Paralympian Aine Kelly Costello – I am not a “Superhuman” and my blindness does not need to be “Cured”

By   /   September 29, 2016  /   7 Comments

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Our language can’t exists in a vacuum, separate from our intentions. It is our job, as communicators, to constantly strive to make these two see eye to eye. That is #howeyeseeit

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Language is never black and white. As this NY Times article suggests, most of us, on the one hand, would hate to think of ourselves as racist or homophobic or ablest, and on the other, still hold biases that we are barely aware exist. After all, we don’t buy biases at the supermarket. They prefer to creep into our conversations or essays or Facebook statuses. Sometimes, they are the wallpaper to us, and the rhinoceros in the room for our audience. I’ll show you a couple of my recent rhinos.

We are the Superhumans

In the lead-up to the Rio Paralympics, Channel 4, the official paralympic broadcaster for the UK, released a trailor depicting people with disabilities in a positive light. In fact, they went so far as to suggest that the subjects are no ordinary human beings.

“We’re the superhumans!”, reads the gleeful tag line.

I get it, Channel 4. You’re a broadcaster in need of a punchy, positive headline. You’re genuinely trying to portray people with a disability as positive and thriving members of society. You’re even making an effort to make your video accessible by audio describing and close-captioning it.

But as a person with a disability, I find it demeaning that my peers are being put in a box called “superhumans”.

Let’s brainstorm.

SUPERHUMANS:

  • Superheroes
  • Preternatural talent
  • Unhuman
  • Above and beyond
  • Freaky
  • AI
  • … What have I missed?

I am blind. I am a Paralympian—a swimmer. And I am definitely not a superhuman. I hate to break it to you, but just like every other high-performing sportsperson or performing artist, I didn’t wake up one day and discover my mermaid streak.

You know what most Paralympic and Olympic swimmers actually do?

  • Train upwards of 16 hours/week
  • Go to the gym
  • See nutritionists and keep tabs on what we eat when
  • Benefit from Sport Psych services
  • Work with physios and massage therapists
  • Reshuffle the rest of our lives around our sport

Call us nuts. If you insist, call us “super humans” (i.e. humans who are super/awesome/ …). But every human in Channel 4’s campaign trailer has put far too much of themselves into their sport or art to deserve to be likened to the Incredible Hulk.

Foundation Fighting Blindness

The urgent mission of the Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by […]the entire spectrum of retinal degenerative diseases.”

Why?

More than 10 million Americans of every age and race suffer vision loss from these blinding diseases.”

And they’re bringing in the bucks, alright:

“[…] the Foundation has raised more than $600 million [towards] leading-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, and pharmaceutical and nutritional therapies.”

I get it, FFB. You want to help us, or at least, our future counterparts, be free from the burden you find blindness to be. This, you are sure, will remove much unnecessary stress from our lives, give us opportunities we were afraid to dream of before, and help us integrate better into society. I’m glad the research you have funded exists, and I’m glad you are fundraising to make that possible.

But it disgusts me that, as a fundraising tactic, you use methods which research (not to mention common sense) is showing worsen people’s perception of just how awful it must be to actually be blind for a substantial length of time. Your methods also place undue weight on the problem of blindness itself, when a lot of the problem lies in those sneaky biases I was talking about at the beginning.

Your thinking is engrained in your language—language which those who campaign on behalf of you naturally spread. If my blindness needs “cured”, and I “suffer” from my vision loss, how will society react if I honestly say that I really don’t know if I’d choose to get some sight back if the opportunity arose? What will blind children, being used as the poster girls and boys of fundraising campaigns for FFB think when the scientists you fund for research say things likeFFB […] has given hope to people who didn’t previously have hope”?

Compounding that, your tactics ask people to act on that pull of their heartstrings. Your latest campaign, #HowEyeSeeIt, challenges sighted people to do something blindfolded and video the experience, so everyone else finds out what it’s like too.

Let’s say the task is for Eva to navigate from a chair in the middle of a classroom to the door. To make sure she’s getting the real deal, Eva borrows her friend’s cane for the exercise.

Eva’s experience probably goes something like this.

Step 1: blindfold on.

Feeling: sweaty.

Step 2: look for cane.

Feeling: adventurous.

Step 3: start walking.

Feeling: trepidation.

Step 4: keep walking.

Feeling: disoriented duck

Let me try the real-life version of Eva’s exercise, as someone who was born blind.

Class is over, time to leave.

Step 1: pick up cane (I know where I put it).

Feeling: half-asleep.

Step 2: listen to hear where that door is that people are leaving from.

Feeling: alert dog.

Step 3: with one hand blocking desk collisions, and the other preventing them with cane, follow people.

Feeling: #freshairtime #freedom.

*****

Our language can’t exists in a vacuum, separate from our intentions. It is our job, as communicators, to constantly strive to make these two see eye to eye. That is #howeyeseeit

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7 Comments

  1. LOSTRELIC says:

    Yes. From my perspective, it is part of the feeding of ignorance in our society, at the expense of deep understanding – of actually appreciating a human-being, with openness, for who and what they really are.

    Mass media constantly tries to simplify things, to stereotype things, to achieve some end goal. Like fast food. The result is it comes out all flash and no substance. But it brings in the dollars, and keeps CEO’s on luxurious salaries, and under delusions of grandeur and righteousness; no no, they are “philanthropists”, they are “the good guys” conquering “bad things”. Of course, some may experience blindness as a terrible, frightening tragedy – but those situations must also be met with openness; to meet the person who and where they are at, in their own experience of life.

    I can’t avoid feeling a sense of grotesqueness at the mass media version, and the perceptual horrors that it perpetuates.

    I appreciated reading your perspective, and enjoyed your post, as I have noticed those “superhuman” themes making the rounds also. Thank you.

    • Aine Kelly-Costello says:

      Hey, thanks for sharing your thoughts. Yeah, losing your sight, especially suddently must seem terrifying at first and as you say, organizations like the Blind Foundation NZ have a critical role in meeting people where they are at and taking their service provision from there. On the language relating to people with a disability front, culture change is about our perspectives becoming accepted in the mainstream so it’s been exciting to see that people are engaging with THIS media!

  2. Mike in Auckland says:

    Yes, being blind already, born or becoming blind during life, that does leave the person to try and cope best, with available supports, no matter what others may suggest as “aids” or even “cures”.

    But science will always work on finding ways to prevent or treat any disease that may lead to forms of disablement, which may benefit some at some time in the future.

    And I am sure there will never be a cure for something that is irreversible, so such talk is misplaced.

    I suppose it leads to affected persons to rather become philosophical about it all, that is if such “leisure” is possible.

    What society can do is to accept and respect the persons with whatever “disability” or condition, and to offer them the same treatment as human beings, and where needed the available supports to lead a fulfilling life, with or without work.

    Sadly some governments have recently chosen to do such things only with the intention to reduce costs, not so much for meeting the existing rights of persons with disabilities that a UN declaration offers them. The aim seems to be to somehow squeeze people into the existing “labour market”, thus “enabling” them to become “independent” from government support systems.

    But that should in my view not be the main criteria and aim, people should be given the financial and other means to offer them available choices, to work, or to do other things, that achieve fulfillment and so forth in lives. Existing labour markets are not necessarily very favourable to some with physical or mental impairments. Why try to force people to meet the market’s expectations, why not change the “marketplace” or rather social and ecomonic environment?

    • Aine Kelly-Costello says:

      Hi Mike, you raise a good point about the dehumanizing of people with a disability that happens when governments put the incentive to save money before their desire to help everyone thrive in society. Regarding the research around improving people’s vision, , I think it’s cool that that’s happening; I only wish the campaigning around it could focus more on a language of choice and flexibility—and totally avoid these notions of giving back hope, reducing suffering, curing, etc … I know I’ll keep pushing for this, if primarily through my own choice of language.

  3. Andrea says:

    It’s odd that, no matter how many years the collecting tins are rattled, all we seem to get at the user end is the next poisonous concoction guaranteed to shorten life in some way, along with the Great Medical Profession telling us, ‘There’s nothing else we can do for you. You’ll just have to live with it.’

    The present system is neither generous, nor practical for most of us in the differently abled world.

    • Aine Kelly-Costello says:

      Yes, Andrea, I think organizations like the Ffb shoot themselves in the foot when they want to help blind people, but do so in the way I was outlining, effectively undermining their own values of positivity and improving quality of life by creating a false sense of the role blindness plays in most of our lives and how we as blind people navigate that. I have to keep reminding myself that the FFB, FFB-FUNDED researchers, and Channel 4s of this world do fundamentally want to do something good, and that it is their language, and not their general intent—certainly not the people themselves—that is the problem per se.

  4. Aine Kelly-Costello says:

    Update on the #howeyeseeit campaign: the National Federation of the Blind have announced that the FFB are ending the blindfold challenge part of their campaign a week ahead of schedule. The FFB sort of acknowledges the concerns raised by the NFB—and all of us who agree with the stance of the NFB. http://www.blindness.org/foundation-news/foundation-fighting-blindness-announces-completion-phase-one-howeyeseeit-campaign