Olin Cover Photo on Johns Hopkins History of Medicine Bulletin

Disabled and Proud by Tom Olin

Disabled and Proud by Tom Olin

Johns Hopkins University has selected the photo “Disabled and Proud” from the Olin Collection for the cover of their “Bulletin of the History of Medicine”-Volume 87, Number 4, Winter 2013. Johns Hopkin’s purchased the photo from social documentarian Tom Olin. Olin is director of DRC. His photos are part of the Smithsonian Collection and have appeared in numerous books, magazines and newspapers, including The Washington Post. Olin spent decades dedicated to documenting the grassroots history of the disability movement.

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Social Justice and Ableist Language Matters

Here at DRC, we don’t usually reprint full blog posts. I suppose that is because we are full of our own political opinions and focus largely on action oriented press releases or important disability rights controversies. Language matters and that is SO clearly explained here that one hopes even non-disabled non allies can comprehend and “grok” it. DRC is grateful to Rachel Cohen-Rottenberg for this and other blog postings at Disability and Representation:

Doing Social Justice: Thoughts on Ableist Language and Why It Matters
September 14, 2013 at 8:00 am 13 comments
The economy has been crippled by dept.

You’d have to be insane to want to invade Syria.

They’re just blind to the suffering of other people.

Only a moron would believe that.

Disability metaphors abound in our culture, and they exist almost entirely as pejoratives. You see something wrong? Compare it to a disabled body or mind: Paralyzed. Lame. Crippled. Schizophrenic. Diseased. Sick. Want to launch an insult? The words are seemingly endless: Deaf. Dumb. Blind. Idiot. Moron. Imbecile. Crazy. Insane. Retard. Lunatic. Psycho. Spaz.

I see these terms everywhere: in comment threads on major news stories, on social justice sites, in everyday speech. These words seem so “natural” to people that they go uncritiqued a great deal of the time. I tend to remark on this kind of speech wherever I see it. In some very rare places, my critique is welcome. In most places, it is not.

When a critique of language that makes reference to disability is not welcome, it is nearly inevitable that, as a disabled person, I am not welcome either. I might be welcome as an activist, but not as a disabled activist. I might be welcome as an ally, but not as a disabled ally. I might be welcome as a parent, but not as a disabled parent. That’s a lot like being welcomed as an activist, and as an ally, and as a parent, but not as a woman or as a Jew.

Many people have questions about why ableist speech matters, so I’ll be addressing those questions here. Please feel free to raise others.

1. Why are you harping so much on words, anyway? Don’t we have more important things to worry about?

I am always very curious about those who believe that words are “only” words — as though they do not have tremendous power. Those of us who use words understand the world through them. We use words to construct frameworks with which we understand experience. Every time we speak or write, we are telling a story; every time we listen or read, we are hearing one. No one lives without entering into these stories about their fellow human beings. As Arthur Frank writes:

“Stories work with people, for people, and always stories work on people, affecting what people are able to see as real as possible, and as worth doing or best avoided. What is it about stories – what are their particularities – that enables them to work as they do? More than mere curiosity is at stake in this question, because human life depends on the stories we tell: the sense of self that those stories impart, the relationships constructed around shared stories, and the sense of purpose that stories both propose and foreclose.” (Frank 2010, 3)

The stories that disability metaphors tell are deeply problematic, deeply destructive, and deeply resonant of the kinds of violence and oppression that disabled people have faced over the course of many centuries. They perpetuate negative and disempowering views of disabled people, and these views wind their ways into all of the things that most people feel are more important. If a culture’s language is full of pejorative metaphors about a group of people, that culture is not going to see those people as fully entitled to the same housing, employment, medical care, education, access, and inclusion as people in a more favored group.

2. What if a word no longer has the same meaning it once did? What’s wrong with using it in that case?

Ah yes. The etymology argument. When people argue word meanings, it generally happens in a particular (and largely unstated) context. With regard to ableist metaphors, people argue that certain meanings are “obsolete,” but such assertions fail to note the ways in which these “obsolete” words resonate for people in marginalized groups.

For example, I see this argument a great deal around the word moron, which used to be a clinical term for people with an intellectual disability. I have a great-aunt who had this label and was warehoused in state hospitals for her brief 25 years of life. So when I see this word, it resonates through history. I remember all of the people with this designation who lived and died in state schools and state mental hospitals under conditions of extreme abuse, extreme degradation, extreme poverty, extreme neglect, and extreme suffering from disease and malnutrition. My great-aunt lay dying of tuberculosis for 10 months under those conditions in a state mental hospital. The term moron was used to oppress human beings like her, many of whom are still in the living memory of those of us who have come after.

Moron — and related terms, like imbecile and idiot – may no longer be used clinically, but their clinical use is not the issue. They were terms of oppression, and every time someone uses one without respect for the history of disabled people, they disrespect the memory of the people who had to carry those terms to their graves.

3. What’s wrong with using bodies as metaphors, anyway?

Think about it this way: Consider that you’re a woman walking down the street, and someone makes an unwanted commentary on your body. Suppose that the person looks at you in your favorite dress, with your hair all done up, and tells you that you are “as fat as a pig.” Is your body public property to be commented upon at will? Are others allowed to make use of it — in their language, in your hearing, without your permission? Or is that a form of objectification and disrespect?

In the same way that a stranger should not appropriate your body for his commentary, you should not appropriate my disabled body — which is, after all, mine and not yours — for your political writing or social commentary. A disabled body should not appear in articles about how lame that sexist movie is or how insane racism is. A disabled body should be no more available for commentary than a nondisabled one.

The core problem with using a body as a metaphor is that people actually live in bodies. We are not just paralyzed legs, or deaf ears, or blind eyes. When we become reduced to our disabilities, others very quickly forget that there are people involved here. We are no longer seen as whole, living, breathing human beings. Our bodies have simply been put into the service of your cause without our permission.

4. Aren’t some bodies better than others? What’s wrong with language that expresses that?

I always find it extraordinary that people who have been oppressed on the basis their physical differences — how their bodies look and work — can still hold to the idea that some bodies are better than others. Perhaps there is something in the human mind that absolutely must project wrongness onto some kind of Other so that everyone else can feel whole and free. In the culture I live in, disabled bodies often fit the bill.

A great deal of this projection betrays a tremendous ignorance about disability. I have seen people defend using mental disabilities as a metaphor by positing that all mentally disabled people are divorced from reality when, in fact, very few mental disabilities involve delusions. I have seen people use schizophrenic to describe a state of being divided into separate people, when schizophrenia has nothing to do with multiplicity at all. I have seen people refer to blindness as a total inability to see, when many blind people have some sight. I have seen people refer to deafness as being locked into an isolation chamber when, in fact, deaf people speak with their hands and listen with their eyes (if they are sighted) or with their hands (if they are not).

Underlying this ignorance, of course, is an outsider’s view of disability as a Bad Thing. Our culture is rife with this idea, and most people take it absolutely for granted. Even people who refuse to essentialize anything else about human life will essentialize disability in this way. Such people play right into the social narrative that disability is pitiful, scary, and tragic. But those of us who inhabit disabled bodies have learned something essential: disability is what bodies do. They all change. They are all vulnerable. They all become disabled at some point. That is neither a Good Thing nor a Bad Thing. It is just an essential fact of human life.

I neither love nor hate my disabilities. They are what they are. They are neither tragic nor wonderful, metaphor nor object lesson.

5. Disabled people aren’t really oppressed. Are they?

Yes, disabled people are members of an oppressed group, and disability rights are a civil rights issue. Disabled people are assaulted at higher rates, live in poverty at higher rates, and are unemployed at higher rates than nondisabled people. We face widespread exclusion, discrimination, and human rights violations. For an example of what some of the issues are, please see the handy Bingo card I’ve created, and then take some time over at the Disability Social History Project.

6. If my disabled friend says it’s okay to use these words, doesn’t that make it all right to use them?

Please don’t make any one of us the authority on language. It should go without saying, but think for yourself about the impact of the language you’re using. If you stop using a word because someone told you to, you’re doing it wrong. It’s much better if you understand why.

7. I don’t know why we all have to be so careful about giving offense. Shouldn’t people just grow thicker skins?

For me, it is not a question of personal offense, but of political and social impact. If you routinely use disability slurs, you are adding to a narrative that says that disabled people are wrong, broken, dangerous, pitiful, and tragic. That does not serve us.

8. Aren’t you just a member of the PC police trying to take away my First Amendment rights?

No. The First Amendment protects you from government interference in free speech. It does not protect you from criticism about the words you use.

9. Aren’t you playing Oppression Olympics here?

No. I’ve never said that one form of oppression is worse than another, and I never will. In fact, I am asking that people who are marginalized on the basis of the appearance or functioning of their bodies — on the basis of gender identity, race, ethnicity, sexual orientation, class, size, and disability — get together and talk about the ways in which these oppressions weave through one another and support one another.

If you do not want disability used against your group, start thinking about what you’re doing to reinforce ableism in your own speech. If you do not want people of color to be called feeble-minded, or women to be called weak, or LGBT people to be called freaks, or fat people to be called diseased, or working-class people to be called stupid — all of which are disability slurs — then the solution isn’t to try to distance yourself from us and say, No! We are not disabled like you! The solution is to make common cause with us and say, There is nothing wrong with being disabled, and we are proud to stand with you.

10. Why can’t we use disability slurs when the target is actually a nondisabled person?

To my knowledge, the president of the United States is not mentally disabled, and yet his policies have been called crazy and insane. Most Hollywood films are made by people without mobility issues, and yet people call their films lame. Someone who has no consciousness of racism or homophobia will be called blind or deaf to the issues, and yet, such lack of consciousness runs rampant among nondisabled people.

So why associate something with a disability when it’s what nondisabled people do every single day of the week? As far as I can see, lousy foreign policy, lousy Hollywood films, and lousy comments about race and sexual orientation are by far the province of so-called Normal People.

So come on, Normal People. Start owning up to what’s yours. And please remember that we disabled folks are people, not metaphors in the service of your cause.

References

Disability Social History Project. http://www.disabilityhistory.org. Accessed September 14, 2013.

Facebook. “Disability and Representation.” https://www.facebook.com/photo.php?fbid=638151876196123&set=a.535870946424217.126038.447484845262828&type=1. Accessed September 14, 2013.

Frank, Arthur W. Letting Stories Breathe: A Socio-Narratology. Chicago, IL: The University of Chicago Press, 2010.

© 2013 by Rachel Cohen-Rottenberg

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Disability Grassroots Meets Times Square: Not Dead Yet/ADAPT Ad

Not Dead Yet and ADAPT are two disability rights groups that have remained true to their roots and community organizing principles. So it is with great delight and excitement that DRC posts their press release about the SUPERSCREEN ADS IN TIMES SQUARE. Talk about breaking news! Here is their press release explaining this earth shaking journey into the world of big media. BRAVO to our beloved leaders who made this happen.

ADAPT AND NOT DEAD YET ANNOUNCE A UNIQUE OPPORTUNITY FOR COMMUNICATING ESSENTIAL MESSAGES FROM THE DISABILITY COMMUNITY TO THE GENERAL PUBLIC.

ADAPT AND Not Dead Yet, working in partnership, have created a unique opportunity to communicate three vital messages via the Superscreen in New York Times Square. The messages–Life, because we’re not better off dead, Liberty, in our homes, not nursing homes, and The pursuit of happiness—join our struggle at http://www.adapt.org and http://www.notdeadyet.org–also smash devastating myths that have historically prevented many individuals with disabilities from enjoying our full rights and an equal place in our communities.

These messages are displayed in a ten second video and will run once an hour, 18 hours a day for the next three months.

The first message avows that life, with or without disabilities, is worth living. Many misguided individuals have promulgated so-called “assisted-suicide” and euthanasia laws throughout the world that discriminate against elderly and disabled people by creating a state supported path to death. An all too common belief that a person is better off dead than severely disabled has been enacted as public policy. In Oregon, doctors report that people ask for assisted suicide because they feel like a burden on others, indicating that they may have even felt a duty to end their lives and relieve society of the “burden” of their existence. In addition, many individuals with newly acquired disabilities have been assisted to die before being provided an opportunity to experience all that life with a disability can offer. Not Dead Yet challenges the social message that we are “better dead than disabled” and that society is better off without us.

The second message asserts that the quality of our lives is greatly enhanced when we are allowed the liberty to live in our own homes and apartments, supported by attendants that we hire and direct. We view nursing homes as a type of segregation and incarceration that violate our civil rights, as affirmed in the Supreme Court’s Olmstead decision.

The third message calls upon everyone—with or without disabilities—to join us in our historic battle for our civil rights. We are not helpless and we neither need nor want pity. We need equal access to jobs, businesses, places of entertainment, government offices and our own homes. Everyone may at any time join our ranks by acquiring a disability. Join us now and ensure that we will all have quality lives no matter what the future may hold.

Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination.

ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.

For more information on our organizations, visit http://www.adapt.org and http://www.notdeadyet.org.

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Olin Photo to Be Published in American Government Book

Soomo Publishing has purchased the rights to use a disability rights photo from the Tom Olin Collection in their text “Central Ideas in American Government. The photo is of the famous pre ADA action by ADAPT, The Capitol Crawl.

It’s great to see disability rights joining mainstream education and those great photos getting broad distribution.

If you are interested in purchasing a photo from The Olin Collection, contact The Disability Rights Center.

94.2CapitalCrawl_2

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Atrocious Discrimination Against Students With Disabilities in NYC

Here at DRC, we have to share Michelle Daimant’s important article on the NYC public school’s misuse of emergency room’s as a timeout room. It is enough to upset your stomach and chill you to your toes. Michelle writes for Disability Scoop. See more of her work at

Photo by Tom Olin

Photo by Tom Olin

Schools Allegedly Using Emergency Rooms For Timeout
By MICHELLE DIAMENT
December 17, 2013 Text Size A A
A group of parents are suing after they say their children with disabilities were repeatedly sent from school to hospital emergency rooms in response to tantrums and other behavior issues.
The parents of six New York City students are suing the city and the local Department of Education alleging that schools are calling ambulances to transport children to hospitals because they don’t have proper procedures or staff in place to address the situations.
One student referred to as J.H. in court papers, now age 6, was sent to the hospital by ambulance against his mother’s wishes on numerous occasions including one instance when school staff said he was “not listening” and “refused to sit on a rug,” according to the lawsuit filed in U.S. District Court in New York last week. The child’s mother says her son is now disinterested in going to school and afraid of police and the hospital.
Meanwhile, a now-7-year-old with autism known as D.E. was sent to the ER repeatedly as a kindergartner after having tantrums even though he was often calm before the ambulance arrived and his mother asked to take him home instead. On several occasions, the mother and son spent between four and six hours at the hospital before staff determined that the boy did not require emergency services, the lawsuit alleges.
“Our clients are but a few of the thousands of students who are sent to the emergency room each year for disruptive behaviors,” said Nelson Mar, staff attorney at Legal Services NYC-Bronx, which filed the suit on behalf of the families. “We will seek to compel the city to end this costly practice of using hospital ERs as a ‘timeout room’ for students who act out in school.”
The legal aid organization said that during the 2011-2012 school year there were over 3,600 calls from schools in New York City to emergency services stemming from allegedly disruptive student behavior and the number of such calls is on the rise. In the majority of cases where students were taken by emergency officials from schools, the children had disabilities, the attorneys said.
Parents — all of whom are referred to only by their initials in court documents — say that the practice puts them in a tough spot financially, forcing them to miss work and leaving them with significant hospital and ambulance bills resulting from the incidents, and traumatizes their children.
“I hope that this lawsuit changes the system and other families don’t have to go through this,” said the mother of one of the students in a statement released by attorneys. “It has caused a financial and emotional strain for me and my entire family. I feel that they sent my son to the emergency room as an excuse to not do their job. If my child acts up at home I cannot send my son to the hospital emergency room.”
Devon Puglia, a spokesman for the New York schools, did not respond to request for comment from Disability Scoop, but told The Wall Street Journal that, “our school leaders make decisions in the best interests of children — be it instructionally or otherwise.”
The suit alleges violations of local and federal regulations and laws including the Individuals with Disabilities Education Act, the Rehabilitation Act and the Americans with Disabilities Act.
The families are seeking damages and say they want city education officials to provide appropriate training and resources so that school staff can handle disruptive behaviors without contacting emergency services.

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Take Action on the Horrid Proposed Mental Health Act

Two days ago we posted about the draconian mental health law proposed by Rep. Murphy. Michael Bailey, Past President of the National Disability Rights Network (NDRN) has listed some talking points to argue against the act and also urges you to TAKE ACTION NOW by calling your members of congress and urging them not to touch this horrid legislation with a 10 foot pole.Remember,hidden in most bad mental health legislative proposals is a requirement for forced drugging, which is a sly way congressional hacks support the big pharmaceutical companies. Nothing is more in violation of the ADA than that. Keep telling Congress “NOTHING ABOUT US WITHOUT US!”

From Michael Bailey:
Here are some talking points that can be used to succinctly convey reasons to oppose Helping Families in Mental Health Crisis Act of 2013.

The big thing is to get calls into House offices with the simple message of “please do not cosponsor Representative Murphy’s, the Helping Families in Mental Health Crisis Act of 2013.” Check http://www.house.gov for a list of Members and call 202-224-3121 to be transferred to a Member’s office if you just know the name and not their phone number. Just leave the message above with the person that answers the phone, if you want to get into more detail feel free to use the following talking points, but the key point is to say don’t cosponsor the legislation so we get numbers of people calling in with this message.

· Representative Murphy’s legislation will reduce funding for the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program by about 85% leaving individuals with mental illness no independent advocates to help address the myriad of issues they face every day.

· Representative Murphy’s legislation will make it easier to discriminate against people with mental illness in housing, employment, and education, and lead to fewer individuals receiving the treatment they need.

· In its 30 year history, the PAIMI program has been highly successful assisting people with mental illness and should continue to have the broadest authority possible to ensure people with disabilities are free from abuse and neglect and receive the services and supports they need.

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Congress Regresses With Mental Health Act- NDRN Fights Back.

Called “Help Families with Mental Health Act of 2013, this legislation does the opposite. Kinda like W’s No Child Left Behind. It is a disgusting pattern that Congressperson Murphy and his colleagues generally pass legislation that damages the weakest among us in terms of power….like cutting foodstamp benefits cuts services to people with little power and income and makes it less likely that they have any legal representation when abused.

Be ready to take action!

Here is the NDRN statement. Kudos to them for leading on!

WASHINGTON – The National Disability Rights Network (NDRN) today criticized legislation introduced by Representative Tim Murphy as short-sighted, harmful to people with mental illness, their families, and in fact all society. The so-called “Helping Families in Mental Health Crisis Act of 2013” will actually do the exact opposite.

“Today, Representative Murphy has turned his back on a program that has for almost 30 years protected people with mental illness from abuse and neglect, helped them receive needed services and supports (including treatment), helped these individuals get an education, find housing and employment and become taxpaying citizens, while also reducing recidivism and crime,” said Curt Decker Executive Director of the National Disability Rights Network.

Representative Murphy’s legislation will reduce funding for the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program by about 85% leaving individuals with mental illness no independent advocates nationwide to help address the myriad of issues faced every day. In 2012, with funding that was not adequate to serve all the people that requested services, the PAIMI program provided individual advocacy services to over 10,800 people, trainings to almost 135,000 people, information to over 35,000 individuals, investigated the circumstances in the deaths of over 2,700 individuals with mental illness, and provided systemic advocacy that positively impacted the lives of millions of people in the United States. Individual cases involve instances of abuse and neglect, but as importantly involve examples where an individual’s rights have been violated, such as employment and housing discrimination and denial of health and education services.

“Representative Murphy’s cuts to the PAIMI program will end all of this important work occurring nationwide, negatively impacting millions of American citizens,” said Mr. Decker.

The PAIMI program was enacted following an exhaustive Congressional investigation done by former Senator Lowell Weicker of Connecticut into the abuse and neglect that was occurring in our nation’s psychiatric institutions. Much like the reaction that occurred in Congress following the revelation of rampant abuse and neglect in state institutions serving individuals with intellectual disabilities, Congress decided that individuals with mental illness needed independent advocates in every state and territory to stop abuse and neglect, ensure that needed services and supports were being provided and the human and civil rights of these individuals were being protected. This legislation, the PAIMI Act, was ultimately signed into law by President Reagan.
Representative Murphy’s legislation will lead to more recidivism. Study after study has shown that an important factor in reducing recidivism is providing adequate mental health services to individuals while in jail and ensuring proper discharge planning from prison back into society with needed services and supports. Ensuring proper treatment and discharge planning is work that is being done by PAIMI advocates and staff in jails, prisons, and juvenile justice facilities every day across the entire nation. Unfortunately, this draconian reduction in the authorization for the PAIMI program is going to lead to less individuals receiving the treatment they need while in prison and thus increased crime through recidivism.

Additionally, rather than helping families in crisis, this bill will exacerbate the crisis that families are facing. Taking away the independent advocates that ensure that people are receiving needed health services and supports, are able to obtain an education and employment, and live in the community will put families in more of a crisis, then help them.

“NDRN, the entire Protection and Advocacy Network, and the people they serve that are individuals with mental illness call on Congress to reject this short-sighted, mean spirited, and harmful legislation,” said Mr. Decker.

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