Category Archives: disability studies

The intersection of rights in Harris v. Quinn

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via CT News Junkie, which reports that “Republican lawmakers and advocates for disabled people called upon the state Tuesday to halt plans to collect union fees from home health care workers” following the U.S. Supreme Court ruling in Harris v. Quinn. In that decision, the SCOTUS “found that home health care workers in Illinois paid through Medicaid can not be forced to pay fees to the union representing them.”

One of the advocates mentioned above is Manchester resident Cathy Ludlum, who has spinal muscular atrophy and employs personal care assistants.  Ludlow and other opponents of Connecticut’s health-care workers’ union “called upon the state to stop plans to begin collecting union dues and what is called ‘agency fees’ from workers who chose not to join the union but have nonetheless been represented by it in collective bargaining negotiations. ‘Were this not to happen yesterday, union dues and agency fees would start coming out of my employees’ paychecks,’” said Ludlum. “’What we are asking for, to answer your question, is [the application of union fees] be rescinded immediately so that they don’t take that hit starting in two weeks.’”

Other aspects of Ludlum’s advocacy have much in common with other disability rights activists:  she has written for the disability rights blog Not Dead Yet and been a vocal opponent of efforts to pass a “right to die” law in the state of Connecticut.  In a 2010 article in the Hartford Courant, Ludlum told reporters that she believed “misconceptions about people with severe disabilities can lead medical workers to give them less aggressive lifesaving options. Doctors might think they would not want to live if they were in the patient’s condition and assume the patient feels the same, she said. Or medical workers might see a disability as a fatal condition, even if it is not.” These observations made her “wary of an effort in Connecticut to let terminally ill patients end their lives through medication prescribed by doctors. . . The concept — giving people in pain control over their dying processes — may sound sympathetic, Ludlum said. But she and other advocates fear the reality will be more complex, and could leave people who have severe disabilities vulnerable. They worry about the law being misapplied — for example, if a person with a disability asks for help dying but is not terminally ill — and about the ideas such a policy would foster about the worthiness of a life lived with diminished capacity.”

On a website for disabled persons looking to hire home care workers, Ludlum has said, “The whole world opened up for me when I started hiring personal care assistants. Without their commitment and support, I could not have an active and independent life.” For Ludlum, “it became especially important that I hire personal care assistants who were reliable, and who would enjoy being part of my life. People who thought of it simply as a “job” usually moved on after a year or two. But those who really understood the importance of what they were doing often stayed five years or more. Some even became lifelong friends.”

Ludlum’s story is linked to that of her personal care assistant, Debbie Barisano, who says:

“For twenty-five years I worked in a high paying job as a computer programmer, but I was not happy. The job was very stressful and I was sick a lot. I had volunteered for two organizations working with people with disabilities, and I wanted to find a job in that area where I would be happy going to work every day. I decided to enroll at Manchester (CT) Community College in the Disability Specialist Program. One day Cathy, a woman with a severe physical disability, came to my class and spoke about her life. She mentioned that she needed a personal care assistant. I was interested, but at the same time I was scared. I had never done anything like that. I waited a month before calling Cathy, but I found out the first night that there was no reason to be nervous. She explained everything and I fell in love with the job. I have worked for Cathy since 1999, and I have loved going into work every day. In my first two years, I had only had two sick days, and I stopped needing some medications since I became a personal care assistant. I have had to make some sacrifices in order to work full time as a personal care assistant. I moved into a smaller place in affordable housing, and I do not have extra spending money any more. I also do not have any health benefits. But I would not trade my new profession for the extra money.”

Unfortunately, not all workers are able to make these kinds of sacrifices.  Both Ludlum and Barisano have opposed efforts to unionize home health care workers.  In 2012, Ludlum was the lead plaintiff in a lawsuit filed by the Yankee Institute for Public Policy, a conservative think-tank that “advocates for free market, limited government public policy solutions in Connecticut.” The lawsuit contended that Ludlow was “eligible for state subsidies that pay for her care through a Medicaid waiver,” and thus “she is an independent employer. She has the right to enter contracts with people who take care of her, and to negotiate benefits like vacation time and workers compensation, without any interference from a union. Similarly, just because PCAs receive a state subsidy for taking care of our most vulnerable neighbors like Cathy does not make them state employees. They are independent contractors and SEIU does not have a right to siphon off union dues from their pay.”

In other words, the Yankee Institute lawsuit contended that laws that created ways for home health care workers to join in collective bargaining trampled on the rights of disabled persons and the “right to work.”

Barisano also spoke against these laws.  In her testimony, Barisano called attention to the “unique relationship” between a personal care assistant and a person with a disability, likening this relationship that of a “family.” Barisano argued that the union “forcing itself” between the personal care assistant and the person with a disability would “ruin this relationship.”

This is very similar to the argument in Harris v. Quinn, except in this case it was an actual family member taking care of a person with a disability.  The lead plaintiff in that case, Pam Harris, said one reason she went to battle with the Illinois chapter of SEIU is that “I don’t want anyone to get between me and caring for my son.”

To those of us who study women’s history, these stories are very familiar.  Historically, nursing and personal care was done by female family members within the home.  Even after the profession of nursing left the physical confines of the home, and nurses started to form unions, the expectation that nursing was a “noble” profession that required exceptional levels of dedication and self-sacrifice persisted.  At the same time, the notion that these jobs were “women’s work” that were merely extensions of women’s traditional domestic responsibilities meant that they were historically undervalued and underpaid.

Eileen Boris and Jennifer Klein observe in an article in the Nation that these problems were especially true of domestic jobs held by immigrant women and women of color. They contend that the Harris decision “colludes in their misidentification as “just moms” and mischaracterizes the origins of home care work as an alternative to welfare for unemployed black domestic workers and other poor women. With a newly invented category of “partial public employee,” Alito denies women working in the home the same rights as other employees, returning unionized personal attendants to the status of household workers still excluded from the National Labor Relations Act. ” In addition,  “by dismissing the decades-long struggle of African American and immigrant women for recognition as workers, Harris reduces a state regulated labor market to individualized acts of love and obligation, furthering the agenda of well-funded anti-union forces.”

Not all home health workers share Barisano’s vision of sacrifice: rather, they welcome the ‘intrusion” of the union because it improves their wages and working conditions. Terrell Williams, one of the home health care workers who organized to become part of Connecticut’s SEIU District 1199, told CT News Junkie that “’I see being part of a union as a privilege. Home care workers put a lot of work in to form this union so we can have a voice and the issues that are important to us are heard. We are on the work sites every day, not elected officials, and we have the right to decide what is best for us and the people we care for.’”

In his column for the SCOTUS blog, Samuel Bagenstos points out that many disability rights activists supported the rights of their personal care assistants to collectively bargain:

Illinois’s system, like the systems in others states that have adopted consumer direction, gave the state the power to set workforce-wide terms and conditions of employment (like wages and benefits), while reserving day-to-day supervision and the choice of personal assistant to the individual beneficiaries with disabilities themselves. By allowing personal assistants to select a union to collectively bargain with the state on those workforce-wide terms and conditions, Illinois gave those workers the tools to negotiate higher wages and more ample benefits.  And this, in turn, helped to stabilize a personal-assistant workforce that had been marked by high turnover.  That is why many organizations of people with disabilities in Illinois and other states with similar collective-bargaining regimes signed on to a brief I filed in Harris in support of those regimes.”

In short, union rights, women’s rights, and the rights of persons with disabilities are intertwined. The Harris decision is not only a problem for organized labor and the rights of working women, it also threatens the independence of persons with disabilities.  It’s too bad Cathy Ludlow can’t see that.

 

Review of Leslie Reagan, Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America

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via H-Disability

Leslie J. Reagan. Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America. Berkeley: University of California Press, 2010. xv + 372 pp. $27.50 (cloth), ISBN 978-0-520-25903-4.

Reviewed by Heather Munro Prescott (Central Connecticut State University)
Published on H-Disability (March, 2012)
Commissioned by Iain C. Hutchison

Prescott on Reagan

This book continues the compelling story of the history of abortion in the United States that Reagan began in her award-winning book, When Abortion Was a Crime (1998). The title Dangerous Pregnancies refers not to pregnancies that were dangerous to the lives or health of mothers, but to the “dangers” to home, family, and society posed by the birth of “defective” babies. Focusing on the responses to the German measles epidemic in the United States during the early 1960s, Reagan shows how fears of disability helped lend legitimacy to the abortion rights movement.

Reagan goes beyond her earlier work by linking the history of reproductive rights to two other fields of scholarship: the history of epidemics and infectious disease; and the history of representations of people with disabilities. She shows that in marked contrast to earlier epidemics, the German measles outbreak did not single out nonwhite or other stigmatized groups as sources of infection. Nevertheless, race was at the center of media representations of the disease. Responses to the epidemic highlighted how the birth of a disabled child wrecked havoc on the status of white, middle-class, heterosexual, nuclear families. The epidemic came closely after alarming reports about severe birth defects in infants born to women who had taken the sleeping pill thalidomide while pregnant. Although the U.S. Food and Drug Administration had not approved the drug, some American women were able to obtain the drug from overseas. The story of Sherri Finkbine’s efforts to obtain an abortion after she discovered she had taken thalidomide while pregnant with her fifth child, helped transform attitudes towards abortion in the United States. During the pronatalist 1940s and 1950s, media coverage emphasized the deviant nature of abortion and of the women who sought these procedures. Finkbine’s story, along with that of other white, middle-class mothers who had contracted German measles while pregnant, transformed the image of abortion “from a shameful, thoughtless, and sick action to an ethical and responsible one” that protected families from the “burden” of raising a severely disabled child (p. 104).

Despite these changing attitudes towards abortion, significant barriers remained even for those who sought to terminate “dangerous pregnancies.” Reagan contrasts the cases of Barbara Stewart and Sandra Gleitman, who with their husbands filed “wrongful birth” cases against the hospitals that refused to provide abortions after the women had been exposed to German measles while pregnant. Both cases showed that hospital abortion committees were fickle and arbitrary. For the Stewarts, an African American couple, race posed an additional hurdle. While they had private health insurance, racial discrimination denied them access to physicians who had connections to hospital abortion review committees. By demonstrating the central role that race played in these deliberations, Reagan answers Chris Bell’s suggestion that disability studies scholars need to pay more attention to the experiences of “people of color.”

Reagan is less successful in showing how the German measles epidemic contributed to the emerging disability rights movement. She describes the work of “rubella parents”–most of whom were white and middle class–who fought for and won the right to public education for children with physical, sensory, and intellectual impairments. These parents were successful largely because rubella and its effects were not confined to the poor or to “people of color,” and because their arguments focused on the core middle-class value of access to education. Reagan also periodically mentions persons with congenital rubella syndrome and other disabilities, including those who objected to the “humane” and “merciful” reforms that made it easier for women to abort fetuses with birth defects. Reagan claims that even the suits filed by the Stewarts and Gleitmans reflected an aspect of this rights movement, since their aim was to get resources for their children. Yet Reagan underestimates the countervailing power of terms like “therapeutic abortion” and “wrongful birth” to reinforce prevailing beliefs that disability is a fate worse than death. Rubella immunization campaigns weakened the disability rights perspective even further. They used sentimental images of “pathetic” rubella children and played into popular notions of disability as a “tragedy” that could be prevented through universal vaccination against German measles.

Reagan shows how the rhetoric about “dangerous pregnancies” backfired during the 1980s and 1990s. Opponents of vaccination have seized on these same fears by alleging that vaccines cause autism, and that by refusing to vaccinate their children, they are saving themselves from the “heartbreak” of raising a disabled child. The discovery of fetal alcohol syndrome and other defects caused by environmental factors “erased” the history of women fighting for accurate information about potential threats to their babies and the right to abort “defective babies.” Public health campaigns by the March of Dimes and other organizations recast pregnant women themselves as risks to the unborn. Reagan rightly concludes that German measles acted as a “crucible for change” by prompting dialogue about reproductive rights, civil rights, and disability rights, but this change was incomplete. Abortion rights are increasingly under assault, and stigmatizing language about disability and misconceptions about persons with disabilities remain with us today.

If there is additional discussion of this review, you may access it through the list discussion logs at: http://h-net.msu.edu/cgi-bin/logbrowse.pl.

Citation: Heather Munro Prescott. Review of Reagan, Leslie J., Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America. H-Disability, H-Net Reviews. March, 2012.
URL: http://www.h-net.org/reviews/showrev.php?id=33916

This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

More Viral Politics: Teaching Students with Autism is Not Much Different than Teaching the Neurotypical

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via Tenured Radical, who kvetches about the problems of teaching students with autism. I was shocked to see that someone as intelligent as TR repeated erroneous claims about autism and vaccines (see the CDC website for accurate information).  What was even more disturbing, though, was her rather dismissive attitude towards students with autism.  From the main article:

“What seems not debatable is that our sense of fairness, and the Americans with Disabilities Act (ADA) is way ahead of any conversation about what it will mean for young people who need a great deal of support to realize their human potential to attend college.  It seems certain is that increasing numbers of children on the autism spectrum — many of whom have unusual abilities — will go to college. As USA Today reported three years ago, they are already in our classrooms.  This is happening in a context in which there is little to no attention being paid to giving full-time faculty the training to teach students who have a wide range of capacities when it comes to what counts for normal classroom discipline:  sitting still for an hour and taking notes, being in crowded rooms where they risk being bumped and touched, overcoming obsessive behavior to get to class or hand in a paper on time, working in small groups with other students, or being in large classes with crowds of strangers.  It is also happening in a context in which being full-time faculty is becoming anomalous, and the financial “flexibility” of running higher education on per-course labor makes it unlikely that the vast majority of faculty will be eligible, or open to making unpaid time available, for the training that would make their classrooms accessible to autistic students. The challenges are somewhat different from the vast category of “learning disabilities” for which responsible colleges and universities provide learning centers to provide the support that makes what we euphemistically call “accommodation” useful.”

First, I’ll say that I’ve had several students with Asperger’s (aka Aspies) in my classes.  In general, they have been among the best students I’ve had.  In my experience the “obsessiveness” means that Aspies are more diligent about understanding assignments and meeting deadlines.  Yes some like to hog the conversation, but so do quite a few neurotypical students.  I’ve had plenty of neurotypicals fail to pay attention, sit still, or hand work in on time.

In the comments section, Elizabeth Switaj wrote:

“Yes, training and having the time to implement training is important, but if faculty are going to learn to support autistic students, a good first step would be to listen to autistic undergraduates themselves and to put the needs they express first instead of responding primarily to the perspective of the neurotypical parents of autistic children. The perspective of autistic undergraduates, which seems to me to be the most important on the subject, is entirely missing from this post.

One of the fundamental tenets of the disability rights movement is “nothing about us without us”–and this is no less important when it comes to autistic people (and I’m sorry but a single secondhand statement from an unnamed teenager really isn’t sufficient).”

I couldn’t say this better myself.  Unfortunately, TR didn’t get it. She said, ” And back to the “nothing without us” principle of political organizing: it’s incredibly attractive, ethical and powerful. But although bringing disabled people together as an identity group is important in terms of theory and social movement, there should be concern about the similarity that mandates, and silencing, within the group, in the name of empowerment for all. This is the lesson of other social movements. ASD children *can’t* speak for themselves, mostly because they are children, but for other reasons too. Without a movement largely driven by parents up to this point, which may evolve as ASD kids come together as adults in future decades, there would be no attention to this issue at all, vaccinations or no vaccinations.”

First, those of us in history of childhood and youth have pointed out time and time again that children CAN speak for themselves and we as adults should listen  More importantly, there IS an autism rights movement led by and for persons with autism.   Seriously, would TR have said that GLBT children and youth need parents to speak for them?  I doubt it.  So why not acknowledge the rights of persons with autism to speak and organize for themselves?

Invigorated and Exhausted from American Association for the History of Medicine meeting

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I got back from the annual meeting of the American Association for the History of Medicine meeting yesterday as as usual am bursting with ideas and buried in work.  So, this will be quickie overview with more reflection and analysis at a later date.

First, I’d like to report that my forthcoming book  (cover photo at left) is moving much closer to actually being out.  I received the page proofs about a week ago and am working on getting them back ASAP.  Unfortunately the editor decided not to have them available at the meeting because they aren’t corrected — but there’s always next year.  Hopefully they will be available at the Berkshire Conference of Women Historians next month.

Meanwhile, I got an opportunity to plug my book and establish myself as an authority on the “morning after pill” in an interview for a documentary by Caryn Hunt, President of the Philadelphia chapter of the National Organization for Women.  It was a lot of fun and I wasn’t as nervous as I expected.  Also, I got a new suggestion for a doppelganger. Thanks,  I agree!

My presentation on The Pill at 50: Scientific Commemoration and the Politics of American Memory went very well and I had a substantial audience (at least 30) despite it being on first thing on the last day of the conference.  The reaction was enthusiastic (especially from this leading authority on the history of the Pill) so I’m planning to expand this and submit it to the Bulletin of the History of Medicine.

Since I’m teaching in a public history graduate program, and living in Connecticut, my “commemorative mania” will continue with some kind of commemorative event celebrating the 50th anniversary of Griswold v. Connecticut in 1965 (which follows soon after my own half-century mark).  Not sure what this will be but the folks at Yale and Planned Parenthood are keen so looks like it will happen.  I also told the editor at Rutgers that I’m interested in doing a narrative history (as opposed to a legal history that uses Griswold as a lead-up to Roe v. Wade rather than an event in it’s own right).  As it turns out, a very distinguished senior historian of medicine and public health was one of the witnesses who testified.  It seems that the New Haven police was willing to shut down the clinic so that birth control advocates in the state could use this as a test case, but they needed evidence that the clinic was dispensing birth control.  This historian was a graduate student at Yale and was one of Dr. Buxton’s patients.  She volunteered to get the evidence (a tube of contraceptive jelly) and then went straight to the police department to turn in the incriminating evidence and give a statement.  When she blurted out that contraception was “women’s right”, the Irish cop asked her, “don’t you mean a married woman’s right?” What a story!

I heard lots a great papers and connect with all my history of medicine buddies.  However, work awaits so I’ll have to continue these conference report later (most likely much later since research papers and finals will be landing on my desk shortly).

Back from AHA, report on Task Force on Disability and Paul Longmore Tribute

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I’m back from the annual meeting American Historical Association and am going to split my reporting into several parts.  I’ll start with the main reason I attended, which was to represent the Disability History Association at the Open Forum on Disability and Tribute to the work of Paul Longmore on Friday afternoon.  When I first arrived at the session, the room had a bunch of press people taking pictures of the Task force on disability members and frantically moving around equipment.  I thought, wow, this must mean that disability history has arrived.  Awesome!

Wrong:  the press were left over from the previous roundtable on Beverly Gage’s book, The Day Wallstreet Exploded, and the frenzy was to get the sound equipment and cables out of the way so that Michael Rembis could navigate his wheelchair to the table at the front of the room.  Hopefully the pictures the press folks took will appear somewhere along with a report on the Task force, and not just be presented to them as souvenirs!

Seriously, what better way to illustrate Michael’s personal accounts of how degrading, exhausting, and humiliating it is to continually have to ask for accommodations  so that he can do what others take for granted.  For example, Michael couldn’t reach any of the public computers set up in the Hynes convention center because they were on tables too high for him to reach.  I didn’t ask him what he thought about the conference venue — presumable having the various session locations connected by the Prudential center shopping mall was better than trying to navigate the snowy streets of Boston.

The overall results of the Task force’s survey indicate a major disconnect between what chairs/administrators report (i.e. most cases involving disability are resolved satisfactorily), and reports from persons with disabilities, who state that its up to them to make requests and continually badger their HR departments and other powers that be to get those requests honored.  Those who are adjuncts or untenured are reluctant to ask or if they do fear making too many waves by persisting in getting these requests fulfilled.  Michael summed this up by persuasively observing that the notion of “reasonable accommodation” perpetuates the stigmatized, medicalized, individualized model of disability that those of us in disability history have been fighting to eliminate.  Right on!  I’ll wait until the full report comes out before I comment on this further.

Other issues that were discussed included a mentorship program matching graduate students/junior faculty with senior faculty with disabilities; ongoing efforts to get AHA to validate disability history as a legitimate field of study; and how to recruits panels and papers on disability history for the next AHA meeting in 2012.  I made a plug for folks to join DHA (somewhat awkwardly because I didn’t have the forethought to bring promotional materials with me.)

The tribute to the late Paul Longmore was incredibly moving — I will try to get a PDF of the testimonials that were read.  He will be sorely missed.

Speaking of stigma– it disgusts me  how quickly even liberal bloggers are using ableist words like “nutcase” and “whacko” to describe the man who shot Congresswoman Giffords and others at a public event in Arizona yesterday.  [even more moderate terms like “these people” are demoralizing because they peg persons with mental illness as socially deviant “others” ]  According to vaughanbell at Mind Hacks.”

I suspect we’re going to hear a great deal more about the issue in the coming weeks, and not all of it positive or well-informed.

This article looks at some of the relevant scientific evidence and some of the misconceptions that invariably arise when such tragic circumstances make headlines.

Shortly after Jared Lee Loughner had been identified as the alleged shooter of Arizona Rep. Gabrielle Giffords, online sleuths turned up pages of rambling text and videos he had created. A wave of amateur diagnoses soon followed, most of which concluded that Loughner was not so much a political extremist as a man suffering from “paranoid schizophrenia.”

For many, the investigation will stop there. No need to explore personal motives, out-of-control grievances or distorted political anger. The mere mention of mental illness is explanation enough. This presumed link between psychiatric disorders and violence has become so entrenched in the public consciousness that the entire weight of the medical evidence is unable to shift it. Severe mental illness, on its own, is not an explanation for violence, but don’t expect to hear that from the media in the coming weeks.”

Here’s a Link to the longer  Slate article ‘Crazy Talk’.

Book is done, off to AHA

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Well, the book manuscript is finally done, printed (despite a broken department printer — found one in another department) and sent off to the publisher.  Now I’m gearing up for the annual meeting of the American Historical Association in Boston, which starts tomorrow.  I don’t often attend this meeting  — it’s an inconvenient time of year, I prefer smaller conferences, etc.  — but the chance to meet other digital history folks (aka twitterstorians) had me enthusiastic.  One of them is even more enthusiastic — see this post at the blog Notes from the Field — and I’m looking forward to meeting her and others in person.

I’m also one of the few executive board members of the Disability History Association who can attend the meeting.  So, I’ll be there representing.  If you’re interested in this area, please do come to the Task Force on Disability and  open forum and tribute to the late, great Paul Longmore on Friday afternoon.

As always, I’ll will be knitting during sessions (and in between). Please don’t take offense — it’s better than texting!

If you can’t make the meeting, you can follow some of it on Twitter using #AHA2011.

P.S.  Tenured Radical has a guide to recommended sessions here.  Also see her ongoing series on job interviews.

History of Health Activism Conference at Yale

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Here is a Yale Daily News report on the conference, “Health Activism in the 20th century,” that I participated in at Yale last weekend.  (minor correction — MADD stands for Mothers Against Drunk Driving!)  As the reporter was only there for Saturday (bright and early at 8:30am!) and I was the first presenter, he didn’t get a chance to observe my brilliant presentation, Creating a Middle Ground: Feminist Health Activists and Emergency Contraception in the United States, 1970-2000! (I’m giving a shorter version of this paper at the History of Science Society meeting next weekend )  Here are the main points:

This paper looks at the changing position of the National Women’s Health Network (NWHN) on emergency contraception, aka the “morning-after pill.” Initially this group was a vehement opponent of emergency contraception and other forms of hormonal birth control.  By the early 1990s the organization had joined broader efforts to develop a dedicated emergency contraceptive product.  NWHN found that there was sufficient evidence about the safety and effectiveness of this contraceptive method to “cautiously support its use.”
More importantly, increasing restrictions on abortion and access to federally-funded birth control under Presidents Ronald Reagan and George H.W. Bush convinced the organization that they needed to help ensure that women had access to emergency contraception when other birth control methods failed.

This paper is a chapter out of a book-length project on the history of emergency contraception in the United States, which is under contract with Rutgers University Press. This project aims to use the history of emergency contraception to illuminate key themes in the politics of birth control and abortion since the 1960s.

In terms of relevance to other issues in health activism in the twentieth century, one of my main points is how the history of emergency contraception reflects the professionalization of the women’s health movement. Since the 1970s, feminist health activists had gradually become insiders in reproductive health by earning professional credentials, which gave them the ability to reform organized medicine and health care policy from within. Although some of their contemporaries accused these newly-minted professionals of “selling-out” rather than furthering the cause of women’s self-empowerment,” the corresponding radicalization of the medical “establishment” was equally significant. This book is intended to contribute to recent scholarship on how women have used experience of the physical body as a source of knowledge production and feminist practice regarding women’s health issues. For example, Wendy Kline argues that “body knowledge” was central to the women’s health activism of Second Wave feminism, and that this feminist framework was abandoned as the women’s health movement adopted the professional credentials and scientific language of the health care establishment.
I suggest that rather than being a departure from Second Wave feminist strategies that were based on knowledge of the biological body, recent activism on emergency contraception demonstrates how women have continued to use personal histories of their bodies to transform reproductive health research and healthcare policy. Since the early 1990s, emergency contraception has served as a “bridge issue” that brought together former adversaries, including feminist health organizations, population and family planning people, and groups representing women of color who were the main targets of attempts to control the “population crisis” in the United States.

This coalition did not arise without a struggle and had to overcome much bad faith generated by sexism in the medical profession and the racist and coercive policies of the population movement. My book shows how these diverse groups created a “middle ground” between an older liberal feminist position that tended to support technological innovations such as hormonal contraception; and a more radical feminist position that criticized the use of hormones but was otherwise in favor of reproductive rights.

Ableism and NARAL Pro-Choice America

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via NARAL Pro-Choice America, which is running a pro-choice slogan campaign.  Here are the choices:





I voted for the first one — why?  Because using “insanity” to discredit opponents trivializes persons with mental illness — a group that already experiences social marginalization and oppression.  It’s an example of what the blog FWD/Forward refers to as liberal ableism, a variation on hipster ableism, hipster racism and liberal sexism, as well as liberal racism,

Oh yeah, in case some folks think I’m just singling out feminist organizations, I’m not too happy with Jon Stewart’s Rally to Restore Sanity either.

President Obama’s remarks about the ADA 20th anniversary

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via Media dis&dat

“THE PRESIDENT: Thank you. Good evening, everybody. (Applause.) Thank you so much. Well, we have a gorgeous day to celebrate an extraordinary event in the life of this nation. Welcome, all of you, to our White House. And thank you, Robert, for the wonderful introduction. It is a pleasure and honor to be with all of you on the 20th anniversary of one of the most comprehensive civil rights bills in the history of this country — the Americans with Disabilities Act. (Applause.)

I see so many champions of this law here today. I wish I had time to acknowledge each and every one of you. I want to thank all of you. But I also want to thank our Cabinet Secretaries and the members of my administration here today who are working to advance the goals of the ADA so that it is not just the letter of the law, but the spirit of the law, that’s being applied all across this country. (Applause.)

I want to thank the members of Congress in attendance who fought to make ADA possible and to keep improving it throughout the years. (Applause.) I want to acknowledge Dick Thornburgh, who worked hard to make this happen as Attorney General under President George H.W. Bush. (Applause.)

And by the way, I had a chance to speak to President Bush before I came out here, and he sends heartfelt regards to all of you. And it’s — he’s extraordinarily proud of the law that was passed. He was very humble about his own role, but I think it’s worth acknowledging the great work that he did. (Applause.)

We also remember those we’ve lost who helped make this law possible — like our old friend, Ted Kennedy. (Applause.) And I see Patrick here. And Justin Dart, Jr., a man folks call the father of the ADA — whose wife Yoshiko, is here. (Applause.) Yoshiko, so nice to see you. (Applause.)

I also notice that Elizabeth Dole is here, and I had a chance to speak to Bob Dole, as well, and thank him for the extraordinary role that he played in advancing this legislation. (Applause.)

Let me also say that Congressman Jim Langevin wanted to be here today, but he’s currently presiding over the House chamber — the first time in our history somebody using a wheelchair has done so. (Applause.)

Today, as we commemorate what the ADA accomplished, we celebrate who the ADA was all about. It was about the young girl in Washington State who just wanted to see a movie at her hometown theater, but was turned away because she had cerebral palsy; or the young man in Indiana who showed up at a worksite, able to do the work, excited for the opportunity, but was turned away and called a cripple because of a minor disability he had already trained himself to work with; or the student in California who was eager and able to attend the college of his dreams, and refused to let the iron grip of polio keep him from the classroom — each of whom became integral to this cause.

And it was about all of you. You understand these stories because you or someone you loved lived them. And that sparked a movement. It began when Americans no longer saw their own disabilities as a barrier to their success, and set out to tear down the physical and social barriers that were. It grew when you realized you weren’t alone. It became a massive wave of bottom-up change that swept across the country as you refused to accept the world as it was. And when you were told, no, don’t try, you can’the — you responded with that age-old American creed: Yes, we can. (Applause.)

AUDIENCE MEMBER: (Inaudible.)

THE PRESIDENT: Yes, we can!

Sit-ins in San Francisco. Demonstrations in Denver. Protests in Washington, D.C., at Gallaudet, and before Congress. People marched, and organized, and testified. And laws changed, and minds changed, and progress was won. (Applause.)

Now, that’s not to say it was easy. You didn’t always have folks in Washington to fight on your behalf. And when you did, they weren’t as powerful, as well-connected, as well-funded as the lobbyists who lined up to kill any attempt at change. And at first, you might have thought, what does anyone in Washington know or care about my battle? But what you knew from your own experience is that disability touches us all. If one in six Americans has a disability, then odds are the rest of us love somebody with a disability.

I was telling a story to a group that was in the Oval Office before I came out here about Michelle’s father who had MS. By the time I met him, he had to use two canes just to walk. He was stricken with MS when he was 30 years old, but he never missed a day of work; had to wake up an hour early to get dressed —

AUDIENCE MEMBER: So what.

THE PRESIDENT: — to get to the job, but that was his attitude — so what. He could do it. Didn’t miss a dance recital. Did not miss a ball game of his son. Everybody has got a story like that somewhere in their family.

And that’s how you rallied an unlikely assortment of leaders in Congress and in the White House to the cause. Congressmen like Steny Hoyer, who knew his wife Judy’s battle with epilepsy; and Tony Coehlo, who waged his own; and Jim Sensenbrenner, whose wife, Cheryl, is a tremendous leader and advocate for the community. And they’re both here today. (Applause.)

Senators like Tom Harkin, who’s here today, and who signed — (applause) — who signed part of a speech on the ADA so his deaf brother, Frank, would understand. And Ted Kennedy, whose sister had a severe intellectual disability and whose son lost a leg to cancer. And Bob Dole, who was wounded serving heroically in World War II. Senior officials in the White House, and even the President himself.

They understood this injustice from the depths of their own experience. They also understood that by allowing this injustice to stand, we were depriving of our nation — we were depriving our nation and our economy of the full talents and contributions of tens of millions of Americans with disabilities.

That is how the ADA came to be, when, to his enduring credit, President George H.W. Bush signed it into law, on this lawn, on this day, 20 years ago. That’s how you changed America. (Applause.)

Equal access — to the classroom, the workplace, and the transportation required to get there. Equal opportunity — to live full and independent lives the way we choose. Not dependence — but independence. That’s what the ADA was all about. (Applause.)

But while it was a historic milestone in the journey to equality, it wasn’t the end. There was, and is, more to do. And that’s why today I’m announcing one of the most important updates to the ADA since its original enactment in 1991.

Today, the Department of Justice is publishing two new rules protecting disability-based discrimination — or prohibiting disability-based discrimination by more than 80,000 state and local government entities, and 7 million private businesses. (Applause.) And beginning 18 months from now, all new buildings must be constructed in a way that’s compliant with the new 2010 standards for the design of doors and windows and elevators and bathrooms — (applause) — buildings like stores and restaurants and schools and stadiums and hospitals and hotels and theaters. (Applause.)

My predecessor’s administration proposed these rules six years ago. And in those six years, they’ve been improved upon with more than 4,000 comments from the public. We’ve heard from all sides. And that’s allowed us to do this in a way that makes sense economically and allows appropriate flexibility while ensuring Americans with disabilities full participation in our society.

And for the very first time, these rules will cover recreational facilities like amusement parks and marinas and gyms and golf facilities and swimming pools — (applause) — and municipal facilities like courtrooms and prisons. (Applause.) From now on, businesses must follow practices that allow individuals with disabilities an equal chance to purchase tickets for accessible seating at sporting events and concerts. (Applause.)

And our work goes on. Even as we speak, Attorney General Eric Holder is preparing new rules to ensure accessibility of websites. (Applause.)

AUDIENCE: Yes, we can.

THE PRESIDENT: Yes, we can.

We’re also placing a new focus on hiring Americans with disabilities across the federal government. (Applause.) Today, only 5 percent of the federal workforce is made up of Americans with disabilities — far below the proportion of Americans with disabilities in the general population. In a few moments, I’ll sign an executive order that will establish the federal government as a model employer of individuals with disabilities. (Applause.) So we’re going to boost recruitment, we’re going to boost training, we’re going to boost retention. We’ll better train hiring managers. Each agency will have a senior official who’s accountable for achieving the goals we’ve set. And I expect regular reports. And we’re going to post our progress online so that you can hold us accountable, too. (Applause.)

And these new steps build on the progress my administration has already made.

To see it that no one who signs up to fight for our country is ever excluded from its promise, we’ve made major investments in improving the care and treatment for our wounded warriors. (Applause.) To ensure full access to participation in our democracy and our economy, we’re working to make all government websites accessible to persons with disabilities. (Applause.)

We’re expanding broadband Internet access to Americans who are deaf and hard of hearing. We’ve followed through with a promise I made to create three new disability offices at the State Department and Department of Transportation and at FEMA.

And to promote equal rights across the globe, the United States of America joined 140 other nations in signing the U.N. Convention on the Rights of Persons with Disabilities — the first new human rights convention of the 21st century. (Applause.)

America was the first nation on Earth to comprehensively declare equality for its citizens with disabilities. We should join the rest of the world to declare it again — and when I submit our ratification package to Congress, I expect passage to be swift. (Applause.)

And to advance the right to live independently, I launched the Year of Community Living, on the 10th anniversary of the Olmstead decision — a decision that declared the involuntary institutional isolation of people with disabilities unlawful discrimination under the ADA. (Applause.)

So HHS Secretary Kathleen Sebelius and HUD Secretary Shaun Donovan have worked together to improve access to affordable housing and community supports and independent living arrangements for people with disabilities. And we continued a program that successfully helps people with disabilities transition to the community of their choice. (Applause.) And I’m proud of the work that the Department of Justice is doing to enforce Olmstead across the country.

And we’ve finally broken down one discriminatory barrier that the ADA left in place. Because for too long, our health care system denied coverage to tens of millions of Americans with preexisting conditions — including Americans with disabilities. It was time to change that. And we did. Yes, we did. (Applause.)

So the Affordable Care Act I signed into law four months ago will give every American more control over their health care -– and it will do more to give Americans with disabilities control over their own lives than any legislation since the ADA. I know many of you know the frustration of fighting with an insurance company. That’s why this law finally shifts the balance of power from them to you and to other consumers. (Applause.)

No more denying coverage to children based on a preexisting condition or disability. No more lifetime limits on coverage. No more dropping your coverage when you get sick and need it the most because your insurance company found an unintentional error in your paperwork. (Applause.) And because Americans with disabilities are living longer and more independently, this law will establish better long-term care choices for Americans with disabilities as a consequence of the CLASS Act, an idea Ted Kennedy championed for years. (Applause.)

Equal access. Equal opportunity. The freedom to make our lives what we will. These aren’t principles that belong to any one group or any one political party. They are common principles. They are American principles. No matter who we are — young, old, rich, poor, black, white, Latino, Asian, Native American, gay, straight, disabled or not — these are the principles we cherish as citizens of the United States of America. (Applause.)

They were guaranteed to us in our founding documents. One of the signers of those documents was a man named Stephen Hopkins. He was a patriot, a scholar, a nine-time governor of Rhode Island. It’s also said he had a form of palsy. And on July 4, 1776, as he grasped his pen to sign his name to the Declaration of Independence, he said, “My hand trembles. But my heart does not.” My hand trembles. But my heart does not.

Life, liberty, the pursuit of happiness. Words that began our never-ending journey to form a more perfect union. To look out for one another. To advance opportunity and prosperity for all of our people. To constantly expand the meaning of life, liberty, the pursuit of happiness. To move America forward. That’s what we did with the ADA. That is what we do today. And that’s what we’re going to do tomorrow — together.

So, thank you. God bless you. And God bless the United States of America. Let me sign this order.”

Americans With Disabilities Act Approaches 20th anniversary, but Persons with Disabilities Still not Free

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From ADAPT’s Facebook page:

Sisters and Brothers in the Disability Community:

As the 20th anniversary of the signing of the Americans with Disabilities Act draws near, we approach the milestone with mixed emotions. Securing national civil rights legislation, protecting the rights of people with disabilities, was truly historic. It is important that we recognize the incredible nature of this accomplishment and the hard work of those that made this happen, but 20 years after President George H. W. Bush signed this civil rights legislation into law and as our community is preparing for the celebrations, we pause in disappointment that the promise of freedom has still not reached our sisters and brothers in nursing facilities and other institutions.

Our sisters and brothers remain locked away, unseen and unheard. For them, the act is just words on paper. They are not given the opportunity to exercise their civil rights under this law because they still do not have the basic freedoms that other Americans enjoy.

As the Anniversary date draws closer, they may hear about the progress our community has made over the past 20 years, but knowing that you are protected against discrimination in employment means nothing when the hub of your life is a bedroom you share with a stranger. Knowing that buildings and public accommodations are accessible means nothing when the facility staff won’t let you leave; and even having access to lifts on buses – as dear to our hearts as that is – means nothing when you cannot afford to go anywhere on the allowance that is left over after the institution has taken its share of your money.

When we gather together as a community, we must remember that our sisters and brothers in institutions will not be toasting those that authored or advocated for the Act. They will not be celebrating independent living, either as a movement or personal achievement, and they certainly won’t share in the power or pride of the disability community. For them, July 26th will be the same as every other day in the institution.

Recently, ADAPT has been criticized by some of the provider-based advocates in our community because we are publicly demanding that Speaker Pelosi sign onto the Community Choice Act and agree to eliminate the institutional bias once and for all. They tell us that publicly questioning “our friends” is inappropriate. We are told we should be grateful for the efforts that have been made so far, and that we must be patient because change takes time.

We will not apologize for our impatience. We do this because our brothers and sisters have waited long enough for their freedom. We cannot sit by, patiently and quietly waiting for our government to give our people the freedom which should be our birthright.

We had great hopes for President Obama and this Congress. Many of us believed that his promise for change included the promise of freedom. When President Obama was taking the oath of office with his hand on Lincoln’s bible, it seemed like fate was telling us that he would free our people. When the President and Congress took up health care reform, we were sure that they would finally eliminate the institutional bias, and we hoped that this historic anniversary in the disability community would be celebrated with historic change. Unfortunately, the President and Congress did not have the political will to make this happen. While we recognize that some gains were made, unlike any other class of Americans, our freedom remains a state option.

It is, indeed, true that one of the tools we are using to help people leave institutions and move into the community is the Supreme Court’s Olmstead decision, which is based on the requirements of the ADA, and it is true that President Obama’s administration has demonstrated an unprecedented commitment to enforcing the Olmstead decision. But such efforts are transitory. We have seen, during the last 20 years, that new administrations have their own priorities, and although there may now be a commitment to enforce the Olmstead decision, the pendulum will ultimately swing back in the other direction. We also know that the gains we may make in the courts are hard-fought, slow, and constantly subject to attack. Even right now, as many in the disability community commemorate the ADA’s anniversary, the Attorney General in Connecticut is coordinating legal efforts by the states to fight against some of the recent gains we have made in court which will allow more of our people to live in freedom. Ironically, the deadline for states to join the effort is just one day after the anniversary, July 27th.

In America, freedom shouldn’t ever be optional, but – in fact – for us it is.

While federal Medicaid rules require states to pay for institutional placement, community-based alternatives are state options and continually subject to elimination in state budget cuts. It is ironic that as we celebrate a civil rights victory that is 20 years old, our freedom is becoming even more precarious and the situation becoming more dire. States, facing record budget shortfalls, are cutting the services that support community living options for seniors and persons with disabilities. These budget cuts force people into unwanted placement, stealing from them much of what is most precious: their homes, their families and their freedom.

Some people have moved across the country to a different state to get supports and services to live outside of the institution. There, they have been able to share in the promise of the ADA, but many people don’t know about the services available in other states or simply might not be able to make the journey on this modern underground railroad.

But as long as community services are only an option, those who have escaped to freedom cannot escape the fear. No place is safe because their freedom can easily disappear at the whim of state policy makers. They will be called upon to help solve their state’s budget crisis by sacrificing their freedom, home and lives.

We all need to recognize that through personal circumstance or state policy change any of us can lose our freedom. No one in our community is exempt. No one is safe. No one in our community can afford to be comfortable, but it is also our hope that – from this discomfort – the disability community will be mobilized to take action and, together, we will build on a 20-year legacy to address this injustice. Our movement isn’t about the civil rights for some of us; it is about the freedom of all of us.

We cannot wait any longer. ADAPT asks you, during this ADA 20th anniversary celebration, to recommit your energy to ending the institutional bias during the next Congress. The time is now to end the institutional bias and FREE OUR PEOPLE!

Sincerely,

The ADAPT Community