PhilosopherCrip

So, anyone who follows this blog must be curious about my MIA status.  Basically, my commitments to school, work, and activism have put this blog on the back burner.  I’ve still been thinking, but have had a hard time getting around to the part where I log in and type it all up.  I don’t have time to write an original essay right now (but will in a few days I do hope).  I think the words I pasted in below are more compelling than anything I could write anyway. They are the words of my brothers and sisters who were arrested at the U.S. Capitol at the end of April.  They were arrested for performing acts of non-violent civil disobedience to raise public awareness of the incarceration of thousands of people with disabilities in institutions against their will.  They are the stories of personal motivation and public defiance.  Please read these stories and, if you can, donate whatever you can to the ADAPT legal defense fund, so we can continue to speak truth to power.  FREE OUR PEOPLE!!!!   http://www.adapt.org/donate.htm

Sentencing Statements by 38 ADAPT defendants, in front of Judge Keary, DC Superior Court, Washington, DC on May 20, 2009, in the case of United States of America v. Pamela Aver, et. al., Docket #2009-CDC-10565, et. al., following a guilty plea to unlawful assembly, and failure to obey a lawful order, for a protest at the United States Capitol on April 28, 2009:

Lantonya Reeves says: My physical disability is cerebral palsy & legal blindness. I had to move from Tennessee to Colorado because I needed attendant services & support. I had to leave my family & friends so I didn’t end up in a nursing home. I was at the Action at the Capitol because I was advocating for the COMMUNITY CHOICE ACT. This legislation will cover all the states so that disabled people will not have to be institutionalized in nursing homes. …Over a hundred ADAPT members [were] arrested. This is because we, ADAPT strongly believe that people in nursing homes should have the right to choose where they live. –

My name is Shelly Perrin and I have Cerebral Palsy and can’t walk. I live in Rochester, New York. I was in an institution from the age of 7 to 13. My parents finally got me out when I was 13 years old. When my parents passed away I was forced into a group home for about 12 years. Thanks to Cerebral Palsy Rochester I learned a lot of independent living skills. After learning these skills I no longer wanted or needed people to control my life. I moved out of the group home in 1997 and have been on my own; in my own apartment since that time. I have lived in an institution and I know how terrible the conditions are; I feel that it is my duty to help people get out of nursing and group homes. We must have the Community Choice Act signed into law. I was in the street with ADAPT to get our point across since the regular ways to show the government that an issue is important to us and society have not been successful. I am very disappointed that President Obama does not support the Community Choice Act. We must get this law passed to end the institutional bias in Medicaid and allow people to live independently in the community. I will not sit quietly watching people with disabilities to be put in nursing homes against their will.

Pam Auer is a 39 year old native of Kersey, Pennsylvania. She has had a physical disability, spina bifida since birth. Pam has been married for 12 years to Michael Auer, also a person with a disability, and has a 10 year old daughter Kristin. She and her family reside in Harrisburg, Pennsylvania.The media’s attention was brought to the need for the Community Choice Act and the Obama Administration’s pre-election promise for implementation. It is a civil rights issue, not an additional service requested to be implemented. My convictions on the seriousness of the issue led me to group advocacy and up to committing civil disobedience.

My name is Louis Patrick. I was born in Memphis in 1947. I had polio in 1950; as a result I have paraplegia and currently use a wheelchair full-time to get around.
I came to Washington in April in hopes of helping to get the Community Choice Act enacted into law. I grew up and went to school with a number of youngsters with disabilities who were funneled into a local nursing home very early in life. In the course of working at my local center for independent living, and serving on its board, I’ve met, worked with and heard of many, many more persons with disabilities who’ve gotten trapped in nursing homes because of the lack of services available in our state. The Medicaid law needs to be changed to end the bias of putting people in nursing homes. I hope the presence of all of us with ADAPT helped to make the President and Congress more aware of the needs of a group of people whose voices are not usually heard and whose interests are usually misrepresented. It is long past time when people should have the choice of remaining in their own homes.

My name is Melanie Boyte, I have Cerebral Palsy (CP) in my life I have been told I can not do a lot of things. They were wrong!!!!!!!! I was told I was not able to live when I got cp, but now I’m a 33 year old, single mom of a great son and he already makes me so proud, nobody is different to him…. The Community Choice act will help in so many ways, and help so many people. I know things in politics do not happen over night, but we have been asking for 12 years…!!!!!!! I do believe that by all of us being there at the Capitol made a lot of people notice.

My name is Bob Kafka. I am a 63 year old spinal cord injured Vietnam veteran that uses a motorized wheelchair for mobility. I was born in NYC but have lived in Texas for 41 years.
I came to DC excited that a new Administration might finally commit to ending the institutional bias in Medicaid that has resulted in forcing people into nursing homes and other institutions. Lives of children, young adults and older people have been ruined because of the policies of this country. Something needed to be done to bring about change. I needed to be part of that change.Though we didn’t get the Administration or Congress to definitely say YES to eliminate the institutional bias- we did send a message that the community wants them to act and we will keep them accountable. If our efforts keep one person out of an institution it begins/continues the changes that must occur.

Julie Maury in handcuffs, driven by the memory of her lost love.

My name is Julie Maury. I am 27 years old and from New York City. I have Cerebral Palsy. In 2006, my boyfriend, Michael, of six years died of a bedsore that caused Sepsis, which then caused organ failure. He was in a Nursing Home. It was preventable – he did not have to die. But, it is very hard to prove Nursing Home neglect when one already suffers from Paralysis and other chronic health issues, as Michael did. He was hospitalized for a health issue, and while there, the staff, like bad car salesmen, convinced him to go into a Nursing Home. They “sold” the living in a Nursing Home idea to him like it was going to be Heaven. However, the nursing home was a nightmare from Hell. Michael would say in the Nursing Home: “Why is everyone telling me: It’s ok to ‘let go?’ I love life. I love the trees; I love the birds….”
I came to Washington DC to give a ‘voice’ and some kind of justice to those who have died from Nursing Home abuse and neglect. I came to Washington DC because I want people to have a choice as to where they want to live. I also came to DC for people who are not disabled and poor. I want people, in every State, to have the option to be cared for in their own homes, not Nursing Homes. And, that is exactly what the Community Choice Act will accomplish if it is passed. I was in DC fighting, with hundreds of my peers, to pass The Community Choice Act. I think that, for anyone, to have the ability to choose where you want to live, is an inalienable Human Right. I am proud to fight for the passing of The Community Choice Act.
I know, for a fact, that many people in Nursing Homes were comforted, and empowered, by our actions in DC. I think that we let President Obama know that it is not alright to break a promise to any of his constituencies; disabled or not. I think that we let the world know that we want people freed from nursing homes and other institutions now. We reminded able-bodied people that we exist and we want to work, have homes, get married and have children, just like others. People with disabilities want the American Dream too and we are capable of having it. Living the American Dream is not possible from a nursing home. Some people don’t want The American Dream. They just want to choose simple things like what to eat and when to go to bed-those things are not even possible in a nursing home. We let people know those facts. We helped raise consciousness.

My name is Jeremiah O’Dell. I live in Topeka, Kansas, and I am 25 years old. I started having seizures seemingly out of the blue when I was 22 years old. My health insurance was almost immediately terminated. I lost my maintenance job at the mall, and haven’t been able to go back to work since. I had to move back in with my parents at 22 years of age because I cannot afford to get my medications every month, and pay rent, so I had to give up my apartment. This has put my parents in a huge bind financially and emotionally. I am unable to work, and my Social Security case is still pending- now in year three. I receive a little bit of money from the State of Kansas- this assistance, though greatly appreciated is not nearly enough to survive, but it helps. I live in Kansas; I don’t get the opportunity to come to D.C. that often so when I do I make the best of it. Because of the ADAPT events that occurred on April 27th and 28th, to bring the issue out and in to the forefront, Representative Lynn Jenkins (KS), signed on to the Community Choice Act as a Co-Sponsor a couple of weeks after we left. I also believe because of the attention that our actions received, around D.C. in particular, people can clearly see that this issue is more than just politics for a whole lot of people it is real life!

My name is Damon Martin I have Cerebral Palsy and I am from Philadelphia, Pennsylvania and I am one of the many ADAPTers that were arrested in Washington, D.C. I was arrested I believe, because I fought for “Life, Liberty and the pursuit of Happiness…” As it states in the ‘Declaration of Independence. How can any person Disabled or otherwise, attain any of these essentials living in a nursing home? A long time family friend of mine died literally kicking and screaming in a nursing home.
Hopefully with this new administration now in the White House they will see with the passage of the Community Choice Act (CCA) as we ADAPTers do that health care reform must include CCA to truly be reformed health care. Sadly, this act has not been passed into law. If my show of civil disobedience can bring light to the ongoing struggle that The Disabled Community has fought for several years then I say loud and clear: I’D RATHER DIE IN JAIL, THAN LIVE IN A NURSING HOME!!

My name is Barbara Marlnee from El Dorado, Kansas. I am employed by the Resource Center for Independent Living (RCIL) as a targeted case manager for the Home and Community Based Services Program for the Physically Disabled. My job is to assist these people to remain in their own homes in the community …. I have worked for RCIL for 10 1/2 years in this capacity and strongly believe in the Deinstitutionalization philosophy. The programs that exist that allow people to remain in their own homes and receive their care are amazing. I feel a great sense of obligation and passion to do whatever I can to keep these programs alive. I do this for the people who need the services now; but also for all of us who may at any time find ourselves in similar circumstances. Our homes, not nursing homes. I came to the Capitol in order to specifically take part in the Adapt Action and support Disability Rights. Our goal … was focused on getting the Community Choice Act included in the National Health Care Reform thus allowing people to have a true choice of where they receive services.
I believe that we were able to once again send the message loud and proud that we will not go away.

Ruben Fernandez, born May 30, 1966, and life-long resident of El Paso , TX . His condition is Severe Cerebral Palsy requiring assistance with basic hygiene and body functions. He has worked for several companies and volunteers for many disability organizations, including ADAPT. Ruben insisted on appearing in the Washington, D.C Action to assert “My Rights.” As a result, he believes we achieved “La Lucha” (The Fight).

Hello, my name is Robert D. Liston. I live in Missoula, Montana and for the most part, I have been a lifelong resident of Montana. I was born and raised in Helena, and at the end of my junior year in high school, I was in a car accident, damaging my spinal cord at the high chest level, resulting in the use of a wheelchair for mobility for the past 38 years.
Following two and a half months in the hospital, I spent almost three months in a nursing home for “rehabilitation.” What I came away from that experience with was not rehabilitation, but the knowledge that nursing homes are where people go to die.
That is how I came to know about the nursing home experience, and I observed many things that are unfit for humans to endure—people sitting/lying in their own waste, sometimes for hours; staff stealing from people; staff handling people roughly because they didn’t like being there anymore than the residents; or some actually trying to do the right thing, but too many people to take care of for the number of people working.
The Great Fallacy about nursing homes is that they provide 24 hour care. In reality, people are lucky to get 2-3 hours a day of direct contact with a staff person, usually an aide.
Personally, I was in D.C. because one of my Senators (Baucus) is the chair of the Finance Committee and is the “leader” of any potential Health Care Reform. I wanted to impress on him, and the Administration, the essential need to include Long Term Services and Supports in any Health Care Reform, and to ensure that the Community Choice Act (our bill) is taken up by Congress and not forgotten because they are already dealing with Health Care Reform.
I firmly believe that if our government does not enforce the civil rights of a large segment of its society, then we, the people, must do what we have done—bring greater attention to the issue, by means of civil disobedience if necessary, to ensure that we continue to be part of the dialogue. We must keep momentum moving forward so that more people who are aging and/or with disabilities are not forced to lie in soiled sheets, and are not exposed naked to the world with no concern for our privacy or personal dignity, in nursing homes or ICF-MR’s (Intermediate Care Facility for persons with Mental Retardation). As an aging baby-boomer whose disability has progressed with age, I live in terror at the prospect of history repeating itself by being forced into a nursing home due to the current institutional bias in the nation’s Medicaid program.

My name is Patricia Ann Taggart. I am from Rochester, NY. I have Cerebral Palsy. I came to ADAPT because my sister and I are twins, and the system is so messed up that one of us can get long term support services and the other can’t. When we were arrested, suddenly the TV and newspaper reporters and cameras showed up and interviewed people, so a lot more people heard about the problems we are dealing with and about the Community Choice Act.

While we were ultimately successful at Senator Debbie Stabenow’s Lansing office this week, we definitely rocked the boat quite a bit, thus really upsetting some of the crew.  In fact, the Lansing contingent of MI-ADAPT’s bad behavior even earned us a phone call the next day to our state organizer from one of the senior staffers.  It felt something like when you get in trouble at school and get a phone call to your parents that evening.  Except, in this case, we could count on the recipient of the call to be in on the act instead of ready to send us to our rooms with no dinner.  For the moment, I’m going to put aside how absurd it is for a government official to call and chastise a direct action activism group (she works for the people and should be the one afraid of displeasing us).  Rather, I’m going to write a few quick words about why it is non-violent, direct action, civil disobedience is necessary in American politics and how it is so very effective.  That is, this blog will be aimed at readers who are confused or upset by the notion that someone might use civil disobedience to “strong arm” others in negotiations amidst a democratic society.  I will do this in the context of other struggles for liberation, partially as a tribute to Black History Month.

Let’s start by pointing out some big differences between the context of our use of civil disobedience and the more familiar and more widely accepted usages of it by 1960s era civil rights leaders.  At the most obvious level, there is a difference in who is committing the civil disobedience. This is nothing more than the simple observation that crips are not a racial minority.  Moreover, we do not have the same history as black Americans and the nature of our oppression, while sharing some structural similarities, is not the same.  While we are also fighting for the end to institutionalized segregation (in nursing homes) and violence (physical and emotional abuse, and killing, that happens in these places), there are many differences between these experiences, most of which I can not even fully see or understand as a white male.

Black activists are met with violence in Birmingham, AL 1963

There is also a substantive difference in how the civil disobedience is carried out.  The famous actions of MLK highlighted the injustice of segregationist laws by breaking those very same laws.  The idea was, if it’s illegal for people of color to sit at the same lunch counter as everyone else, we are going to clog the lunch counters and make them lose business or have us arrested so that the world sees how wrong this is.  In the case of ADAPT’s actions, the laws we are resisting are not as straightforward and not as easily broken.  Medicaid regulations aren’t the type of things you can directly flout en mass to raise public outcry at their injustice.  I can’t even imagine what this would even look like.  How might we break the unjust laws of the institutional bias that incarcerates our people in nursing homes in a way that would be public and raise the tension around this issue to the surface of public consciousness where it can be seen by everyone and not just those that are suffering and dominated?

I don’t think that because we can not directly break the unjust laws with our actions it means that our civil disobedience is somehow unjustified.  It seems that the balance of power between the powerful and the marginalized is as scewed as ever and non-violent, civil disobedience is a viable tactic.

First, and most obviously, it raises the issue to public consciousness.  The drama of sit ins and arrests makes people talk.  What are these people doing?  What issue is so important to them that they are willing to sacrifice their bodies in this way?  Even the most negative response of “that’s not the way democracy works” at least gets people to acknowledge the issue at hand, which is difficult for a marginalized group that is so often swept aside for “sexier” political issues.

This week, MI-ADAPT’s action didn’t get to the point of police and TV crews, but it functioned as a negotiation tactic.  No one explains how civil disobedience is PART of the negotiation process better than the man himself, MLK, in “Letter From a Birmingham Jail” after he was imprisoned during the Birmingham lunch counter sit ins, “You may well ask: ‘Why direct action? Why sit-ins, marches and so forth? Isn’t negotiation a better path?’  You are quite right in calling for negotiation. Indeed, this is the very purpose of direct action. Nonviolent direct action seeks to create such a crisis and foster such a tension that a community which has constantly refused to negotiate is forced to confront the issue.”  When there is such an imbalance of power that a marginalized group is not even allowed the common courtesy of serious consideration and negotiation, that is when non-violence must come in to play to put the negotiations back into balance.

This is exactly what happened at the Senator’s office last Tuesday.  Let me back up.  Over the past 2 years, MI-ADAPT had sent emails requesting co-sponsorship of the CCA that were responded to with form letters.  We had requested formal meetings to talk about our issue with the Senator and were told to wait and that they would “get back to us.” Once, some of our members showed up in the Senator’s DC office to see if she was there and might at least say a quick hello.  He caught her in the hall and was told she had already intended to sign on to the CCA and it must have been a staff oversight.  Clearly, this is a pattern of people with disabilities being swept aside and told to wait.  It was not an outright hostility, but it was a clear message that we are not a priority and our lives and liberty don’t matter as much as the issues she was dealing with.  This message came through loud and clear in Stabenow’s Lansing office this week.  Again, we were told they would pass along the message, but we would have to wait.  They could not guarantee support, they could not even guarantee a meeting about the substance of the issue.  That is, we were being told that THEY have the power and were not letting go of it.  THEY controlled if negotiations even would happen and were not about to give any ground.

ADAPTers getting arrested at national action in Nashville, TN 2006 (photo by Tom Olin)

It was only after we realized that we were not being negotiated with in a serious way because we were perceived as powerless that we moved to take back the power we needed in order to get the attention our brothers and sisters dieing in institutions deserve.  The chanting and blocking of the office exits was not a move at coercion, but a move to get their attention and become an urgent priority rather than a marginalized group that could be ignored.

This is the state of American politics.  It is built around a system in which big campaign contributors have access to the law makers and the rest of us are told to stand in line indefinitely.  When we do not have deep pockets, we need to find other ways of becoming a priority for our “public servants.”  Even those who are not directly hostile to our cause, like Debbie Stabenow who HAS supported de-institutionalization in the past, serve the whims of the already powerful.  The issues that have her attention — and the attention of every other legislator — are those that serve the interests of the wealthy and the connected.  To become a priority and to get her attention as a group deserving negotiation, we could not use our bank accounts, so, in the tradition of other marginalized groups, we used our bodies and our voices.

In Michigan, it snows in the winter. I knew this when I moved, but didn’t think it could be any worse than CT’s “Nor’easters”. This week, it dropped to negative teens at night (negative 20’s with windchill) and snowed at least a few centimeters every single day. This is all a round about way of saying that I did something kind of rare and took the time to watch a DVD today because I was snowed in at my girlfriend’s apartment. We watched Last King of Scotland, which is hardly a date movie with its very graphic violence. However, we aren’t exactly like many couples and so it fit our tastes.

It is the true story of Ugandan dictator Idi Amin’s brutal regime that caused the deaths of over 300,000 of his own people. One of the striking parts of the story was that these deaths were not a part of a systematic racial cleansing per se, but were the killings of the factions of his political opponents. Amin’s warped psychology justified this violence in the name of stability, because his was one of the first African governments that were completely independent of colonial rule. His was a message of black power, unity, independence, and pride. The unified stability he sought was a response to hundreds of years of racist colonial oppression and exploitation. These ends were not themselves horrifying and could, in fact, be seen as a very good consequence for the people of that nation. After all, independence from colonial power is the same end that our country’s founders were aiming for during the war that created our nation.

Of course, the scope and nature of the violence visited upon his people was outrageous and not at all justifiable by this end. As the movie portrays, many of the killings were the executions of unarmed civilians, not war casualties. Amin was no patriot but a brutal murderer who was drunk with his own power. His absolute commitment to an ends that was not altogether morally bankrupt brought him to the use of means that are among some of the most horrific in history.

Also, Amin is not alone in his brutalities. History is ripe with examples of governments bringing about unthinkable tragedy in these ways. We are often quick to point at the Nazis or the Communists, but even our own government used such logic as it stood alone as the only entity to ever unleash the devastation of a nuclear weapon. Perhaps we may even look to the contemporary torture of terrorism suspects at Gitmo as an example of justifying violence and ignoring basic human rights in the name of a seemingly beneficial ends.

Perhaps I should start using this pattern of thinking as an explanation when I find myself discussing Jerry Lewis and his many offenses. One of the stock responses I get is “i understand why YOU don’t want to be pitied, but he has raised a lot of money to conduct research that will cure people who don’t want to suffer with MD.” Of course, I could and probably should challenge the notion that a medical cure is more desirable than a social one. However, this may be a much harder line of reasoning for someone to follow who has been so deeply socialized to believe that pity is an appropriate and virtuous response to disability. Instead, it may be better to really latch on to the deeply bigoted statements Lewis has made, and point out that the ends of funding for research cannot possibly justify the harms he visits upon the crip community with his very public words and attitudes.

Now, this is not to say that Lewis can be justifiably compared to a murderer like Amin in every way.  Surely, the harm Lewis does can not compare in scope.  Arguably, bigoted attitudes like his lead to the incarceration, abuse, and untimely death of thousands of people with disabilities in nursing homes, institutions, and the like.  Yet, he cannot be held directly responsible as the primary cause of this outrage, because he is a washed up comic, not the head of a government.

However, the means-ends reasoning that people use to defend this hack is quite similar:  “But what does the money go toward?” . . . “Doesn’t the money he raises help children?” . . . etc. etc.   My question is, what ends are good enough that the disability community should be asked to tolerate this man when he says in an article he wrote for Parade magazine that wheelchair users “just have to learn to try to be good at being a half a person?”  What amount of money is worth awarding a humanitarian award to someone who says on national TV, immediately after the passage of the ADA making employment discrimination against crips illegal, that people with disabilities “cannot go into the workplace. There’s nothing they can do?”  He may not be a dictator, but millions of people watch Jerry and are “touched” by his words and cannot understand why we can’t look past his old fashioned views because he has done so much good.  These supposedly good ends cannot be justified by the means of promoting the most basic element of ableism that keeps us as second class citizens almost 2 decades after the passage of ADA, pity.  I couldn’t possibly come up with the words that link pity with our oppression and marginalization better than Jerry did himself in a TV interview in 2001: “Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

Not that he or anyone remotely close to him will read this obscure web-log post, but I wanted my first post since going into the “hibernation” of finals season to be in honor of the Honorable David Paterson, governor of New York.  Recently, SNL did a sketch with Paterson as its subject.  I was busy frantically writing a seminar paper last Saturday and missed the show’s live airing, but caught it on youtube more recently.  Admittedly, parts of the sketch are quite funny, particularly the parts where their portrayal of Paterson “craps on New Jersey.” 

However, the sketch was quite upsetting in their caricature of this articulate, politically savvy leader as a bumbling idiot, merely because he happens to be blind. Typically, SNL is funny in its mockery of politicians because it picks up on personality quirks and contextual absurdity to poke fun at them. For example, Will Ferrell’s famous southern drawl, silly smirk, and ill-imagined SAT words made “strategery” a favorite of my generation. More recently, Tina Fey’s spot on impersonation of Sarah Palin in several opening sketches, with her winking, apparent ignorance public policy, and outright annoying “folksy” demeanor surely had a much bigger influence on people’s political sensibilities than a short spot on Weekend Update, after the show is half over.

Governor David Paterson of New York

So, why would Palin and others keep silent, while Paterson risks the appearance of being an oversensitive, bitter blow hard? The answer is simple, this SNL was not about Governor David Paterson, it was about disability. The sketch does not pick up on any personality quirk of Paterson’s as an individual, but stereotypes him as a blind man. Holding charts upside down, wandering about in front of the camera, and generally appearing confused, these jokes were not about Paterson but about blindness. It is as egregious as if SNL decided to mock Barack Obama, not for being a media darling, as they did, but for being a black man, complete with those stereotypes. I am not trying to engage in the “oppression olympics” here, but mean to point out that this sketch spent a good deal of time mocking a stereotype of disability, not a particular political figure.

Paterson’s response was simply heroic. It is unquestionable that speaking out against the SNL sketch was against his political interest. The associated press reports that Lee Miringoff, an expert pollster that gauges public reaction to politicians, said that the reaction against the skit was “unwise” and explained “I can’t recall the last time a politician has reacted negatively to being lampooned on ‘Saturday Night Live,’ . . . It humanizes them. At least your name is on the marquee.” What this Miringoff doesn’t get is that Paterson was not trying to react in a way that would serve his political interests. What is “unwise” politically can be straight-up valiant when you look beyond the narrow political picture. For once, a politician was not thinking just of himself, but of his community.

Governor Paterson took a strong stance in support of the disability community, showing his moral medal as far as I am concerned:

“Now that [Alaska Gov. Sarah] Palin’s not around, they seem to have run out of material . . . The idea of a person rolling around the stage in a chair, being disoriented, can’t find anything, bumbling, in a sense looking like a clown is a way disabled people are portrayed all the time. . . . The perception that disability equals inability to be responsible is totally wrong . . . There is only one way that people could have an unemployment rate that’s six times the national average — it’s attitude . . . And I’m afraid that the kind of third-grade depiction of individuals and the way they look and the way they move add to that negative environment . . . I don’t mind that they make fun of me, but I thought it was important to speak up for those who don’t have a voice and don’t have a job.”

These, my friends, are the words of a true hero of Crip Town. He is not merely a politician who happens to have a disability. He is one of us.

Thank you David.

I don’t have a great deal of time to write this afternoon, but wanted to weigh in on Obama’s speech last night.  A lot of my friends were very pleased he mentioned disability as a difference that, while relevant and important, cannot stop us from uniting as one people.  He said, “It’s the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states. We are, and always will be, the United States of America.”  Of course, in a world where disability is so often swept under the rug as an issue that is not as “sexy” as the others — it’s sad when the tax code is perceived as more interesting — it was encouraging to hear our next president call out to us with his message of unity and hope.  Let’s look at it a bit more carefully.

Obama delivers his victory speech on on November 4, 2008 in Chicago before an estimated 200,000 people

First and foremost, disability was listed among a series of human traits that have historically been separated out and marginalized as the “Other.”  That is, Obama’s message of unity is closely bound up with a message of justice.  Unity cannot merely be a sweeping under the rug of oppressions and marginalizations.  We cannot IGNORE how folks are treated differently in the name of “unity.”  Sometimes, unity must be sacrificed in order to deal with injustice (like the civil war or the civil rights movement).  However, at the end of the day, true unity CAN be achieved if we address these differences head on and right the wrongs that have divided us.  For me, the reason Obama’s mention of my community brought up a swell of emotion has to do with this recognition of injustice and his call to achieve unity through its demolition.  Unity should not be achieved by excercizing top down power that ignores or suppresses difference and forces conformity, but through grassroots change that renders such differences as close to harmless as possible.

Closely tied to this recognition of a need for justice to achieve unity was an implicit call to action.  He was saying that these marginalized groups have the power to address their own oppression, take back what is rightly theirs as Americans (civil rights), and unify our nation as one people.  If the key to unity is to address injustice, we ourselves as marginalized, divided people must take action to do just this.  While John McCain enjoyed talking about HIS personal responsibility and HIS record of putting country first, Obama called upon an entire people to, themselves, take responsibility for our nation’s fate.  The difference here is key to why Obama was able to win in such a big way.  It is the key to his political genius.  John McCain talked about “the government” as if it was some hulking, mysterious force that acted upon our lives while Barack Obama called us to be involved in understanding and shaping how this force affected our country.  He called us to remember that the government is not some great evil, but rather a creation of the people, for the people, and by the people.

The rhetoric that surrounded disability was no exception.  McCain wanted to talk about how his government would help children “with special needs.”  Obama, on the other hand, called our entire community to his side, recognizing our collective voice and our power to ourselves create change.  As evidenced by his very informed, thoughtful disability policy platform and his recognition of us on his diversity “short list” last night, Obama did not set us apart as an other to be pitied, but asked for our help to change the social landscape of a nation.

At the end of the day, Barack Obama’s electoral college landslide was nothing short of the greatest COMMUNITY ORGANIZING effort ever to be conceived and executed.  YES WE CAN!!!!

My last post highlighted the idea that we, as human beings, belong to certain communities and play certain roles that limit or determine the possibilities of how we can respond to certain issues. That is, our social position and the relationships we have with others shapes how we think and act. However, I don’t want readers to think that I am some kind of moral relativist who believes that one way of thinking and acting is no better or worse than another. Philosophers may sometimes hold this view, but activists, surely, do not.

So, I’d invite you to watch the above youtube video that outlines McCain’s response to the Community Choice Act, which is perhaps the most important crip legislation to face the nation since the Americans with Disabilities Act. It calls into question Palin’s claims about her knowledge of and loyalty to disability politics by linking her to McCain’s hard line stance against this bill. I thought it was well made and summarizes a lot of what has happened with disability politics in recent history.

Also, look for my friend Amber being arrested at McCain’s office last spring (whose blog called this video to my attention at http://ambertracker.blogspot.com/) .

This term, I am taking a seminar that examines the key writing of German philosopher Martin Heidegger.  Like all of the German philosophy I have read so far, his style of writing is nearly incomprehensible.  Hopefully, I can boil one of his key ideas down into something that can help us understand the way disability was addressed during the most recent Presidential Debate, without being as unreadable as he is.

Heidegger’s idea that I think may be useful to us is “the They.”  The They is - in simplest terms - the unexamined set of boundaries that mark off the limits of what we can think and how we can act as social creatures.  Heidegger argues that, because we always exist in relation to other persons, the possibilities of our existence are constrained by those relationships.  If we all exist in relation to some community and never in true isolation (even if we are rejected by a particular community, our existence is still along side it and relating to it in various ways) then the different possibilities for how we live are limited by our relationship to this community.  Heidegger writes: “We take pleasure and enjoy ourselves as they take pleasure; we read, see, and judge about literature and art as they see and judge; likewise we shrink back from the ‘great mass’ as they shrink back; we find ‘shocking’ what they find shocking.”

At first, it is tempting to understand this They as a type of conformity or group think.  Maybe Heidegger is arguing that there is something about being human that makes us want to conform to the broader social opinion?  This doesn’t quite seem to get the notion quite right though because the They is not the social community itself or the standards we conform to.  Rather, it is our human way of existing as the type of creature that thinks and acts in relation to a social environment.

McCain and Obama at the 3rd Presidential Debate

While watching the most recent presidential debate, I think I may have stumbled upon an example of how the They works to limit how we act and react in a social environment. A question came up about the qualifications of the vice-presidential candidates, and John McCain took the opportunity to mention his running mate’s supposed expert knowledge about and passion for the benefit of “special needs families” because she has a newborn son with Down syndrome - the adorable and semi-famous Trig that acted as prelude to my last blog post. Specifically McCain grumbled in his mavericky way: “by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children. She understands that better than almost any American that I know. I’m proud of her.” Amidst Obama’s response to McCain’s general claims about Palin, Obama countered with “And I think it’s very commendable the work she’s done on behalf of special needs. I agree with that, John.”

This entire exchange from both candidates is fraught with what I would see as a false understanding of the reality of disability. It is tempting to believe that they have merely conformed to a bad way of thinking about and acting toward our crip community.  One such false understanding is that the implicit, unquestioned premise of both candidates’ description of disability is that it is a biological harm that needs to be cured with medicine rather than a social harm that should be mitigated through the restructuring of society. Another, related premise is that the needs of people with disabilities are somehow “special” or different than those of your average human being – access to transportation and housing and education and the basic necessities of life. Another premise that may not come through as clearly to the reader of the text rather than a viewer of the televised debate was the notion that people, especially children, with disabilities are deserving of our pity. The candidates screwed up their faces into soft frowns to show how much the situation of these poor souls troubled them, and Obama quickly agreed that Palin had done “good work” in this area, the possibility of questioning her credentials in disability policy never crossing his mind – despite that fact that she has no leadership experience within the disability rights movement and no demonstrated knowledge of the major contemporary policy issues facing this generation of Americans with disabilities (see my last post).

I would argue that this is a clear example of the They constraining the possibilities of how these candidates exist in relation to disability. To mimic Heidegger’s style: we think, act, and emote toward disability as they think, act, and emote toward disability. Not even considering their status as candidates for the most powerful job in the world, the McCain and Obama sitting on that stage as average Americans moving through this social world did not even have the possibility of relating to disability in a more appropriate way because of the relationship of the They that had controlled them. If my story stopped here, it would seem as if I, as a person with a disability who has experience with the disability activism, culture, and theory, had managed to find a new way of thinking and acting that authentically defined my own possibilities in this area. I had a grasp on the proper way of thinking, acting, and emoting about disability because I came from a purer, advantaged viewpoint. I may have had these thoughts cross my mind for a moment before my phone began to buzz with text messages from friends who were reacting to the ableist rhetoric of the candidates in the exact same way.  That is, they were upset that the candidates were heaping pitty upon these faceless, nameless “special needs children” with the same words and mannerisms that the average American uses when they encounter us and react.  Surely, this was the They at work, defining how these candidates could think, act, and feel about disability.  Of course, a careful observer would realize that, as my friends and I echod each others’ outrage in a predictable way, we had our own They that was setting the boundaries of how we confront these situations. My possibilities were still constrained by the They and I was shrinking back from the ‘great mass’ as they were shrinking back.

So my question is: how do we know when what moves us is not this invisible tyrant of the They, but a genuine personal thought, action, or emotion.  As crip activists, how do we get beyond preaching to the choir and begin to clear new ground?

After tonight’s debate, I am brewing a post about the rhetoric of pity that has framed the public discussion of disability this presidential cycle.  It seemed to really come to a head tonight (and was deployed by BOTH candidates).  I need to get my paws on a transcript of the debate so I can accurately critique what was said.  It seems to me that poor Trig Palin’s mom has tokenized him from birth, but more on that later.

Until then (hopefully I’ll have time this weekend), I thought I’d share an email my sister forwarded to me that was written by a special education attorney in my home state of Connecticut.  I found it to be a thoughtful and illuminating analysis of Palin’s repeated claim to expertise about “special needs kids” because she happens to be the mother of an infant with Down Syndrome.  I think it does a good job of getting at some of the core issues at stake in this election, rather than getting hung up on the hollow sound bytes.

Trig Palin, the most famous (and most exploited) crip kid since Ashley X!

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Dear clients, friends, colleagues, and all of the above,

As we near the Presidential election in just three weeks, I have been asked by many of you to comment on my thoughts on Gov. Palin and what she can and will do for special education students. As an attorney whose practice focuses exclusively on the representation of children with disabilities, I always investigate candidates’ positions and records on this very critical moral and financial issue. One of my clients recently suggested that I share with others what I have learned, and so here it is.

When Gov. Palin first came to my attention, I was, as I am sure all of you who care about this issue, intrigued to have someone on the national platform who talks about children with special needs. Since hearing her say this repeatedly in speeches, I have been waiting, and waiting, to hear some specifics on special education reform. Most of all, I want to know what her stance is on the IDEA, the federal statute that governs special education. The IDEA is up for reauthorization by Congress in 2010, and it is crucial that it reflect the policies and funding structure necessary to protect and appropriately educate our children with disabilities. I needed to know what Gov. Palin thinks about the future of special education legislation in this country.

I know where the other three on the tickets stand; Senators Obama and Biden have issued position statements on the IDEA to various parent groups, strongly supporting full funding for the IDEA and the rights of children with disabilities and their parents. The Obama-Biden website has a direct link to the ticket’s position on disabilities. Senator McCain’s website does not have such a link and neither he nor Palin have provided those positions on the IDEA to parent advocacy groups. Senator McCain does have a supportive position on the ADA (Americans with Disabilities Act) which has been published. I was, however, extremely disappointed in his discussion on the Senate floor regarding the Reauthorization of the IDEA 2004, in which he expressed his concerns that parents of children with disabilities who have to sue to secure appropriate services for their children under the Statute and win against districts shouldn’t have their attorneys’ fees covered. This is not just a matter of self-interest for me;=2 0it is the difference between families, especially poor families, being able to vindicate their civil rights or not. But I knew those things, I did not know where Palin stood, and I wanted to find out.

Having waited for some specifics from her on just how she is going to be an advocate for children with special needs in the White House, I finally got close. In her recent interview with Greta Van Susteren on Fox News, she was asked what her position is. While never mentioning the IDEA at all or what needs to be changed, kept, or fixed in it, she stated that the issue that needs to be addressed is “equal access” for children with special needs.

EQUAL ACCESS? Seriously? We HAVE equal access, that is what the original version of the Statute fought for in the early 70s, when children with disabilities were literally prohibited from attending our public schools. Equal access is so far in the minority of what needs to be addressed in special education I hardly know where to begin. Our problems are not that children with disabilities aren’t allowed into the buildings; our problem is what happens when they get there! What about a Free and Appropriate Public Education? What about “meaningful educational benefit?” What about giving children with special needs the tools to thrive and prosper and be fully independent adults, which is what the IDEA now stands for? We are decades fro m equal access being the key question, and apparently Gov. Palin is not aware of that fact.

Now, you might say “well, Jen, I am a parent of a child with special needs and I didn’t know that either.” Okay, my response: “are you running for Vice President of the United States? Are you telling the nation that you would see yourself as the voice for those children within the federal government? If you were, do you think you might have looked into it a little bit?”

It is not terribly surprising to me that Gov. Palin’s views on this are so far outdated. I have traveled to Alaska to give a speech to parents and professionals on the subject of the rights of children with special needs, in particular children with autism spectrum disorders. I was stunned by how far behind the State was from the vast majority of the rest of the country on the education of children with disabilities. Perhaps, for Alaskans, “equal access” IS the problem, but it is certainly not the case in Connecticut or most of the rest of the country. I am in regular contact with a colleague of mine who is a Parents’ attorney in Alaska, who has had to fight tooth and nail for children with special needs in Alaska simply to secure them the most basic of services that we take for granted here. I for one do not want the rest of the country to use Alaska’s system of educating our most vulnerable children as20a paradigm.

Okay, yes, you all know I’m a liberal…but that’s one of the reasons that I chose to get into the field of representing children with special needs, because I believe in my heart that this last bastion of civil rights is absolutely critical to fight. We need major fixes in our special education system, and if you think that who is in the White House does not effect you on this issue, you couldn’t be more wrong. IT MATTERS. It matters in terms of funding and at least as, if not more, importantly, enforcement. Our IDEA enforcement, even in States like CT where we have zealous advocacy, is woefully inadequate. School districts routinely violate the procedural and substantive rights of children and parents and only in a small fraction of cases are they taken to task for it. It also matters because the next President will have at least a few Supreme Court appointments to make. We have had more decisions from the United States Supreme Court in the area of special education law in the last few years than we had for decades. Those decisions have tremendous impact on whether parents have the right to have proper evaluations done for their children, how and when parents can exercise their rights under the IDEA, who has the burden of proof in Due Process Hearings, and a myriad of other issues which directly impact our children with special needs.

Whether we properly educate and embrace our children w ith disabilities is crucial to the future of this country, as the cost of NOT doing so will be far larger than the cost of doing so…leaving out the fact that it happens to also be the right thing to do in a great society. This issue should be front and center for any candidate for the White House, and I write to let you know that, at least as far as Gov. Palin is concerned, it has been an opportunity not only missed, but frighteningly misunderstood. It does not bode well for her, for us, or most importantly, for the children we love who need and deserve better in an “advocate in the White House.”

I will be casting my vote on November 4th for Obama-Biden, and I hope you will join me. They and their party have been on the side of children with special needs historically, and they will be on their side in the future. As our economy implodes and State and local educational budgets tighten, if we do not turn this around now, I fear that we will, once again, be fighting only for “equal access” for our kids. That is unacceptable to me.

Finally, for any of our more conservative clients who I may have offended, my apologies; I respect your views even if I disagree with them. However, to calm your concerns, Attorney Dana Jonson and I have convened a Personnel Board consisting of the two of us, which has investigated the matter and determined that you continue to have excellent legal representation.0

Thanks for reading, please feel free to forward this email to any and all people you know who care about the future of special education in this country.

Best, Jennifer Laviano
The Law Offices of Jennifer Laviano, LLC
Sherman, CT

Yesterday, NY congressman Chuck Rangel referred to Sarah Palin as “disabled” during a news interview. His point was to highlight Palin’s gross inexperience and inadequacey when it comes to foreign policy. Later, he tried to backpedal and claimed that he meant to say Palin was “disadvantaged” and “is an obviously healthy person who in no way fits the description of disabled.”

I agree with Rangel that Palin isn’t qualified to be vice president and has been tokenized by the Republican party in a not-so-subtle attempt to appeal to the white, suburban, female demographic. What I have a hard time with is the notion that someone who DOES “fit the description of disabled” is somehow unworthy of our respect and lacking authority. Rangel’s comment — and pathetic attempt at retraction — was deeply ableist in that it hinged on the premise that people with disabilities deserve our pity and charity, but not our respect and obedience. We must be “kind” to someone who is disabled, but we should not take them seriously if they are in a position of authority. I would challenge Rangel to share what exactly he means by “the description of disabled.”

I have returned now to the “real world” and am coming down off of the natural high of the ADAPT action. The adrenaline of that 5 days was pretty extraordinary. I heard several stories explaining why and how the arrests went down at Dodd’s office — and several other offices of members of congress, apparently. Rather than relate them here, with the inaccuracies of sleep deprived memory, let me point you to ADAPT’s press releases: http://duhcity.org/duhpress.html. They are all informative, but the first on the list — http://duhcity.org/press/duh004.html — is the most relevant to the action that happened on Tuesday on Capitol Hill.

One thing of note that you won’t find on the press release pages is a description of how I spent my Tuesday night.

DUH City was erected as a political statement of solidarity with folks with disabilities who are, in essence, homeless because of the lack of availability of affordable, accessible, integrated housing. Many folks with disabilities are either homeless in the traditional sense of lacking shelter or homeless in the sense that they do not have a home, but are warehoused in institutions and nursing homes. While such arrangements meet the minimal requirements of permanent shelter from the elements, it is argued that they are not homes because the people living their do not have the security and freedom that is essential to calling something a home. That is, a home is not a place where every moment of your day is controlled by someone else’s regimental routine. So it is that ADAPT tried to call attention to these unacknowledged homeless by living as close to homeless as we could for a few days on the front patio of the US Department of Housing and Urban Development.

ADAPT button with our standard slogan!

In a personal statement of solidarity with people with disabilities who are homeless, I chose to tweak this idea slightly and sleep in a cardboard box on Tuesday night, at the fringes of DUH City. This was intended to be both a political statement, contributing to the overall message of DUH City and an attempt at an exercise in empathy. Since doing this, I have decided these are separable ideas and that I may have succeeded in the one and failed in the other.

As a statement of political solidarity, it probably went mostly unnoticed, but was genuine. However, I don’t think it really worked as a way of building any kind of real personal empathy for those who face this kind of situation as a crisis. As my friend Dominic pointed out in a comment on my post “That could have been me…,” it may be impossible for genuine empathy to be developed between folks who are embedded in systems of drastically disparate power relations. His basic idea was that true empathy — rather than pity — could not exist between able bodied people and folks with a disability because the power differential is too permanent and too absolute for anyone to be capable of truly thinking outside of it.

I am starting to understand Dom’s point here. Like disability, class is a system of power relations. While I can sleep in a cardboard box for a few hours, this will not be a genuine understanding of an impoverished person with a disability’s experience of the world. Firstly, I had a CHOICE of where to sleep. This in itself means that I can not understand the most important aspect of the oppression of poverty and homelessness, power relations. I cannot get outside the fact that I could have gone back to my 200 a night hotel room at any time. How can I understand homeless on anything but the most superficial of levels while retaining this position in society’s power structure? In addition, I had the luxury of a sleeping bag and plenty to eat and plenty of hope for my future. This cannot be a genuine exercise in empathy.