Okay, let's see how much I can accomplish here.
I often see this pop up in almost every minority group under the name, if there was a way to cure your Disability or Chronic illness (emphasis on disability and chronic illness ) would you do it). The answer isn't going to be yes or no.
For many people, they have accepted their disability or illness if it happened early in life as a part of their identity. Hence, why we sometimes use identity-first language. Others choose not to let their disability or illness define them, but rather, have it be referred to as a person with an additional characteristic (person-first language).
Most people who are on the identity side of things argue that they feel, philosophically, that they've been made this way for a reason. If you haven't been given this disability, you wouldn't have the experiences you have now. So I would say that you could cure your disability, but it wouldn't overwite any experiences you had. It'd simply amend to what you already have.
But now let's take it a little bit further than that. What does accept really mean? Here's a little Excerpt from Deaf-Blind and Determined.
Saturday, November 29, 2014
DB speech by scott stoffel
(This is a long document but well worth the read. Information
about Scott's books can be found at the end of this email. Please
feel free to share.)
Scott Stoffel's Speech "Listen to the Vision"
(AKA: Deaf-Blind Monsters)
November 2, 2014
Fourth Anniversary of DeafCAN! Banquet
For more information on DeafCAn, the SSP program or to make a
donation visit:
deafcanpa.org
SCOTT STOFFEL: Okay. Testing, one, two, three. All right.
I am Scott. I will be your Deaf-Blind speaker for the evening.
So we have a Deaf-Blind person up here speaking to you.
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What are you expecting me to say?
Supposing I was Helen Keller, the most famous Deaf-Blind person
standing here now, what do you think the first thing Helen Keller
would say? It would probably be the same first words you get
from Hannibal of Carthage. You know what I mean, of course.
Is this thing on? Can you hear me in the back? Did you feed my
elephant?
Maybe Helen would skip the elephant.
Joking aside, what do you expect from a Deaf-Blind speaker? Are
you expecting any of the usual speech? Yeah. I will tell you
about how it was very hard growing up with disabilities. And I
had to struggle to the brink of despair.
But then one day, I decided to accept my disabilities. I
overcame them. I accomplished some great athletic feat, like
tying my shoes. Hey, that would be a great feat. These shoes
have no laces.
I also wore blue and red pajamas with a big "S" on the front,
conquered the world and lived happily ever after.
Is that the kind of speech you were expecting?
You don't know how many times I've heard that speech from
Deaf-Blind people. It seems like everyone gives that same speech
over and over again.
And the audience loves it. Every time, 15-minute standing
ovation. They say you are incredible. You should be
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president and you are standing there in pajamas.
(laughter)
It is so redundant. Sometimes I feel like society is expecting
some kind of show. If Deaf-Blind speakers are like Phineas
Barnum's 19th century human oddities. They do a show.
Come and see the amazing Deaf-Blind man! He is faster than a
speeding driver, more powerful than duct tape, able to lease tall
buildings with a single bond. It's a class E savings bond.
But honestly, would you take a guy seriously standing here in
pajamas? With the big "S" on the front?
What is it with that speech? You get it over and over and over
again and it's always the same. There is something about that
"I accept Deaf-Blindness" routine that people want to hear.
But what does it mean? What does it mean if somebody says I
accept being Deaf-Blind? Why does that make us amazing?
We are so amazing and incredible, they tell us that. Why?
What do the words mean, "I accept?"
I don't think there is a good definition for I accept.
I acknowledge my deaf-blindness. I try to understand it and cope
with it. But that doesn't seem to be society's definition of
accept. People treat it like it means cure. The person says, "I
accept" and that means they are no longer Deaf-Blind. They live
like they are not Deaf-Blind. The disabilities are gone. We
have overcome them. So they no longer exist. No problem.
If you want the whole text, let me know. So let me ask you this question. I've started asking this question because I've been having arguments with people who were totally blind versus those, like myself, who have combined disabilities. Would you rather be deaf, or would you rather be blind?
Most people would say they would rather be blind. That would be a logical answer. And Helen Keller is right, in a way. She once said, being blind is like being cut off from things, while being deaf is like being cut off from people. So, being deaf blind must be like being cut off from the world. So, naturally, you would rather be cut off from things. We, as humans, are social creatures who, no matter if we're introverted or extroverted, want to bond with other humans in some level.
This is why I hate having to depend on others to cruss busy lighted intersections. But, until a cure for my hearing loss is found, I will still be subject to needing assistance crossing streets. Someone once said,it's not the hearing aids that is causing the problems. It's the ears. Think of purchasing the most expensive, high-quality TV antenna for your very old television. You find that no matter how good your antenna is, your TV still displays a crappy output signal. That's because it's the TV itself, or in this case, the cochlea.
Now, when the cochlear implant first came out several decades ago, it was seen as a menace to the deaf community. People, especially hearing parents who got children implants were shunned by the rest of the community. Their sign for a cochlear implant was two fingers held together, making a stabbing motion in the neck. I guess it was supposed to represent a vampire or something. I read this in a book called I Can Hear You Whisper, by Lydia Jones.
I can imagine how some members of the blind community would react to the retinal implants, which are currently being developed by Second Sight. Strangely enough, many people who belong on the vOICe mailing list were okay with it, but people from the National Federation of the Blind might not be glad about it.
The reason I'm posting this now is because yesterday, I had the opportunity to go down to my local university's eye research institute. I submitted some genetic samples which a lab will study over the next year or so. It is primarily meant to benefit me, though it'll hopefully give the lab some useful information to add to their collection.
My doctor told me that I would need a multi-step process to have either vision and or hearing restored.
First, I would have to look into optogenetics, which uses a light-sensitive protein that stimulates the last layerof cells in the eye that respond to different wavelengths of light.
Next, I could look into a vector that would repair the gene on the retinal cells. The only problem with that is that it won't change the mutation in the rest of the human body.
If I wanted to fix all the proteins in my body, I could look into a special kind of medicine, or pill, that would cause the skipping of a special signal that would normally cause the sequence to truncate to continue building.
But, since a lot of damage has been done by the malformation of the proteins, I'd need a stem cell or eye transplant procedure to fully benefit. I heard that they're working with certain species of quale, as they're known to regenerate cochlear cells.
Now, ask me this question six or seven years ago, and I would have said, no, I do not want a cure for my disability. When Itook an anatomy and physiology class in my last year of high school, however, I completely changed my mind when I read an article about how some people expressed hearing things whenever they saw certain forms of colours.
Now, if you had read the Giver, by Lois Lowry, I I walsy like to use this example because Jonas and everyone else was engineered to not see colour. Unfortunately, Jonas had a flaw, which turned out to benefit him. The giver also had this flaw. The birth mark was simply having pale eyes, while everybody else had dark eyes.
One day, Jonas and Asher were tossing an apple around. Once, when Jonas had tossed it into the air, he noticed something peculiar come about the apple, but when it was back in Asher's hand, it had remained its dull nondescript shade.He noticed everything else was this way as well. In the auditorium, during the ceremony of birth, when the chief elder had skipped his name, Jonas finally went on stage, where he noticed the audience's faces have that same peculiar quality as the apple.
When Jonas and Fiona were going down to the House of the Old, he caught glimpsed her hair, for it had turned into that mysterious quality he had seen in the last two occasions. This prompted him to ask the giver, who tested him. He had Jonas look at the books on the highest bookshelf, and then he instructed Jonas to look down at the sled in his memory. Both of these things had the same hue that had puzzled him. The giver told him he was seeing the colour red.
So, when I was growing up, I imagined associating various events with certain musical keys. For example, the fourth of July was always in C-sharp major or D Major, depending on whether it was sunny or cloudy. I always imagined Twilight in the form of B-flat major, and that's the key I associated with my high school graduation. It's very possible that I might have seen colours when I was very little, but nobody told me what those colours were that I made my own associations in my mind.
Once I learned that there was an actual name for it, synaesthesia, I vowed to find some way to complete the rest of the puzzle so I could finish describing the way colours look like through sound. I've come across lots of videos, like Neil Harbisson and his Eyeborg back in 2013, and I hope things are still being worked on.
Here's something else I've been interested in. If a person born deaf never heard voices before, and they were schitzophrenic, would they still hear voices even though they never heard voices talking in the language they learned? Likewise, if you gave psychedelics to a blind person who had never seen before, would they have any visual experiences? I've been interested in finding this out for myself, but unfortunately, psychedelics are illegal in the US, unless there happened to be some kind of study out there where it was done in a controlled manner.
Anyhow, hope this gives you some of my views on the subject.
Ulysses, KJ7ERC
She/theyReedsy