for us, advocate for us, or want to help us out.
These people feel a need to alleviate their own guilt for being able-bodied, want to feel good about themselves, or seek attention for their "Samaritan" act. Half the time these people with good intentions don't even consult with us on what we really need or want.
No, you don't speak for me. Don't assume that I even have a problem.
I know what I need or want and am pretty capable of figuring out a solution for myself. Don't assume that there's a "one size fits all" solution for me or any other 'deafblind' person.
No, I don't need your "Tactile Proprioceptive Communication Aid" (what a stupid invention)!
No, I don't need your help. I'm perfectly capable of getting around on my own with my white cane. I can't count the number of times I've been randomly grabbed, led across a street or to a bench against my will and the stranger smiles and walks away.
No, I refuse to be your inspiration. I am just a 'deafblind' woman, wife and mother, period! All I, and other 'deafblind' people, ask is to be treated the same as anyone else, to be heard, and to be accepted for who we are. So please, stop speaking for me.
