<i>[Marie-Eve Veilleux]</i> Bonsoir à tous! Merci énormément d'être ici ce soir
à cette grande conférence du Forum social mondial 2016
sur le capacitisme et l'audisme.
Je prends quelques instants pour reconnaître que nous sommes présentement
sur un territoire mohawk non cédé.
J'aimerais également souligner que nous sommes sur un territoire
très inaccessible aux personnes dont les capacités ne se conforment pas
aux normes autour desquelles notre société est construite.
Pour ne donner qu'un exemple, certains d'entre vous sont arrivés ici en métro
après un parcours probablement assez paisible,
alors que d'autres n'ont pas pu utiliser ce moyen de transport,
car la station Place-des-arts, pourtant au cœur de la vie montréalaise,
est inaccessible aux personnes qui ne peuvent pas utiliser les escaliers.
Je me présente, mon nom est Marie-Eve Veilleux.
Je suis cofondatrice de Québec accessible,
une initiative citoyenne visant à faire adopter une loi québécoise plus coercitive
pour promouvoir l'accessibilité et l'inclusion des personnes handicapées,
J'animerai cette conférence.
Cette grande conférence sera peut-être l'occasion pour vous d'en apprendre plus
sur deux systèmes d'oppression touchant les personnes handicapées
et les personnes sourdes.
Vous en apprendrez aussi plus sur leurs luttes
qui sont parfois parallèles, mais aussi bien différentes.
Pour commencer la discussion, j'aimerais vous présenter
notre premier panéliste, Lawrence Carter-Long.
Danseur, amoureux des mots, amateur de whisky et passionné des médias,
Lawrence Carter-Long est un homme difficile à cerner et à renverser.
L'une des autorités mondiales en matière de représentation médiatique du handicap,
son approche alliant arts, médias et politiques publiques a été célébrée par
plusieurs individus et organismes dont le maire de New York, Michael Bloomberg,
et l'American Association of People with Disabilities.
Fondateur du festival de films de renommée mondiale disThis!,
qui a eu lieu de 2006 à 2010, il a également été l'un des premiers artistes
à participer à GIMP, une chorégraphie provocante de Heidi Latsky.
En 2012, Lawrence a programmé et coanimé la série
THE PROJECTED IMAGE: A HISTORY OF DISABILITY IN FILM
sur la chaîne Turner Classic Movies rejoignant 87 millions de téléspectateurs
De 2006 à 2010, Lawrence a coanimé et produit l'émission
LARGEST MINORITY RADIO SHOW
sur les ondes de la légendaire station de radio indépendante
financée par les auditeurs WBAU-FM à New York.
Depuis deux décennies, il cumule les expériences
au sein de nombreux organes de presse régionaux, nationaux et internationaux,
dont des entrevues et des articles dans, entre autres, l'Associated Press,
le New York Times, le Washington Post, le USA Today, Al Jazeera et Diversity Inc.
Lawrence vit et travaille à Washington, DC.
On est très chanceux de l'avoir. Lawrence Carter-Long.
<i>[Lawrence Carter-Long]</i> Merci.
Hello. Bonjour everyone. It's a pleasure to be here.
There's a lot to say.
I think before I talk about ableism and what is ableism,
because there's a lot of confusion, and I think a lot of differing opinions
about the words we use and the language that we use,
I think we also have to take just a moment
and talk about what dis-ability is and what disability isn't.
To make a few things clear, and this might be somewhat controversial
but I'm from the United States
and people in the States are saying controversial things
all over the place these days.
First off, we need to understand that disability is not a dirty word.
It's not a bad word. It's not a curse word.
It's not a word that we need to avoid.
You'll hear a lot of times people who are attempting to be polite,
who have the best intentions, saying things like
"see the person, not the disability" or "disability doesn't matter to me".
I'm here to say, in 2016, just think about this for a moment.
Would anybody dare say, in 2016, that race doesn't matter?
Or that they see the person, not the gender?
Anybody that did that in 2016 would instantly and I think rightfully
be called out as either naive or as ignorant.
Similarly, to suggest that disability is simply a "difference"
or that it has no impact on a person's life is a very privileged position to take.
Most disabled people don't have that luxury.
The assertion flies in the face of reality
and minimizes the very real discrimination that disabled people face.
So, let's not try to minimize it. Let's not try to push it under a rug.
Let's not try to pretend that it doesn't exist.
Disability is also not the opposite of ability.
I want to say that again.
Disability is also not the opposite of ability.
"Dis-", the prefix that's added to the beginning of the word "ability",
means asunder.
It means "apart from".
So what that means quite literally, when someone uses the word disability,
is that someone is apart from the notions of ability
that people in the culture or the society tend to have,
that the individual they might be talking about,
the condition they might be talking about
<i>dis</i>rupts what people consider normal.
It shakes things up. But it's not the opposite of ability.
It's something in addition to ability. It's a sideways view of ability.
It's a shift in perception. It's a shift in understanding.
So, if you're saying "see the person not the disability",
you're only getting half the picture.
You've got to see the person and the disability.
And you've gotta put it all in context or you're missing out.
The notion that we could even see the person, not the disability
is fundamental to what ableism is.
It assumes that you can separate it.
It assumes that you can be different or distant or apart from
that experience that you've lived.
It's an attempt to erase that experience
and there's an understandable reason why that occurs.
People tend to try to erase disability because the common understanding,
or misunderstanding, of disability was within what is called
the medical model of disability.
That was dominant because doctors were saying that whatever the condition was,
it had to be fixed, cut out, removed, gotten rid of.
If that's the common understanding of what disability is,
of course, people are going to have that impression.
Here's what we've got to understand now, in 2016,
which is central to this conversation: the old rules no longer apply.
The playing field is different.
Our thinking and our language and our public policy
has to catch up with that.
So disability used to be a diagnosis.
It used to be something that the doctor gave you,
that you got in the hospital, something that was forced upon you.
But it's now much bigger, broader than that.
It's a community. It's an identity.
And it's a history that seldom gets told.
Think about that again.
Disability, when you put it in context,
take it out of what they told you it was.
It's a community, an identity, and a history that seldom gets told.
What's happening now is that we are telling it.
People are shocked to learn, in 2016, that it's still legal
to pay disabled employees below minimum wage,
sometimes pennies an hour in a sheltered workshop.
Putting somebody in a segregated setting
and paying them less than the minimum wage
is ableism.
It's a relic in the United States. It started in the 1930s.
People with disabilities are penalized, in the United States,
if you get Social Security Disability Insurance
or support from the government, for getting married.
They lessen your benefits.
That is ableism.
Try to get a job interview, a Braille menu
and you'll find ableism exists.
It impacts people's everyday life whether it's intentional or not.
That's, I think, the most shocking thing about ableism.
When people would conceive of a word and wonder how to use it.
There are the overt types of ableism, those that you can't deny,
those that you can't ignore. They would be…
One of the issues I'm working on in the United States
is murder of disabled children or adult children with disabilities
by their loved ones or by their caregivers.
And we find that those who killed their disabled family members
get less severe penalties than
they would if they killed a non-disabled child.
That's ableism.
Look at what happened just three weeks ago in Japan
where a former worker in an institutional facility
killed 19 people with disabilities
and said that the world better off if we rid it of disabled people
and he called it mercy killing.
That kind of phony language, that kind of white-washing is ableism.
Eugenics is ableism if you're trying to
prevent certain groups of people from being born
and Supreme Court Justices in the United States say that
three generations of imbeciles are enough.
We're gonna wipe you off the face of the Earth, people like you, disabled people.
That is ableism.
It's the segregation of people, like I said, in sheltered workshops.
Those are the overt kinds. We can see them everywhere.
They're easy to spot. They're easy to pick out.
They're easy to call out.
But most forms of ableism, I would submit,
are not synonymous or equivalent to blatant hate.
They're much more subtle than that.
They're much more harder to recognize than that.
People will respond if they might use words or language that you don't like and say:
Oh, that's not discrimination, no one would do that to somebody with a disability.
We've had presidential candidates in the United States do that recently.
And they'll directly counter what a disabled person's experience might be.
So if there's a film where the disabled character
decides that they'd rather be dead than be disabled,
and that's presented as a romantic comedy and they hand out tissues
at the movie theatre as you go in, expecting you to cry,
and that's supposed to be acceptable. That is ableism.
When you point out that it's ableism and the non-disabled person says:
"no, no, no, no, wait, that's something else,
that's just a movie".
That is ableism.
Other things that you might not think about as overt types of ableism are:
Soft bigotry.
Low expectations: "Oh, he could never do that,
she could never do that, they're disabled."
Infantilization: treating someone like they're a child, right?
You meet someone as you're entering the grocery store or out on the street
and they go "Hi buddy, hi pal, hey chum, how are you", right?
Not meaning to be offensive, but being offensive nonetheless.
Acting like disabled people are not sexual beings,
refusing to provide an education.
The most subtle forms of ableism attempt to erase disability,
make it somehow more palatable, make it somehow more acceptable.
For example, in the school setting, they might say children with special needs
somehow to make it softer, easier, to put the onus on the child,
the responsibility on the child.
I am here to tell you that there is nothing special
about wanting an education.
There's nothing special about demanding an education.
There's nothing special about wanting the same things
that non-disabled people get to take for granted.
So we have to push back.
We hear these phrases all the time and they don't seem mean,
overtly nasty on the surface.
And yet, they chip away at what someone's life experience might be.
So, rather than being a disabled person,
you might have a person with different abilities.
What is different abilities? Is that someone who's bilingual? Right?
Is that somebody who knows how to juggle?
What different abilities doesn't do is it doesn't speak to the discrimination
that we spoke of earlier that occurs specifically to disabled people.
It erases the discrimination. Right? It tries to get cute.
Physically-challenged. What is that?
Is it like you're climbing a mountain in a snow storm?
That you've got some sort of extra burden?
No, I'm not physically challenged, I'm being discriminated against.
Don't sugar coat it.
We have to fight back and resist the urge to sugar coat it.
One of the ones I've heard most recently are people with exceptional abilities
and I'm wondering what those exceptional abilities are.
Getting around, walking, I have cerebral palsy,
is difficult enough as it is.
Do I need to learn to use a unicycle now?
Do I need to learn how to spin plates on poles?
That would seem pretty exceptional to me. Right?
If you're gonna use the word exceptional, it better bloody well be exceptional.
It better be something that you don't see everyday.
If it's something that other people take for granted, however,
there's nothing exceptional about it.
So, I put the call out the other day.
I've got a few thousand friends on social media and Facebook and places.
And I said I want this to be more than me pontificating in Montreal.
I said what do you, folks, think ableism is?
And they offered some amazing things that I'd like to share with you.
Chris Wylie gave me a good one.
Chris said: "I don't see your disability".
How many of you have heard that one?
I don't see your disability. Right?
And I'm like, then you aren't paying attention.
If you see the person not the disability, you're missing half the picture, right?
Where's the tendency to do that coming from?
Some other ones that came out.
People with mental illness said to me that people scrutinize
whether or not they have a mental health disability
because it doesn't fall on to a box of what a person with mental health
should seem like.
They provide examples that are jarring
and even where extreme anxiety or depression severely limited their lives
and people would respond with fortune cookie messages.
"It can only get better." "Oh, everybody feels that way."
Telling somebody who's experiencing extreme anxiety
that everybody has those thoughts isn't helpful, folks
Do other people really come to believe they have rabies and shut themselves
away in their house for months on end?
I don't think everybody has that experience.
So, if they do, don't minimize the experience that somebody has.
I think one of my favorite definitions of ableism
that was provided the other day was where somebody said…
Martine O'Callaghan said, she's from Ireland,
"Ableism is expecting a high five for treating disabled people like people".
That's a good one. That's a really good one, right?
If you provide the accommodation, you do what somebody needs,
what somebody requests so that they can partake in your event,
you give them the same consideration that you just afford everybody else
and what, you want an award for that?
You want some applause for that?
You know, rather than adding in accessibility at the end,
after somebody comes to you, why don't you make that part of the budget
when you plan the event?
When you're beginning to think about the process.
When you're starting the process. Rather than making it an after-thought.
It's an interesting thing about disability if you think about it.
There's a lot of talk these days about diversity
and I find that disability puts the "D" in diversity.
It's right there at the front of the word. It's the first letter. Right?
There's also the others, I, V, E, R, you can whatever you want
to those other letters.
But we haven't been taught to think about disability
as a component of diversity.
We certainly haven't put it at the front of the word.
We haven't put it at the front of the process.
We haven't put it in the front of a budget request.
And we haven't put it at front of the list of people
that we tend to invite.
Until we do that, we will be experiencing ableism.
So, what does that mean? Where does that leave us?
What do we do? What do we do?
I think there's a lot of different directions
that we need to be thinking about.
We need to re-think what an accommodation is.
Because every time, and I've done thorough exhaustive research on this
and I can't find one single, solitary example where an accommodation
to help a disabled person didn't help everybody else.
Everybody benefits. Let me give you one example: curb cuts.
Not only benefits wheelchair users but they also make life easier
for people pushing baby strollers, those with luggage carts,
folks trying to sell pretzels on the street corner.
Everybody benefitted.
The governments hemmed and hawed and said "oh, we can't afford it, we can't do it.
Ah, we never see disabled people anyway. Why, why, why, why, why…?"
And then when they put in it, guess what?
Not only did the disabled people show up but other people started using it too.
It's not just curb cuts, text messaging was initially developed for deaf people
and now who among us doesn't text?
I text more than I talk on my phone. Dig a little deeper, right?
Every single time an accommodation has been made everybody benefits.
That's an impressive track record.
What we're trying to do with efforts, like we're doing here tonight,
is to facilitate that kind of understanding and perspective,
to interject the disability consciousness into everyday situations
that thus far too many have had the luxury of taking for granted.
Why would you take something for granted that benefits other people?
I think I'll close with two thoughts.
One, the way the syntax and the language breaks down in the United States
is a little different than what I've seen in French
and Laurence is going to get into that.
But in the States, there's a tendency to really push what's called
person-first language.
So, in English, you would say "person with a disability", right?
Now, this was really pushed, first and foremost,
by people with intellectual disabilities who said "I'm getting tired,
I'm tired of being called an idiot. I'm tired of being called an imbecile.
I'm tired of being called a retard. So, I want to be a person first."
Guess what, if you've been thought of as subhuman your entire life,
you're entitled to say that.
You get to decide what you want to be called.
But it didn't stop there. Language is a funny thing.
Words are a funny thing. Culture is a funny thing.
And pretty soon, parents of people with disabilities,
school teachers, preachers, social workers got a hold of it and it became dogma.
And they started saying "oh, you must use person-first language,
person with a disability, persone with a disability".
And some other folks, particularly people in the autism community, said:
"What's this distancing thing here? Why are you trying to separate me
from my lived experience?"
Saying person with a disability is kind of like saying person with a suitcase.
You act like I can leave it behind. You act like I should leave it behind.
Well, I don't want to leave it behind. In fact, I'm gonna take that back
and I'm gonna use identity-first language. I am an autistic person.
And other people said I am a disabled person
because they wanted to connect the disability to the larger population.
They wanted to say to politicians and demographers and statisticians
and anybody checking the numbers "there's a whole bunch of us out here
and we're not alone anymore. We're not stuck in isolation,
we're getting out in the street and we're protesting and we're demanding
you pass things like laws like we did in the States 26 years ago,
the Americans with disabilities Act."
So, people who grew up under the ADA, the Americans with disabilities Act,
didn't feel the shame anymore.
They didn't feel the need to distance themselves
from their experience or their condition.
They felt a solidarity with other disabled people
and they knew that there was a strength in coming together to fight
for those things which make the world better for all of us.
That's the thing to be proud of, that's not anything to shy away from.
So, language continues to evolve.
How we think about disability continues to evolve.
So, I have a challenge. I've got the button here that says
Challenge ableism. What is that in French?
<i>Marie-Eve Veilleux</i> Défions le capacitisme.
<i>Lawrence Carter-Long</i> I'm not even gonna try it.
But that, that too. And how do we challenge ableism?
I think it comes back to what I said at the beginning of the talk,
that disability used to be, a long time ago, just a diagnosis.
It doesn't have to stay there. It's not stuck there.
Now, it's a community, it's an identity and a history that seldom gets told.
Well, our mission, our challenge if you want to challenge ableism,
is to find community.
Come together in spaces with other disabled people
and shake things up.
Make that a part of your life. That's one way that we can fight,
we can challenge ableism. By pushing back against the status quo.
What else can we do? Embrace identity.
What happens when we embrace identity is that we push back against erasure.
Somebody saying "oh no, no, you're not really disabled,
I don't see you as disabled" minimizes your experience.
But if we go "yes, in fact, I am, don't separate me from that",
you embrace identity then you force yourself to be seen.
And it's bigger than you. You force your community to be seen.
You force your politicians. You force people that are organizing conferences.
You force them to include you in that mix.
There used to be a phrase, right? There's still a phrase.
It's still around. People are using it.
That was borrowed from AIDS activists that said Nothing about us without us.
Have you heard that one? Nothing about us without us.
Is that used up here? Alright.
And what I find amazing about that is that was around the mid-nineties
when that started being used.
But is sort of assumes, right…
And I think it had to do with what the psychologists were saying,
the social workers were saying or the doctors were saying.
But I think in not so subtle ways, it also assumes
maybe without really thinking about it that there are some things
that are not about us. Right?
Nothing about us without us.
It says sometimes we're not really thinking about…
Maybe there are things that aren't about us.
So, I think in 2016, it's time for an upgrade.
I think we acknowledge the past, we honor our history,
but I think we should put that period a little bit closer to the front.
I think it should be Nothing without us period.
That means any damn thing that we want to do,
any thing that we want a part of, anywhere that we want to be,
we should be there.
There should be no exclusions. Everything should be about us. Right?
Anywhere that disabled people want to be, anywhere that deaf people want to be,
we should be.
And we should not accept anything less.
Plain and simple: nothing without us.
Because, as we know, everything is better when disabled and deaf people are involved.
So why not have us involved?
And then, the third thing that I think we need to do in order to push back
and to challenge ableism is to share and tell and record history.
Make sure that the events that happen where we're together,
where we made shit happen, where we made things change,
where something went down, where we were involved
that other people know about it.
Be loud. Be proud. Be noisy. Write it down. Record it. Say it.
Make sure that others know that there's a history
and that there's a <i>collective</i> history and that we did it together.
Because nothing happens piecemeal.
We've got to think about this and we're got to move it forward.
The only way things change is when we do it as a community.
Not piecemeal. All. Not one of us. All of us.
Stop. Listen. Learn to discern. Distill the misinformation.
Disrupt comfort, priviledge, ignorance.
Don't be afraid to disillusion people.
Shake them up. Make them see the truth.
You might be surprised at what you've been missing.
You might be surprised to <i>discover</i> what you've been missing.
So, disability is not a dirty word.
The disability community is full of strength and power.
And everything that we can do together
is much better than anything that we can do alone.
I thank you.
(<i>Applause</i>)
On avait à l'origine prévu quelques questions.
Par contre, comme la conférence a commencé en retard,
j'ai vu déjà quelques-uns de mes collègues qui se déplacent en fauteuil roulant
devoir quitter parce que c'est quelque chose
qui nous arrive souvent.
On doit planifier nos transports adaptés en donnant une heure de fin
et si un événement se termine plus tard, on doit quitter au milieu.
Donc, pour être certain de reconnaître ce problème
d'organisation de notre société, je ne voulais pas que ces gens-là
manquent quelque chose.
Donc, je vais en fait remercier mes trois panellistes
qui ont donné des présentations extraordinaires.
Je suis très contente qu'on ait pu parler de ces oppressions
et j'espère que en tant que personnes handicapées,
personnes sourdes et alliés, on pourra mettre de l'avant ces concepts-là
dans notre activisme et dans le façonnement de notre nouvelle société.
Et donc, j'aimerais aussi en profiter pour remercier toutes les personnes
qui se sont impliquées dans le comité Handicap, culture sourde
et société sans barrières pour essayer de prendre notre place
dans le Forum social mondial et à vous d'avoir été là
ce soir en si grand nombre.
Je suis extrêmement contente qu'on ait tenu cet événement
et je vous souhaite une très belle soirée.
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