Ari Ne'eman - ASAN 5 Year Anniversary Celebration.wmv

Uploaded by autselfadvocacyntwk on 05.12.2011

without further ado, ari ne'eman
well, thank you jim for that great introduction. i was actually told by a mutual friend that
jim was a little bit nervous here tonight, because he's very used to making fun of paralyzed
veterans, but it's sort of a new experience for him to have to perform before this audience.
i think he did a pretty good job, don't you?
thank you to all of you here tonight, come out to help us celebrate five incredible years.
when we first got started i would not have predicted that we'd be sitting here tonight
at the national press club, five years later, with senior members of the obama administration
who we're going to hear from shortly. and so many friends, allies, and supporters from
the cross-disability community. events like these are, frankly, they're a time to give
thanks. and to a lot of different people. in that spirit, it's my pleasure to start
by thanking some of our sponsors. first freddy mack, who not only made a financial investment
in the autistic community, but also a practical one by choosing to partner with asan to launch
a new internship program for recent autistic college graduates. freddy mack is not only
putting its money where its mouth is, but putting its hiring practices there as well
which is absolutely crucial in opening the doors to greater diversity in the work force.
so absolutely fantastic. i'd also like to thank and recognize our other sponsors reflected
in our program. their support helps ensure that asan will be able to continue our important
work in the coming year. and in addition let me acknowledge a sponsor who is not listed
in the program, the mitsubishi electric america foundation, which has just recently pledged
to generally support our new autism campus inclusion initiative in 2012. thank you mitsubishi.
but events like tonight, frankly, they call on us to do more than just give thanks. they
call on us to reflect a little bit, ask some important questions. and, you know, most important
question to scholars, philosophers, and folks lying awake at night, is why are we here?
what are we doing here? what is this all about? and i don't just mean why are we here at the
national press club tonight, but why is the self-advocacy movement important. why is it
important that people with disabilities talk for ourselves, and that we fight against that
which is about us without us. why does self-advocacy matter? when scott robertson and i--and by
the way asan's co-founder scott robertson is here in the audience--co-found--
when scott and i co-founded asan five years ago, the national conversation on autism was
frankly very different from what it was today. most people's ideas of autism were shaped
by rain man, and various public service announcements promoting pity and fear, and television shows
that contracted what i like to call very special episode syndrome.
some of you may be familiar with very special episode syndrome. it's a very, very concerning
public health epidemic upon which a television show contracts a disabled character for an
episode or two. fortunately they're usually able to kick the habit pretty quickly, sending
us back to the institution, or the school where we belong, and usually the non-disabled
characters learn a very important lesson along the way.
it's a great frustration of mine. but when folks talked about autistic people then, and
still often but we're making progress, they often assumed that they're talking about children.
and because of that a lot of people told us when we were getting started that frankly
the time wasn't right for an advocacy organization run by and for autistic people. they said,
you know, the public and the autism community, they're not ready. you should wait a while,
you should give them more time, they'll include you when they're feeling a little bit more
comfortable. when they get around to it. you know, when they're sure. and the past was
very daunting. it seems like nobody had ever--had done this before, although we later learned
that was not the case. and the odds were against us. so, you know, under other circumstances
we might have taken that advice. but we didn't, and i want to tell you why. before we started
asan, i remember reading an email from a young autistic woman who was writing to an online
support group she belonged to after a singularly horrific day she had had. in the morning,
she went to an autism fundraiser where the organizers spent their time talking about
how people should give in order to help these poor, unfortunate souls. people like her who
could never hold a job, they said, never live independently, never have any friends, never
be included in their communities. in the afternoon, she decided, well i've had enough of these
folks, i'm gonna look up new autism organizations. she discovered that one of the leading autism
groups in her country, in canada, had recently testified to the canadian parliament saying
that autism is worse than cancer because the person with autism has a normal life span.
[sounds of disgust]
and, and, finally to try and unwind in the evening, she decided to watch some television.
and of course she promptly discovered in a commercial break, a public service announcement
comparing the odds of having an autistic child--a child like her--with the odds of being in
a fatal car accident. and after describing the various elements of this rather unfortunate
day, she, she wrote in her email, why do they hate us so much? what did we ever do to these
people? and, you know, i understand what she meant perfectly. as a matter of fact, i'm
sure i've said the exact same thing many, many times growing up, and probably even still
today. and i say that knowing perfectly well that it isn't about hate. i know that even
those that we disagree with have the best of intentions. i know that even the most vile
and fear-mongering advertisement or fundraising effort is, in some perverse way, motivated
by love. but what became immediately evident at that point, and what drove us to found
asan, was that good intentions and love were quite frankly just not enough. that even love,
in the absence of empathy, can be harmful. and that when people that you talk about,
or set policy on, or conduct research regarding, are not in the room, even good people feel
licensed to say horrible things. you cannot help people through pity and fear. and so
we decided that an organization was needed. that a unified voice of autistic people speaking
for ourselves was needed. and asan grew, supported by autistic people, and our allies in the
parent and professional community. people have saw our mission and values as their own.
but we needed other partners. we needed to find other people who would support us. we
were--and we are--a new community. we needed to figure out where are we going to get friends
when the situation looks hostile politically and practically for us. and more importantly,
how are we going to define ourselves not just by what we didn't like about how others approached
us, but also, frankly, by speaking to an autistic experience in this country and this world
in positive terms. and it's very interesting, we found the answer to both of those things
in the same place. the broader disability rights movement. we were not the first group
of people, we soon discovered, with disabilities
who were not happy with, you know, the dominant narrative about us. either about disability
in general or our particular disability. i remember the first time i spoke to the folks
over at aapd
-whoo! aapd!
and adapt, and so on, yes! they're here tonight! and they were dealing with the same issues
that we were. and, you know, it took us a bit of time to realize it, but soon it was
clear that--i think everyone's always surprised when they learned this about themselves--we
weren't as special as we thought we were.
and frankly we were thrilled to learn that!
that there was this whole movement, and other organizations, other--this broader community
of people that we could draw on for strength. and we came to see our work through the eyes
of past disability rights struggles. and we knew we weren't alone. names like ed roberts.
names like justin dart. and judy cuman. and marka bristo. and jacobis pengrove. judy chamberlain.
and countless others!
spoke about history of leadership by and for disabled people that went further back than
we had ever dreamed of. disabled people who have brought power and hope to those of us
who are too often written off by society. and in the process of doing so, perhaps more
importantly, built a sense of kinship and community that went beyond any particular
advocacy campaign or initiative. i'm not a wheelchair user. but when i see pictures of
those who are crawling up the capital steps to fight for the passage of the ada, i know
that they were fighting for my rights as much as they were fighting for anyone else's. i'm
not deaf, but when i hear and when i read about the deaf president now protests at gallaudet
i see something that speaks to me as a disabled person in a very personal way. there is a
broader disabled experience in america, and we as autistic people are part of it. now
the prejudices and ignorance that i spoke of earlier, it hasn't gone away. but we're
fighting it, and we're making progress. not only that, more importantly, we're offering
an alternative. we're finding ways to make real progress in the practical challenges
that face us. for example, healthcare access. asan is partnering with several major research
universities to utilize community based participatory research methodology. it's great technique
in which we're involved not just as test subjects but as partners in the research going on about
us, to come up with new tools for physicians on improving healthcare access experiences.
we're creating resources written by and for us, like our new navigating college handbook,
which i should note is available for purchase
[laughter, applause]
but we're building--more importantly--we are building a sense of community which is what
any minority group--and we are, just like any other minority group--we have the same
legitimacy, and we should have the same rights. any minority group looks to a sense of community
to make it through tough times. i want to close by sharing a quote from ed roberts,
the father of the independent living movement. talking in a speech he gave upon the victory
of the 504 sitters. i bring it up not just because ed roberts was a fantastic orator,
and not just because ed roberts and the others who participated in the 504 sit-in, quite
frankly, gave to our generation a gift that i fear that we may work the rest of our lives
without ever being able to repay. but i say because speaking beyond being the president
of asan or presidential appointee or anything else i've had the honor to be in the last
five years, when i was a child in the special education system and i was looking for a source
of hope, and when times were darkest for me, i discovered these words. and they made all
the difference in giving me the strength to speak on my own behalf, but more importantly
work for the rights of others to do the same. quote, we have begun to ensure future for
ourselves, and a future for the millions of young people with disabilities who i think
will find the new world as they begin to grow up. who may not have to suffer the kinds of
discrimination that we have suffered in our own lives, but that if they do suffer it,
they will be strong, and they will fight back. and that's the greatest example that we, who
are considered the weakest, the most helpless people in our society, are the strongest,
and will not tolerate segregation. will not tolerate a society which sees us as less than
whole people. but that we will together with our friends reshape the image that this society
has of us. we are no longer asking for charity. we are demanding our rights.