Disaboom Alexa Blog

Sarah Palin's Speech

Alexa — Wed, 29 Oct 2008 20:27:00 GMT

Hey Disaboom, did ya miss me? :)

Here is a link to the remarks Gov. Palin made in Pittsburgh a few days ago on education for children with disabilities.

Personally, I applaud the efforts she's made to fund better education for these students, and I'm thrilled to hear that fully funding IDEA is one of her priorities.

However, I'm not so sure of what she says about school choice, here:

Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child. And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open.

Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students. Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options.

I tend to be generally leery of "school choice." It strikes me as a way of avoiding the symptom, or providing a way for more children to get out of attending this or that failing public school, rather than seeking a cure for the disease through serious and lasting public school reform. I'm also not convinced that your average voucher does much. Yes, excellent private schools exist, but I doubt that a voucher offers enough for a child in a struggling school district to attend the sort of fantastic, elite, exclusive institution people think of when they hear the words "private school."

In the case of children with disabilities, though, I am less sure what to think. I myself went to very excellent public schools -- in all ways but one. When it came to the physical therapy I needed, or the adaptive phys ed classes, walking into those rooms was like walking into the Dark Ages. I saw behavior and treatment that shocked and appalled me, the kind of thing that the excellent teachers I had everywhere else would not have stood for for a moment.

And my disability is relatively mild. I remember once, as a kid, talking to a friend of mine about school. When she insisted she was happy at her private school for kids with disabilities, I was shocked and appalled. Who would want to be cordoned off, taken away from the other kids, coddled and protected at best, at worst considered something to quarantine? But growing up I realized that my friend very likely avoided the abusive behavior, lack of funds, and lack of training on the part of some of the public school's special ed people. Maybe not being mainstreamed was worth all that.

So maybe school choice is a good thing. That is, if Gov. Palin is really prepared, in a party that's leery of "tax and spend" even during economic booms, to fund it enough that it really makes sure the sort of things that happened to me don't frequently happen again. I'm not entirely convinced, as is probably clear, but if she does become Veep, we'll see. And if it's what's best, it's what's best.

But I still have the same concern I have about school choice/vouchers as a solution to The Public School Problem. Namely, if all the parents who can eagerly yank their kids with disabilities out of the public school system, what happens to the kids who remain? I gather that what she wants should mean none do, but I have to say I'm leery. How much taxing and spending is that going to require? How much money really follows the child?

Whether they remain because their parents, as mine did, believe that public schooling is best for children, or because even with that credit (or whatever) they just don't have the resources to send their kid to a school designed for them?

I fear that the answer will have to be that, like me, those kids will be in special ed programs that lack any meaningful funding. People who just barely know what to do will be put in positions of power over them before they're ready to handle it, and probably have too many kids to deal with at once. Those kids will get poor care at best and be mistreated by overworked and overwhelmed people at worst.

What's the answer? Surely I don't know. But I am, as I say here, somewhat alarmed by the suggestion that the public school system be left to rot. Not all kids with disabilities can grow wings and fly off to the fairyland of schools designed specifically for people like us.

Danieal Kelly update

Alexa — Mon, 13 Oct 2008 17:00:00 GMT

re-posted from FRIDA:

http://fridanow.blogspot.com/2008/10/danieal-kelly-update-philadelphia-pa.html

Danieal Kelly update

Philadelphia, PA - Two more municipal employees will be fired for their roles in the death by starvation of 14-year-old Danieal Kelly, LD News reported on Saturday. It also reported that one other employee has retired and a fourth has resigned. Nine people face criminal charges in the case.

As reported by FRIDA in earlier posts, Danieal Kelly, age 14, had cerebral palsy, and died in 2006 from starvation and neglect. Her mother, Andrea Kelly, 39, has been charged with her murder, and her father, Daniel Kelly, has been charged with child endangerment.

For earlier reports, see:

Parents charged in starvation death sue Philly
A Timeline of Neglect
9 charged in starvation death of teen

Wow.

Alexa — Sat, 11 Oct 2008 21:13:00 GMT

This is the best post ever.

Movies, AGAIN: "Blindness"

Alexa — Fri, 03 Oct 2008 01:28:00 GMT

I haven't seen too much about the movie Blindness, but I thought I'd pass along a link to this statement from Justice For All blog:

Tens of Thousands of Blind Americans Object to the Movie ‘Blindness’
WASHINGTON, Sept. 29, 2008 -- Residents of an unnamed city suddenly and mysteriously go blind in the movie “Blindness,” scheduled for release on Friday, Oct. 3. The dehumanizing, animalistic way that blind people are portrayed in this movie has blind people across the United States angry. Some are even organizing picket lines and waging protests at theaters where the movie is being shown.
“The movie ‘Blindness’ is a demeaning depiction of people's reactions to losing their eyesight," stated Mitch Pomerantz, president of the American Council of the Blind. Dr. Ronald E. Milliman, a blind university professor and also a member of the ACB, says, "In a very mythical sense, something like what is being shown in the movie might have happened hundreds or thousands of years ago, but certainly not in any civilized society such as what we have in the United States today. The movie is at best totally misleading, and at worst serves to frighten deeply those who see it."
In the movie, fearing that the blindness is contagious, the government quarantines the victims in an abandoned, dilapidated mental asylum, with orders that anyone attempting to leave is to be killed immediately. The prisoners are supposed to be given food and supplies, but food deliveries are inadequate and increasingly become irregular. The asylum becomes filthy because the blind inmates, as portrayed in the movie, cannot find their way to the bathroom and simply relieve themselves on the floor or in their own beds. Some of the inmates die from infection, disease, or from gunshot wounds when they try to escape.
The blind are portrayed as being unable to do anything for themselves. As food supplies diminish, one group of blind inmates, whose leader has acquired a gun and proclaims himself "the king of Ward Three," begins to terrorize the others. The armed clique in ward three hordes all the food, extorting money and valuables from the other inmates and eventually demanding sex with the women from other wards in exchange for allowing the rest of the inmates to eat. One of the women is beaten to death as she is raped.
One of the members of this clique, who was born blind and is not a victim of the “white sickness,” knows how to read and write braille and is given the task of taking inventory of the valuables stolen from the other inmates. Rather than helping the other inmates adjust to their blindness, he uses his knowledge of how to function as a blind person to assist the criminal gang.
The rest of the inmates finally decide they have nothing to lose and do battle with the gang in ward three. During the fight, someone sets fire to a pile of bedding; the fire soon engulfs the entire asylum. When the surviving inmates escape the burning asylum, they discover that no soldiers are standing guard and they are free. Outside the makeshift prison, everyone has gone blind and the city has descended into total chaos; no government services or businesses are functioning, and nomadic groups of mostly naked blind people wander through the streets, squatting in abandoned houses and shops for shelter and taking food where they can find it --including in rubbish heaps. There is no electricity or running water, so the streets and buildings of the city are as filthy as the asylum was. Gradually, people begin to regain their sight just as suddenly and mysteriously as they went blind.
From this description, it is quite obvious why blind people would be outraged over this movie. Blind people do not behave like uncivilized, animalized creatures. Admittedly, blindness can be a frightening experience to those who lose their eyesight. However, there is an enormous amount of assistance that is available to newly blinded people. There are support groups around the country, such as the more than 70 affiliates and chapters of the American Council of the Blind. There are also all kinds of assistive devices, equipment, and aids specifically designed and produced to assist blind people with their daily living such as computers that talk, braille and talking watches and other time pieces, kitchen aids like the talking microwave, devices that can detect and tell the blind user the color of his/her clothes, and thousands of digitally recorded audio books, and much more.
Most blind people lead normal lives, just like everyone else. The only difference is that they simply cannot see. But their other senses work just fine, and they learn to replace the lack of eyesight with the keen use of their other senses.
The American Council of the Blind is a national membership organization. Its members are blind, visually impaired, and fully sighted individuals who are concerned about the dignity and well-being of blind people throughout the nation. Formed in 1961, ACB is one of the largest organizations of blind people in the world, with more than 70 state and special-interest affiliates and a nationwide network of chapters and members spanning the globe.
For more information about the American Council of the Blind, contact Melanie Brunson, Executive Director, American Council of the Blind, 1155 15th St. NW, Suite 1004, Washington, DC 20005; phone (202) 467-5081 or toll-free 1-800-424-8666; or visit the web site, www.acb.org.

There is also a FAQ detailing how the movie portrays blindness and why the portrayal is problematic. Here's one question and answer (among many):

Q: What is wrong with the way blind people are portrayed in the film?
A: Blindness falsely depicts blind people as incapable of almost everything. Even accepting that most of the characters are newly blind and thus have not learned certain skills needed to function effectively as a blind person, their complete and utter incompetence is simply not credible to anyone who has had even casual contact with actual blind people. The blind people in the film are unable to dress or bathe themselves; they usually go about naked or nearly naked and relieve themselves on the floor or in their own beds. The doctor’s wife is shown helping him dress by holding his pants so that he can step into them, and he comments at one point that she even has to clean him after he has defecated.

In reality, even newly blinded individuals do not experience this level of incapacity; they do not forget how to dress, wash, or use the toilet. The blind people in the movie are portrayed as perpetually disoriented and having no sense of direction or ability to remember the route from one place to another. However, blind people regularly travel independently using white canes or guide dogs. The blind people who are not completely helpless in the novel and movie are depraved monsters, withholding food from the others in exchange for money, jewelry, and sex. One of the worst of these criminals is a man who was born blind and has adapted to his blindness, yet he sides with the criminal gang of ward three, participating in brutal rapes and attempting to kill inmates from the other wards. Thus, all of the blind people in the film are portrayed either as helpless invalids or degenerate criminals. The movie suggests that blindness completely alters the human personality, resulting either in total incapacity or villainous evil.

The movie also makes it clear that blindness is cause for complete and irreversible despair; one blind man comments, “I’d rather die than stay like this.” Blind people, in fact, do live happy lives once they have learned to accept their blindness and adjust to it. The movie also suggests that the blind must always defer to the sighted; when the doctor’s wife leaves him outside a supermarket so she can attempt to find food, he says, “I know my place.” The dignity, worth, and individuality of blind people is constantly denigrated in this way throughout the movie.

The National Federation of the Blind objects to this portrayal of the blind because it simply isn’t accurate. Blind people are a cross-section of society who happen to share the physical characteristic of being unable to see. The blind are employed in almost every profession imaginable, have homes and families, raise children, do volunteer work in their communities, and generally lead normal, productive lives. To the extent this is not the case, the problem is not blindness itself, but rather the misconceptions and stereotypes that society holds about blindness and blind people. This film will further those myths and misconceptions and deepen public prejudice against the blind. Most members of the public do not know a blind person and may therefore assume that this portrayal of blindness is accurate and true. It is not, and the falsehoods in this film will damage the prospects for equal opportunity, productivity, dignity, and happiness for blind people throughout the world.

As a person of a writerly bent myself, I tend to think that people have the right to make any art they want and make any statements they want in it. But I also think that it's very important that when an artist does get reality wildly wrong (whether because she's ignorant herself or because she doesn't care because her story's better told if the world works differently), people know going in that what they're seeing is unrealistic.

Hearing about this movie, it does seem like it will be presented in a dreamlike/nightmarish way, but I don't know that that's enough. A lot of people who don't have disabilities -- or who have one disability but not another -- find themselves terrified of disability. This movie and book, in fact, seem like that's what they're about: how horrible it would be to go blind. But the makers of this piece either don't know or are conveniently ignoring that this isn't what would happen at all... and people who see this who don't know how capable blind and visually impaired people are (my boss is blind and a lawyer) are going to see this and think "No one can find a bathroom without the help of his retina." Really?

If it were blatantly obvious how unrealistic that is I'd be more comfortable. But, well, even people who know it's not quite realistic may have fears and prejudices that this plays to, and I don't like that.

But I don't feel as strongly as I did about Tropic Thunder about this. TT has implications: what's it OK to joke about? This is a horror movie, or a creepy drama at least, and that plays on fears. And sighted people do fear blindness, for a host of reasons some of which are all about prejudice and some of which are probably understandable anyway. I'm sure I'd be frightened if I awoke one morning and saw nothing. I use my eyes for a lot.

But how can we talk about that without carrying those messages: blindness means this, this is what blindness is like? I really am not sure.

Color me glad I don't live in the UK

Alexa — Fri, 26 Sep 2008 18:41:00 GMT

The Mary Warnock flap: Baroness Warnock, commenting on dementia, suggested that people who have it have a "duty to die" so as not to burden family and society with their disease:

When Dr. Jonathan Groner, a surgeon and ethicist at Ohio State University, heard of a suggestion by a well-known British philosopher that those with dementia have a "duty to die" in order to minimize the burden they place on society and their families, he was troubled.
First, there were the moral implications of the comments that 84-year-old Baroness Mary Helen Warnock shared with the Church of Scotland's Life and Work magazine last week, in which she stated, "If you're demented, you're wasting people's lives -- your family's lives -- and you're wasting the resources of the National Health Service."
Such a policy could put society on a slippery slope, he said. And he noted many of the potential moral pitfalls accompanying the suggestion that those suffering from dementia should make a decision to end their own lives.
But Groner said losing his own father to Alzheimer's in January has perhaps given him the most insight into the issue -- and why the lives of dementia sufferers must not be devalued.
....Groner is not alone in his opinion. Ethicists and Alzheimer's advocacy groups alike are expressing outrage over Warnock's comments last week, which echoed the opinion she put forth in an article she authored for a Norwegian periodical, titled "A Duty to Die?"
"The suggestion made by Baroness Mary Warnock is ignorant, insensitive and cruel, and denies the humanity of people with Alzheimer's and dementia," the Alzheimer's Association said in a statement issued Wednesday.
"We dispute the fact that if you have dementia or some part of Alzheimer's that you cannot have a quality lifestyle," noted Paul Williams, director of public policy for the Assisted Living Federation of America. "We've seen in the last 10 years that these residents have been able to have the most independence and the quality of life that can be expected of them. ... Just because you have a memory disease [doesn't mean] that we let you die and we can kill you."
And Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said he was "shocked" by the comments when he read them.
"No one has a duty to die," he said. "The notion that society should 'expect' someone to end their lives because they fear being a burden upon others is simply ethically repugnant."
....Mehlman added that Warnock is not the first to put forward the idea of limiting health care for the elderly. In 1987, American bioethicist Daniel Callahan expressed a somewhat similar idea in a book titled "Setting Limits."
"Callahan advocated that Medicare stop paying for the elderly after they reached a certain age," Mehlman said. "Although Callahan was not absolutely clear on this, it appeared that the cut-off age was to be around 82. ... Callahan was roundly criticized for his view, including by me."
And in at least one instance in recent history, Groner said, such Machiavellian principles have been put into practice.
"In the beginning of the era leading up to World War Two, Hitler decided that he would need more hospital beds," he said. "If you were an individual with dementia or a child with a deformity, you didn't stand a chance."

Does anyone know where I can find a copy of the Baroness' actual article? I'd like to be able to quote the exact things she said.

As far as commenting on this, I've said before that I don't understand why people with disabilities dying is supposedly so selfless and heroic. Why are our deaths so wonderful to some people? What is it they don't want to deal with?

President Bush Signs ADA Amendments Act

Alexa — Thu, 25 Sep 2008 23:27:00 GMT

(Yes, I missed posting when the House bill passed.)

Re-posted from Adawatch.org e-newsletter:

NEWS RELEASE
September 25, 2008

ADA Watch and the National Coalition for Disability Rights Praises Advocates and Policymakers As President Bush Signs ADA Amendments Act into Law

(Washington, DC) For nearly two years, disability rights advocates have traveled the Nation in a modified bus educating citizens and policymakers alike of the pressing need to restore vital civil rights protections of the Americans with Disabilities Act (ADA).

Today, President Bush signed the ADA Amendments Act into law and ADA Watch and the National Coalition for Disability Rights, the nonprofit organizations behind the Road To Freedom bus tour, praised all of those involved in this successful campaign to advance disability rights.

In recent years, the ADA - the world's first human rights law for people with disabilities - has been dramatically narrowed in the courts leaving citizens with epilepsy, diabetes, mental illness, HIV-AIDS and other disabilities unprotected from discrimination. The ADA Amendments Act clarifies the intent of Congress and reverses the "judicial activism" that has resulted in more than 95% of employment-related ADA cases being dismissed on summary judgment.

Senator Tom Harkin (D-Iowa), lead sponsor of the ADA Amendments Act, acknowledged ADA Watch/NCDR's role in passage of this legislation on the floor of the Senate, thanking the Road To Freedom's crew for "dedicating almost 2 years of their lives traveling on a bus around the country to every State, showing people about the importance of restoring the protections of ADA."

ADA Watch/NCDR founder and president, Jim Ward stated today, "This is a monumental victory for people with disabilities. As America seeks to respond to the economic challenges we face, this law - if enforced - will ensure that people with disabilities are fairly included in the workforce and that we can do our jobs free from discrimination."

"ADA Watch and the National Coalition for Disability Rights praises the thousands of Americans who produced and participated in Road To Freedom bus stops as, together, we called for restoration of the ADA. Likewise, we praise the tireless efforts of advocates such as Andy Imparato, Sandy Finucane, Curt Decker, Chai Feldblum, Jennifer Mathis, Arlene Mayerson, Shereen Arent, Donna Meltzer, Nancy Zirkin, Michael Collins, Yoshiko Dart, Tom Olin, Debbie Fletter Ward and so many others."

ADA Watch and the National Coalition for Disability Rights (NCDR) is a coalition of national, state and local disability, civil rights and social justice organizations united to protect and promote the human rights of children and adults with physical and mental disabilities. For more information, go to www.adawatch.org and www.roadtofreedom.org

"What's Up With That?": Parents of Children With Disabilities

Alexa — Tue, 23 Sep 2008 14:05:00 GMT

Last night, coming back from taking the dog to the park, I heard NPR's "This I Believe" on the radio. A man whose daughter has Down syndrome was talking about how he'd been afraid based on the results of the amnio, thought he couldn't handle having a daughter with Down syndrome, etc. Of course he came to change his mind, and see his previous feelings as results of his fear. In general, I thought it was good and positive. But something in it caught me:

I distinctly remember saying, "I don't want this." I didn't want this situation. I didn't want this responsibility. I didn't want to become one of those parents — the parents of a child with a disability.

I don't have trisomy-21, but I have to say it's really weird to hear someone talk about parents like mine ("the parents of a child with a disability") this way: those parents. As if my parents are weird, strange, not normal because they fought for my life. Because they love me. Because they didn't think twice about whether they wanted me or not and just didn't want to lose me like they lost the other baby.

I know this guy's mind changed, and I respect that. But I have to say that sometimes discovering what people without disabilities think of us is chillingly illuminating. Even our parents -- who can be people without disabilities at all -- are those parents until proven otherwise.

Honestly, I think this "parents" thing is the creepiest part of the talk. I can deal with people having weird prejudices about me myself and I usually, but hearing this about parents just really bothered me. Yeah, there's plenty I can rag on my mom and my dad for, like any other child of anyone ever. But they're my parents! They're not some weird hyperaltruistic aliens, who decided I was worth keeping because they're better, more selfless, more kind than normal humans. They're people. Who had a kid. Who they love.

Last I checked, that right there is the story of a lot of parents out there. No "those" necessary.

Re-post of Prof. Longmore's Obama/McCain/Palin essay

Alexa — Wed, 17 Sep 2008 03:46:00 GMT

For some reason Disaboom doesn't seem to want to publish the edits I've made to the previous post, so I've decided to just post it again. The link to the rest of Prof. Longmore's article should work now.

Found this excellent and thought-provoking article via FRIDA and decided I had to share it here.

What Kind of Advocacy Do Americans with Disabilities Really Need?
By Paul K. Longmore

Ever since Sarah Palin’s acceptance speech, the “needs” of children with disabilities have gotten a lot of press. Palin pledged to be a “friend and advocate” for those children. News stories have reported the excitement of parents and other people in the disability rights constituency that disability issues are finally getting some attention. Some of them have decided to support the election of Palin and John McCain. But do the Republican candidates offer the kind of advocacy Americans with disabilities really need? I don’t believe they do, and I want to explain why I am voting for Barack Obama and Joe Biden instead.
Before that, I should probably explain a bit about myself. I know what it is like to grow up as a child with a significant disability. And I’ve certainly known how hard it can be as an adult. I had polio as a boy. I’ve used a ventilator for many decades now and driven a power wheelchair for the last seven years. I have no use of my arms. I employ personal assistants to do housekeeping and aid me with basic personal needs. I struggled for years with oppressive bureaucracies and unfair public policies such as work disincentives.
I recounted those battles in Why I Burned My Book and Other Essays on Disability (2003). Because of the disability rights movement and despite most government policies, I finally achieved my main goal and became a professor of American history at San Francisco State University. Because of what I’ve had to deal with, I also became a disability rights activist and a disability studies scholar.
Looking back, I can see how difficult it all was for my parents and what little support they got. It is understandable that parents of children with disabilities would clutch at Sarah Palin’s promise to be an “advocate.” Many ofthem are increasingly desperate. Last month a University of North Carolina at Chapel Hill study documented the “chilling” rates of “hardship” among middle class as well as poor families with disabled children. They “are struggling to keep food on the table, a roof over their heads, and to pay for needed health and dental care.” (1) Large numbers of adults with disabilities face the same economic hardships.
We’ve made a lot of progress in disability rights, but in some ways it’s even harder financially for people with disabilities and their families than it was when I was a child, a youth, and a young adult. From both my personal experience and professional work, I understand what it’s like for a lot of us. And I think I have some grasp on what sort of advocacy we need.
Would Palin provide that kind of advocacy? Would a President John McCain support the needs, interests, and rights of Americans with disabilities? What about Barack Obama and Joe Biden?
In their convention speeches, Palin, John, and even Cindy McCain focused only on children. The media have talked almost exclusively about children too. What so many people seem to forget is that children with disabilities grow up to become adults. Ninety percent of the 54 million Americans with disabilities are adults. Most acquired their disabilities after childhood.
In addition, the media talk has mostly been about “compassion” not about “issues.” There has been little discussion about issues that matter to people with disabilities of all ages, issues such as health insurance, community-based personal assistance services, education, employment, and civil rights. Research has repeatedly found that voters in the disability constituency — adults with disabilities, parents, and many professionals — decide how they will vote based on candidates’ positions on disability issues. But they are often frustrated in trying to get that information.
In what follows, I summarize and critically examine the information I have gathered about the candidates’ stands. I have gleaned it from online and printed sources as well as contacting some of the leading experts in the various communities that compose the disability rights constituency. Some of the information out there in the blogosphere is wrong. I’ve tried to get accurate and reliable information instead. Sometimes those experts I mentioned set me straight about things I had thought were true that they said were incorrect. It strikes me as significant that as far as I can tell the vast majority of those experts and other disability rights leaders are supporting the Obama-Biden ticket.

The full text of Professor Longmore's commentary is here.

Paul K. Longmore is a professor of history and director, Institute on Disability, at San Francisco State University.

Obama vs. McCain: Who really cares about disability rights?

Alexa — Tue, 16 Sep 2008 12:36:00 GMT

Found this excellent and thought-provoking article via FRIDA and decided I had to share it here.

What Kind of Advocacy Do Americans with Disabilities Really Need?
By Paul K. Longmore

Ever since Sarah Palin’s acceptance speech, the “needs” of children with disabilities have gotten a lot of press. Palin pledged to be a “friend and advocate” for those children. News stories have reported the excitement of parents and other people in the disability rights constituency that disability issues are finally getting some attention. Some of them have decided to support the election of Palin and John McCain. But do the Republican candidates offer the kind of advocacy Americans with disabilities really need? I don’t believe they do, and I want to explain why I am voting for Barack Obama and Joe Biden instead.
Before that, I should probably explain a bit about myself. I know what it is like to grow up as a child with a significant disability. And I’ve certainly known how hard it can be as an adult. I had polio as a boy. I’ve used a ventilator for many decades now and driven a power wheelchair for the last seven years. I have no use of my arms. I employ personal assistants to do housekeeping and aid me with basic personal needs. I struggled for years with oppressive bureaucracies and unfair public policies such as work disincentives.
I recounted those battles in Why I Burned My Book and Other Essays on Disability (2003). Because of the disability rights movement and despite most government policies, I finally achieved my main goal and became a professor of American history at San Francisco State University. Because of what I’ve had to deal with, I also became a disability rights activist and a disability studies scholar.
Looking back, I can see how difficult it all was for my parents and what little support they got. It is understandable that parents of children with disabilities would clutch at Sarah Palin’s promise to be an “advocate.” Many ofthem are increasingly desperate. Last month a University of North Carolina at Chapel Hill study documented the “chilling” rates of “hardship” among middle class as well as poor families with disabled children. They “are struggling to keep food on the table, a roof over their heads, and to pay for needed health and dental care.” (1) Large numbers of adults with disabilities face the same economic hardships.
We’ve made a lot of progress in disability rights, but in some ways it’s even harder financially for people with disabilities and their families than it was when I was a child, a youth, and a young adult. From both my personal experience and professional work, I understand what it’s like for a lot of us. And I think I have some grasp on what sort of advocacy we need.
Would Palin provide that kind of advocacy? Would a President John McCain support the needs, interests, and rights of Americans with disabilities? What about Barack Obama and Joe Biden?
In their convention speeches, Palin, John, and even Cindy McCain focused only on children. The media have talked almost exclusively about children too. What so many people seem to forget is that children with disabilities grow up to become adults. Ninety percent of the 54 million Americans with disabilities are adults. Most acquired their disabilities after childhood.
In addition, the media talk has mostly been about “compassion” not about “issues.” There has been little discussion about issues that matter to people with disabilities of all ages, issues such as health insurance, community-based personal assistance services, education, employment, and civil rights. Research has repeatedly found that voters in the disability constituency — adults with disabilities, parents, and many professionals — decide how they will vote based on candidates’ positions on disability issues. But they are often frustrated in trying to get that information.
In what follows, I summarize and critically examine the information I have gathered about the candidates’ stands. I have gleaned it from online and printed sources as well as contacting some of the leading experts in the various communities that compose the disability rights constituency. Some of the information out there in the blogosphere is wrong. I’ve tried to get accurate and reliable information instead. Sometimes those experts I mentioned set me straight about things I had thought were true that they said were incorrect. It strikes me as significant that as far as I can tell the vast majority of those experts and other disability rights leaders are supporting the Obama-Biden ticket.

The full text of Professor Longmore's commentary is here.

Paul K. Longmore is a professor of history and director, Institute on Disability, at San Francisco State University.

Senate Passes ADA Amendments Act

Alexa — Sat, 13 Sep 2008 01:02:00 GMT

I'd written a lengthy post on the news that the Senate passed the ADA Amendments Act yesterday, but apparently Disaboom devoured it.

So I'll just say Hooray!

Prenatal Testing, Sarah and Trig Palin, and being a staunchly pro-choice Dem

Alexa — Fri, 12 Sep 2008 03:01:00 GMT

I do not like Sarah Palin. I do not like her stance on abortion (I'm pro-choice about non-selective abortions, and think that trying to regulate selective ones is impossible, so I suppose that makes me technically pro-choice there too. I can't imagine even a pro-lifer thinking it's OK to force a traumatized youth to carry her rapist's child to term.) I do not like that she even hinted that banning books could ever make sense (the 1st Amendment, it's your friend!) I do not like that she opposes stem cell research and gay marriage (why can I only marry some of the people I might love?) I do not care about her gun, but it certainly doesn't endear me to her. I do not like that she called this war God's plan. I do not like that she doesn't know that "under God" in the Pledge of Allegiance comes not from the Founding Fathers, but from 1954. I don't like that she is open to schools teaching creationism (should we also teach other theories science has rejected, such as that the sun revolves around the Earth?) I don't like that she is in favor of abstinence-only sex education (being young is about taking risks; harm reduction is the only appropriate tack to take with young people eager to experience things.)

I could go on and on. So I didn't like the idea of liking anything about her.

Then I read an article in the Washington Post, about how her son Trig (who has Down's syndrome), and the media exposure he's gotten, have been a positive step for people with disabilities and for the movement for disability rights.

And I can't disagree. I still don't want her to be the vice president, but I can't disagree.

In addition to Barack Obama making history as the first African American to be nominated for president and Sarah Palin taking her shotgun to the glass ceiling, there was a third civil rights barrier broken at the political conventions this year.

Trig Paxson Van Palin -- pronounced by his mother "beautiful" and "perfect" and applauded at center stage of the Republican convention -- smashed the chromosomal barrier. And it was all the more moving for the innocence and indifference of this 4-month-old civil rights leader.
....Trig's moment in the spotlight is a milestone of that movement. But it comes at a paradoxical time. Unlike what is accorded African Americans and women, civil rights protections for people with Down syndrome have rapidly eroded over the past few decades. Of the cases of Down syndrome diagnosed by prenatal testing each year, about 90 percent are eliminated by abortion. Last year the American College of Obstetricians and Gynecologists recommended universal, early testing for Down syndrome -- not just for older pregnant women. Some expect this increased screening to reduce the number of Down syndrome births to something far lower than the 5,500 we see today, perhaps to fewer than 1,000.
....This is properly called eugenic abortion -- the ending of "imperfect" lives to remove the social, economic and emotional costs of their existence. And this practice cannot be separated from the broader social treatment of people who have disabilities. By eliminating less perfect humans, deformity and disability become more pronounced and less acceptable. Those who escape the net of screening are often viewed as mistakes or burdens. A tragic choice becomes a presumption -- "Didn't you get an amnio?" -- and then a prejudice. And this feeds a social Darwinism in which the stronger are regarded as better, the dependent are viewed as less valuable, and the weak must occasionally be culled.

The protest against these trends has come in interesting forms. Last year pro-choice Sen. Edward Kennedy joined with pro-life Sen. Sam Brownback to propose a bill that would have required medical professionals to tell expectant parents that genetic tests are sometimes inaccurate and to give them up-to-date information on the quality of life that people with Down syndrome can enjoy. The bill did not pass, but it was a principled gesture from Rosemary's brother.
Yet the pro-choice radicalism held by Kennedy and many others -- the absolute elevation of individual autonomy over the rights of the weak -- has enabled the new eugenics. It has also created a moral conflict at the heart of the Democratic Party. If traditional Democratic ideology means anything, it is the assertion that America is a single moral community that includes everyone. How can this vision possibly be reconciled with the elimination of children with Down syndrome from American society? Are pro-choice Democrats really comfortable with this choice?

As a pro-choice feminist, I've struggled with this as well. I've had other feminists become truly hostile when I've suggested that the way the abortion issue is framed in such circles is worrisome. I've stood up in front of people and tried my hardest to get them to see how razor-close they dance to supporting modern-day eugenics when they insist "But maybe she can take care of a nondisabled child, but not one with Down's. Are you mean enough to make her face that burden?" And it's hard. People who support "the right to choose" take that right to be so absolute that even asking why certain choices are made and if they're coerced can get you in hot water.

And Palin has made this whole thing visible. She's shown us all her son, shaken her head, and said "None of that, now." She's made it such a visible issue that a writer for the Washington Post is coming right out and calling these abortions "eugenics." People will read that, and think about that. Many of the pro-choice feminists I stood up in front of and said this to will read it.

Maybe it will begin to sink in. Maybe the whole movement will have to re-think how it frames reproductive rights.

And to that I can only say "Thank you, Sarah Palin."

GOP: "What disabled people?"

Alexa — Tue, 09 Sep 2008 01:01:00 GMT

Anyone know where the blog post is that compares the Republican and Democratic positions on disability? I found it the other day, but now can't seem to find it again. The only thing I remember in it was that while both platforms mention PTSD, only the Dem platform mentions TBI. That stuck out for me because McCain is a vet. I'd think he'd be all over those particular issues!

Anyway, here's an interesting (long) excerpt from a somewhat old article that I saw recently. I think it was linked on Disabled Politico, though I can't find it now:

In an election that has all the trappings of being the most contentious in recent history, GOP candidates have steadfastly ignored the issues affecting disabled Americans at every step along the way, and have taken little flack for doing so. Composed of over 50 million Americans, the disabled community represents a huge segment of the voting populace. Its members have been drastically affected by the federal government’s inability to protect them from discrimination under the American Disabilities Act (ADA)—a statute that has been eviscerated by a narrow Supreme Court interpretation—leading to overt and legal discrimination in the workplace. Of the severely disabled, over 26% reside in poverty and only 13% are able to work. However, thanks to the passage of the Help America Vote act, every disabled individual—including the blind and deaf—will be provided with a reasonable opportunity to vote in 2008.

For these reasons, it seems strange that the Republicans appear to be surrendering the disabled vote to the Democratic Party, but their actions yield few if any other conclusions. In April of this year, the American Association of People with Disabilities (AAPD) sent out a packet of questions to all of the major presidential candidates. The inquiry was a collaborative effort that included the National Council on Independent Living and Self Advocates Become Empowered. Five Democrats, including frontrunners Hillary Clinton, Barack Obama, and John Edwards, returned the survey completed.

None of the Republicans candidates responded.

In early November, the AAPD hosted a candidate forum in New Hampshire where hundreds of individuals with disabilities came to listen to presidential hopefuls talk about their plans to provide equality, opportunity, and access to the disabled. “People with disabilities have a right to be full participants in all aspects of society," said AAPD President Andrew Imparto while at the forum. “We need leadership from the top,” he added.

So, who showed up at the AAPD’s presidential forum?

Seven of the eight major Democratic candidates and none of the Republicans except for John McCain, who was only able to participate by phone.

In a recent post on his assistive technology blog, disability columnist John Williams noted that no Republican candidates have responded to his inquires regarding disability as well. A visit to the Republican National Committee website reveals little to no mention of disability issues either, while the Democratic National Committee features a full section about disability issues on its site.

Neither the Democratic nor the Republican candidates emphasize disability issues on their specific campaign websites, but Democratic candidates have stressed their commitment to those with disabilities on numerous occasions. At the New Hampshire AAPD forum, front-runner Hillary Clinton promised to reinstate her husband’s executive order that called on federal agencies to hire 100,000 people with disabilities in five years. In the AAPD questionnaire, Obama, Edwards, former New Mexico governor Bill Richardson, and Connecticut Senator Chris Dodd all stated that they would appoint a permanent assistant to the President for disability policy, if elected.

In addition, three of the Democratic candidates have either suffered from or been directly affected by a disability themselves. Dodd, who authored provisions of the Help America Vote Act and co-sponsored the Americans with Disability Act in 1975, has taken much of his personal inspiration on the issue from his sister Carolyn, who is visually impaired. Former Alaska Senator Mike Gravel has publically talked about his struggle with dyslexia as a child, and Congressman Dennis Kucinich needed extensive speech therapy when he was in grade school to deal with a chronic stutter.

Can a GOP president show equal support for the disabled?

Despite its lack of response in the current electoral cycle, Republicans have championed a substantial amount of disability related legislation in the past. In a 2003 AAPD memo, President Jim Aparto praised the work of President Bush on disability issues and admitted that his organization hasn’t always been “even handed or fair” when assessing Republican contributions to disability issues. He went on to tout numerous appointments of disability champions by Republicans, and then reminded the public that it was George H. Bush who signed the ADA and Civil Rights Restoration Act into law in 1990.

In his tenure, Bush, along with the Republicans in Congress, also supported the Help America Vote Act, and a current effort to reinstate the intent of the ADA has attracted sponsorship and support from both sides of the aisle.

So, why are the Republicans so shy about stumping for the disabled in 2007?

Silliness For Obama

Alexa — Sat, 06 Sep 2008 17:14:00 GMT

I've seen Obama buttons and logos in every conceivable variation. Some use the "O" logo with the flag in it in clever ways. For example, I've seen "Gays and Lesbians for Obama" with the gay pride flag in the middle of the "O" logo.

I have not, however, seen "Americans With Disabilities for Obama" with the "O" logo as the wheel of the accessibility logo wheelchair guy.

This is a horrible oversight! Someone needs to remedy this!

Dear Democratic Party: I'll give you the donation you keep pestering me for if you make me a button!

Jobs

Alexa — Sat, 06 Sep 2008 16:42:00 GMT

It's funny. When I was in graduate school, working endlessly on my degree, I felt like I was waiting. Inbetween school and the real world. I thought things like "Only two more years until I can make a difference."

It was almost like being at the DMV, in one of those endless lines, waiting for my number.

Now I'm out of that world and I've spent only three days in a job that relates to disability advocacy. And I've known every day that I no longer have to wait to make a difference any more.

I'm actually doing it.

That's the best feeling in the world.

Actually disability related (Election '08)

Alexa — Sun, 31 Aug 2008 19:52:00 GMT

In all the excitement about Gov. Palin and her child, I hope people don't forget this:

I'm writing to express the principal reason that I cannot support Senator John McCain and Governor Sarah Palin for the offices of President and Vice President of the United States.
While I believe that Senator McCain is a basically decent man, I do not believe that he understands the problems confronting Americans with disabilties or other serious medical conditions.
On Senator McCain's campaign website he states very clearly "John McCain Believes The Key To Health Care Reform Is To Restore Control To The Patients Themselves." In reality, he opposes the Community Choice Act which is based on the concept that the funding follows the patient, thereby empowering the individual. He is asked this question directly in this video.
I have come to understand how absolutely flawed the entire healthcare industry in the United States has become. I believe that ineptitude, greed and systemic corruption brought us to this state. America can and must do better. This is not just a healthcare issue. For people with disabilities, it is a matter of human rights.
The unarticulated public policy of impoverishing people with disabilities, who might otherwise be a productive part of society, must be abolished. Many people believe that the Americans with Disabilities Act (ADA) levels the playing field. The ADA was flawed from the start, borne of compromise and tried to impose a one-size-fits-all solution for the tremendously diverse group of people with disabilities. To make matters worse, since the ADA was passed, judicial decisions have weakened it to the point of it becoming irrelevant.
At the present time many potentially productive members of society are being warehoused in nursing homes which are funded by Federal dollars, little of which is spent on quality patient care. This can be changed by the Community Choice Act . We are in an election year and have two Presidential candidates who have come down on opposite sides of this issue. Senator Barack Obama is for the Community Choice Act; Senator John McCain is against it.
I hope that you all will take this into consideration when you cast your ballot.

I have seen quite a bit of enthusiasm for McCain/Palin here on Disaboom because McCain ostensibly has PTSD and because one of Palin's children has Down's syndrome. I've seen people say with great emotion that they really want someone who has a disability in the White House, and that isn't Barack Obama.

But in addition to feeling that there's no profit in choosing one of us over a black man as if our liberation were somehow more important than that of people of color (and as if none of us were POC ourselves!), I find this worrisome. Yes, I get the feeling that he (and Palin as the mother of a PWD) is "one of us" and that that's special.

But the thing is, voting for a President is voting for more than just a symbol. The President is not a figurehead; he is the head of the Executive branch of our country. He gets things done. And the things he needs to get done are the things that benefit us. And sadly for us, the person who is aware of what needs to get done and willing to get it done is not John McCain, if he doesn't support the Community Choice Act and flubs his way through telling disability advocates to their faces that there's just not enough money for our rights to be protected. It's not Sarah Palin just because her child has Down's, if she doesn't back it up with her support of legislation.

So I see all this excitement over McCain/Palin and I wonder just what folks want. Recognizable faces... or real change?