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First Published Wednesday, 6 May 2009


Jacobus ten Broek was a founder of the National Federation for the Blind — one of the first organizations of people with disabilities to insist that those with disabilities sit on the board and direct the organization.


On Friday, April 17th, 2009, I delivered the following comments to the
National Federation of the Blind’s Disability Law Symposium. A recording of
the speech is available
here<http://www.nfb.org/images/nfb/Audio/JTB_Law_Symposium/2009/2009%20tenBroek%20Law%20Symposium/2009_JTB_Law_Symposium_Keynote.mp3>on
mp3 and a link to the rest of the symposium materials can be found at:
http://www.nfb.org/nfb/Law_Symposium.asp

The past half-century has seen a great proliferation in new kinds of
conversation about rights. Once primarily relevant in the context of
criminal justice and property disputes, rights-based discourses have
expanded their scope throughout our society. We have civil rights, human
rights, women’s rights, disability rights, immigrant rights, GLBT rights,
commercial rights, social rights, privacy rights, animal rights, children’s
rights, student rights, parental rights and countless more. Though we may
not all agree on the extent or even legitimacy of them, it cannot be
disputed that we have broadened our global conception of the role for this
concept called rights in our social, legal, economic, policy and societal
frameworks. And yet, at the same time as we have updated the role of
rights-based conversations in our society, we remain with some very obsolete
ideas about where rights come from. This holds us back.


We go out to the world and we tell them in so many ways that it is time for
our rights to be realized. We talk about inclusion, we talk about
integration, we talk about access, but when we are asked why, our answers
are typically phrased in the language of either cost-benefit or desperate
need. The one turns our civil rights struggle into a conversation on policy
technicalities; the other evokes the very charity-oriented model of
disability support that we have been trying to escape. Neither type of
response brings the understanding and the knowledge necessary to communicate
both the nature *and the urgency *of our priorities because both talk about
rights without talking about where they derive. To legitimize our rights, we
have to explain where they are from and so show that they do exist in the
ways we talk about.


But where do rights derive? That is the question. The enlightenment
political philosophy that our country was based on put forward the idea of a
social contract, arrived at by individuals in a state of anarchy,
determining to place some of their G-d-given natural rights into a central
government for the purpose of securing the remaining ones. This theory
carries with it much charm – it fits with our nation’s philosophy of
government by the people, for the people, it recognizes and respects rights
as inalienable, not temporal whims to be overridden by the first tyrant with
a passing fancy. Unfortunately, it is anachronistic and also inaccurate.
There has never been a state of nature and our modern ideas of rights go far
beyond the negative right protections against government intervention that
are all this model allows for. Our community would not be the only one left
out by such a limited conception of rights, but we certainly would be one of
the first and one of the worst served.


What does that leave us? Where do rights come from? The United States
Declaration of Independence says that men are “endowed by their creator with
certain unalienable rights”. I believe that to be true – for both men and
women, it should be noted. And yet, for our purposes, this does not help us
very much. Because the very reason we seek a source for rights in the first
place is to help us understand what they are. Barring a theocracy tied to a
particular holy text, the belief that rights are divinely inspired does not
shed much light on their nature.


You, the people here gathered today, represent some of the most important
leaders of a movement devoted to securing and advancing recognition of the
rights of a segment of the global population that has been denied them,
perhaps more extensively and more pervasively than any other. For
generations upon generations the very idea that our population was
discriminated against, was deprived of rights was not even on the agenda.
Disability was – and in so many senses, still is perceived – as a problem
that should be solved by charity and whose persistence could be blamed only
on the lack of sufficient humanitarian instincts on the part of the public
and the as yet too slow progression of medical science. Disability rights
were not on the agenda as far as rights crusaders were concerned – that was
a province for those who ministered to the poor unfortunates of the world,
the sad accidents, the there but for the grace of G-d go I angels who gave
of themselves and found meaning in those tragic burdens.


Then things started to change – not so much with the world, though it is
starting, slowly and not yet by any means surely, but with ourselves. We
began not to conceive of our existences as mistakes, our misfortunes as
G-d’s will and our utility limited to being gracious for that which hath
been given us. We got activated. We got interested. We got angry. We looked
out on the world and found the blame for our misfortune lied not with G-d or
with medical defects but with a society that was built up for centuries upon
centuries without any thought to the prospect that people like us might live
in it. In that moment – and we have each found it at different points in our
lives – but in that moment, we saw power abused, we saw injustice – in
short, we saw wrongs and so our rights were born. In that moment – that
epiphany – the world changed for us, and disability rights were born.


In my own community – that of Autistic adults and youth, a group that has
been targeted with an unprecedented wave of fear and pity-mongering as of
late by entities that unjustly attempt to speak on our behalf – this
paradigm shift is motivated by multiple sources. At one level, the socially
constructed nature of at least some of our difficulties is a simple
conclusion to reach, as many of our challenges are social in nature. At
another level, our community’s outrage at lack of representation in the
national conversation about us brought us to the disability rights outlook.
This is represented for us in the neurodiversity movement, which seeks to
recognize our neurology as legitimate and change the autism conversation
from one of cures and eugenics to one of quality of life and equality of
opportunity. Our movement for what we desire – independent, understanding,
opportunity and respect – is a response to attempts to force on us what we
oppose – dependency, isolation, pity and loss of control over our own lives.


The very foundation of our legal system comes from something remarkably
similar. Why do we guarantee freedom of speech, freedom of petition, freedom
of assembly, much less the right to a speedy and public trial or to not have
troops quartered in ones home? It is a direct outgrowth of our experiences
with the British crown and it was only once we had that experience with
injustice that we could properly understand what justice looked like. A
quick look across history will reveal much the same thing. Our national
experience with slavery imprinted us with the right to freedom from forced
servitude on the basis of race. The gains of the civil rights movement were
not just the result of superior organization and a superb moral cause, they
were our nation’s recognition – still partial – of the legacy of lynching,
segregation and racism. Anti-Semitism was driven from the country club to
the conspiracy theory fringe when the knowledge of the Holocaust came into
our homes. Gay rights have advanced because of public awareness of brutal
hate crimes such as the torture and murder of Matthew Shepard. To quote
Harvard’s Alan Dershowitz, rights come from wrongs.


Let us be clear. This does not mean that we are purchasing social goods with
our victimhood. There are those who would put it in those terms – the people
who claim that we are owed something not because it is objectively just for
us to receive it but because of our community having been deprived something
else that should justly have been ours. Many aspects of the disability
policy framework built in decades past are built on that idea, the
retributive model of disability. This is the concept behind much of our
Social Security Disability infrastructure. The result of it has, in fact,
been a form of inaccessible infrastructure unto itself, with individuals
forced to swear, even as many are only just starting their lives, that they
are incapable of ever working in meaningful employment in order for them to
gain the government support necessary to survive. This system was built on
old assumptions of dependency – it was built for the conversation about
need, not for the one about rights and about justice. It is one of many
examples of the kind of infrastructure we must radically alter if we hope to
bring the conversation about disability into the 21st century. Another
example can be found in the judicial decisions that necessitated the
recently signed into law ADA Amendments Act. For what reason did the
disability community have to, eighteen years after the ADA first came into
effect, work to pass it once again for a considerable portion of the
disability population? It is because the judges that interpreted the narrow
definition of disability that the legislation sought to fix saw the ADA as a
law about charity – specifically, charity for the most severely impaired –
not justice for all those who are being discriminated against.


What does the idea of rights coming from wrongs imply then, if not
compensation for having been victimized? It should serve to show us what
direction our advocacy should take and, much more importantly, it should
show the public reason why the goals our advocacy aspires to realize are
important. For too long, our civil rights movement has been one by stealth.
Even as we built tremendous political power and created civil rights laws
and social welfare programs, we often did it not by making a credible claim
that this is the way the world should be, but by playing on the idea that
society should show “compassion” and “pity” for the disabled. This was not
entirely our fault. We’re dealing with a media and, as a result, a general
public that has not even begun to understand the nature and implications of
disability rights. But regardless of why we are here, we still have to deal
with the results of having won our legal and political victories while
bypassing the social ones that should have come first. The consequence is
that our movement and all the progress it has brought is still seen, in most
circles, as one of charity or worse still as a stopgap until – be it by
eugenics, euthanasia or medical cures – disability is no longer a part of
the human experience. This is what Dr. tenBroek was referring to when he
wrote about our “right to live in the world” and the failure of the broader
community to accept that right as of yet.


This knowledge places our struggle for recognition of even our victories on
the civil rights front in context. Why, almost twenty years after the ADA,
do we still see such extensive discrimination and lack of access in terms of
employment and places of public accommodation? Why, ten years after
Olmstead, do we still see institutions and nursing homes that are near
impossible for our people to escape? Why, after Deaf President Now and many
similar such actions are so many disability organizations groups that speak
about us, without us? Why after the MDA Labor Day Telethon and Ransom Notes
and countless other examples of unethical fundraising and advertising
tactics do we still see media campaigns that devalue our very personhood and
cast us as less than human?


The answer is because when we come to the public with our demands of rights
and speak those rights unto the world with all the passion of that
aforementioned epiphany, the world only sees part of the message. They see
the demand for rights but not the wrongs from which the rights were born.
They look at the individual who uses a wheelchair who cannot enter an
inaccessible building or the Autistic student who, like I myself have been,
is excluded from his home school and what they see is not an inaccessible
infrastructure but needy, pitiful dependents. And they may meet our
immediate demands for laws and public programs, as charity is still seen as
necessary and good and proper by so many well-meaning souls. However, the
enforcement of those laws and the implementation of those programs will
never be as urgent or as meaningful a priority to them as it is for the
“true” civil rights movements.


To them, this is still very much a conversation about need – not injustice.
This is not a petty distinction. To have a conversation about justice is to
call for a civil rights movement that all members of the human community
should feel a moral obligation to join and support. To have a conversation
about mere need is to call only for charity conducted mostly by those who
usually do not feel that need themselves and have their own ideas about the
manner in which it should be fulfilled.


I am reminded, by way of example, of an experience my group, the Autistic
Self Advocacy Network, had when leading a protest against offensive
advertisements depicting children with disabilities as kidnap victims posted
across New York City. The campaign, called “Ransom Notes”, consisted of faux
ransom notes from the disabilities that had taken the normal children that
were supposedly once in the bodies of now disabled young people. We
mobilized thousands of Autistic people and those with other disabilities,
brought support from two dozen national and regional disability rights
organizations and also garnered some support from sympathetic segments of
the parent and professional community. Finally, after thousands of phone
calls and e-mails, our story began to hit the media – with the UPI headline,
“Ads anger parents of autistic children.”


Of course the story was accurately reported in other news sources and we did
succeed in getting the ads withdrawn, but there is a certain sense of
frustration over the lack of agency that is allowed our community. Even when
every single one of the organizations doing press outreach and explaining
our case to the public were consumer-controlled disability rights
organizations, the only available paradigm that the media could place this
in was one in which we were only passive onlookers as our parents fought on
our behalf. Every disability group and most disability rights activists have
similar stories.


And so even as we spend more money and more political will on disability
issues than we ever have before, we are limited in what we can achieve
because the conversation is not one about justice, it is not one about
recognizing wrongs and rectifying the institutions that continue to commit
them. It isn’t about putting power in the hands of the people who have been
deprived it. It is about charity and dependency and all of those other
things that infantilize and marginalize us, controlled by those who speak
for us on our behalf and without our permission.


The average member of the public does not know about *Buck v. Bell *or the
tens of thousands of Americans with disabilities or perceived to have
disabilities who were involuntarily sterilized as a result of the eugenics
movement. They do not know about Willowbrook or the countless Americans with
disabilities who have had to live out their whole lives in institutions –
much less the many Americans with disabilities who still must suffer this
segregation. They don’t know about the Judge Rotenberg Center or school
abuse through aversives, restraint and seclusion. The people in charge of
our futures do not understand our history. They don’t see ADAPT calling out,
“We Will Ride” or “Free Our People”. They don’t see Deaf President Now at
Gallaudet. All they see is the Jerry Lewis MDA telethon or the Autism Speaks
fear-mongering television advertisements or Jenny McCarthy and Jim Carrey
promoting pseudo-scientific claims of pharmaceutical company-government
conspiracies to poison their children into autism with vaccines. It isn’t
just because the money and the media power is in the hands of those other
groups. It’s because the public narrative about disability doesn’t know
where to place groups like ASAN and the NFB and a movement like ours. The
ideas about dependency run so deep, the charity and victim models are so
ingrained, that the response of most reporters and members of the general
public to our message is one of cognitive dissonance before pigeonholing our
movement into whatever disability narrative is easiest for them to classify
us into. Maybe this is why the disability movement has not yet had our
Rodney King or Matthew Shepard moment – since the concept of disabled people
as suffering is a natural, normal, expected thing in the eyes of the media
and the public, suffering brought on from discrimination or abuse is simply
placed into the same, “unfortunate but unavoidable” category as all
disability-related misfortunes tend to be.


A perfect example of this can be found in the Supreme Court’s *Alabama v.
Garrett* decision, were the court struck down Congress’s attempt to abrogate
the sovereign immunity of the states from damages under ADA lawsuits on the
grounds that there was insufficient evidence to “identify a pattern of
irrational state discrimination in employment against the disabled.” To a
slim majority of the Justices of the Supreme Court, disability
discrimination is not the result of having built infrastructures for only a
portion of the population but a perfectly rational act that the equal
protection clause cannot be expected to serve as a remedy for. To quote the
Court, “the Fourteenth Amendment does not require States to make special
accommodations for the disabled, so long as their actions toward such
individuals are rational. They could quite hardheadedly–and perhaps
hardheartedly–hold to job-qualification requirements which do not make
allowance for the disabled. If special accommodations for the disabled are
to be required, they have to come from positive law and not through the
Equal Protection Clause.” Here, once again, disability rights are not
matters of equal protection given to full citizens under the law, they are
portrayed as matters of charity that good hearted people engage in.


The good news is that this does show us what our next steps should be. It
explains the biggest obstacle for the disability rights movement’s ascension
to the next level of rights discourse in America – placing us on par with
other minority groups based on race, religion, sexual orientation and
similar attributes. That obstacle is the failure to take our message to the
public. I’m pleased by the progress that we’re seeing in that direction in
respect to the growing Disability History movement, attempting to
incorporate the history of people with disabilities and our civil rights
struggle into the classroom just as the experiences of other American
minority groups has been incorporated. In many ways, finding a way to cement
our past into the American national narrative will be the best way to ensure
we have a future. We must carry that message forward, but to succeed we need
our President and Congressional representatives to join us in making that
case to the American people. Furthermore, it is important for us to
memorialize and to educate the public about the achievements of men such as
Dr. Jacobeus tenBroek as well as other disability leaders like Ed Roberts or
Justin Dart not just to pay respect to those who have gone before but to
show the world that we do have a history of taking control over our own
lives and that there is a real and legitimate civil rights movement of, by
and for people with disabilities. To quote Ed Roberts, “the greatest lesson
of the civil rights movement is that the moment you let others speak for
you, you lose.” Showing the world those parts of our past where we have
confronted the wrongs that are being committed against us and restored
agency to our community is one way for us to take back our voice.


Another thing that we must do is to begin to confront and to confront
vigorously those organizations and groups that speak about us, without us.
When Jerry Lewis or VOR or Autism Speaks go to the public and claim to
represent the needs and perspectives of the disability community with their
calls for more pity, more segregation, more eugenics and more distance from
our dream of being recognized as equal citizens in this society, they
perpetrate upon us an obscenity. This obscenity nevertheless has use in that
teaches us about how important to the disability rights movement it is for
us to take control of our own message and our own community. We must
organize not just around laws but around the public conversation on
disability, confronting those corporate donors and political infrastructures
that give support to these repressive, fear-mongering groups that challenge
our right to live in this world. To quote Dr. tenBroek himself, *“there
are…large and powerful agencies abroad in the land, considerable in number
and vast in influence, which remain hostile to our movement in thought, in
speech, and in action. Under the guise of professionalism, [they] would
perpetuate colonialism. [Their] philosophy is a throwback to the age of the
silent client, before the revolution in welfare and civil rights, which
converted the client into an active and vocal partner in the programming and
dispensing of services. In…[their]…lofty disregard of the organized blind as
the voice of those to be served, [they] betray bureaucratic bias that
is…[an]…image of the blind client not as a person to be  served  but as a
defective mechanism to be serviced.”* The same could be said about many
similar groups that speak about us, without us in many disability
communities.


* *


Finally, in order to communicate our message to the public, we must also
realize that the most effective social change comes not from activism but
from individuals. For the public to understand that the disability message
is a civil rights message, they must hear that message from their friends,
their family members and their co-workers with disabilities. Beyond this,
for us to accomplish that, we must succeed in broadening the base of the
disability rights movement to encompass a broader scope of people with
disabilities in general. There remain too many people with disabilities who
do not yet have the chance to participate in our community. We must broaden
our community and give every disabled person access to the disability
culture and perspective.


I’d like to end by quoting American philosopher Henry David Thoreau, who
said, “You have built castles in the clouds, now you must build the
foundation underneath them.” As we talk about how to imprint the American
public with the meaning and message of the disability rights movement, we
talk about what must be done to build the foundations that will show that
our vision is no dream. This is what we must do. This is what we can do.
This is what we will do. Thank you for your time and I look forward to
working with all of you to bring this hope into reality.




Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530


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