PhilosopherCrip

This semester, I’m taking a philosophy course on international development ethics and a major theme in this literature is the controversy over what we owe to whom and why.  Some would argue that, morally, we have a stronger responsibility to prevent or ease the suffering of those we have some kind of relationship with.  It is probably too easy to reduce this sort of perspective to an argument favoring a sort of parochialism or nationalism.  The “charity starts at home” camp can use this kind of thinking to ignore the sufferings of others who speak a different language, practice a different religion, or have a different skin color.  However, this sort of reduction is too easy.  Surely, even the most radical progressive would agree we DO owe our own family members more than we would a stranger.  I know that I am all for challenging power structures and redistributing wealth in the US and globally, and am willing to work for radical changes toward these ends.  However, at the end of the day, I’m not about to offer floor space and an air mattress to a random homeless person in Lansing, but if a close friend or family member needs this kind of thing they know my door is always open.  I have helped friends in this way and would gladly do it again.  I think most people feel this way.  Some folks put more weight on relationships than others do when it comes to our moral obligations to help and there are differences regarding which relationships are emphasized, but I think we all share an intuition that relationships matter in a very deep way.

Sometimes, the identities we have seem to entail certain relationships, and with those relationships come moral responsibilities.  For me, when disaster recently hit Haiti, one of my first reactions was to want to reach out to the disability community there, knowing that most times people with disabilities are especially vulnerable in natural disaster situations (just by virtue of the fact that people with disabilities are vulnerable in general because of poverty and lack of political power).  Of course, with a disaster like this comes new disabilities, as well, and my first thoughts were toward those folks especially.

I became aware of Portlight Strategies, a non-profit disaster relief organization that organizes relief efforts on the web and specifically targets facilities that are helping people with disabilities.   Soon, a friend brought to my attention an organization that was partnered with others and offered a comprehensive list of disability aware relief efforts, Mobility International USA.  I donated a (very small) sum, posted these links to my facebook profile, and continued to go about my business of living.

Of course, this was not nearly enough, but it was what I thought I could do at this point in my life as a grad student with very limited time and income.  Ironically, this gets me back to my original point of relationships at least somewhat determining our responsibilities.  To be sure, if my family was in Haiti, I would have had a very different response.  I recognize this has a lot to do with my own privilege.  As a white, middle class American, I could make myself feel warm and fuzzy and then carry on my daily life without thinking much more about the horror being experienced “over there.”  Even the suffering of my disabled brothers and sisters is distant enough that I can set it aside to read for class or talk on the phone or see a movie or play a game of scrabble or have a beer.

As I continued to go about my business of living, my living often comes back to reflecting on events in my life and the world in general and this was no exception.  The question I am reflecting on is “what about the disability identity binds me to the crips in Haiti and makes me feel more responsible to them than I would others?”  When we start to unpack this question, it’s not as straightforward as we might think.

A Map of Haiti

It may be factually true that people with disabilities are more vulnerable than others in times of disaster and often do not receive relief services because of inaccessibility or outright bigotry.  Yet, that wouldn’t itself explain my reaction.  Surely, the same is true for other kinds of oppressed groups (gender and class especially), but my heart and mind did not immediately go to those marginalized populations and neither did my energy or resources.

Something must have moved me to want to reach out to people with disabilities in particular.  I think this is because I identify so strongly as being part of a larger disability community.  That is, like a family, I felt that I was part of a group that included disabled people in Haiti.  That is, I had some sort of relationship with them that made me more responsible for their well being than I would be toward your average Haitian, at least to some degree.  This idea didn’t really get me very far.  I found myself trying to understand what this compelling relationship was and whether it was something that actually should compel me.

Surely, the bio-medical facts of disability do not, by themselves, create a community.  The only folks I’d personally have  much in common with bio-medically would be Haitians with dwarfism that use a wheelchair.  Feeling some kind of obligation toward them based on mere biological similarity would be absurd.  It would be like feeling community with other people who have brown eyes or a slightly cleft chin.

Rather, the sense of community I felt toward Haitians with disabilities must have something to do with how disability mediates one’s experience.  The sense of community I had with the disabled of Haiti had something to do with a common experience that was shaped by our disability.  But what is this common experience?  Surely, it isn’t anything to do with a particular diagnosis.  I don’t have the same phenomenal experiences as someone with an amputated limb or a spinal chord injury or a brain injury.  That is, I have never felt phantom pain or lost bowel/bladder control or was off balance.  Instead, my disability identity that leads to this sense of community through common experience has something to do with having experienced ableism.  This leads to 2 further questions, both of which are too big to really be explored in a blog.  The best I can do is state them in a way that will get people thinking along these lines.

1) Is the primary experience of disability a negative one of oppression and if so, what does this mean for our community?  By analogy, racism has something to do with the identity politics of race, but surely rich, vital cultures are at the center of the African American or Latino communities.  Likewise, sexism has something to do with being female, but surely there are uniquely female experiences that are positive ones.  Is the harm of ableism the only thing that binds together the disability community and makes my experience something like that of a Haitian disabled man’s?  What does it mean for a community to define their identity purely in negative terms in this way?  Are there other alternatives?

2)  How “common” is the experience of disability REALLY?  As a white, physically disabled, highly educated, middle class straight man, does the ableism I grapple with in my everyday experience look anything like what a poor Haitian is experiencing during this crisis?  What characterizes this ableism that “we” experience and whose experience gets to be the defining one?  Can I speak to anyone else’s experience in this regard?  Would the tools I use to understand and struggle with ableism like the social model of disability or “independent living philosophy” even make sense to someone in the context of post-earthquake Haiti?  Do I have a right to even think that my experience is like theirs in some way, being that ableism is a culturally defined oppression and I am utterly ignorant of their culture?

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.

It’s rare that I re-post other people’s writing on my blog. This is mostly because I see this blog as a way to “test out” ideas that I have been playing with but don’t really have another home to inhabit. However, a friend, fellow little person, and philosopher in his own right, Bill Bradford, recently wrote an op-ed for his university newspaper that was both emotionally moving and rigorously argued. This is a rare combination, so I am sharing it with others. Here is a link and a taste:
Column: Failed health care policies become death sentence

“George W. Bush killed my brother. Okay, admittedly that was a stretch. A more likely culprit is a combination of the failed policies of the Republican Party, the spinelessness of the Democratic Party and some bad choices my brother was forced to make in his life…”

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.

To supplement my last post encouraging readers to track the adventures of MI-ADAPT via twitter.com, I thought I’d add a few words about what ADAPT is exactly.  I lifted the various pieces this description off of the national org’s website, but feel it accurately describes the MI chapter as well.

The Main Issue at Hand: For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc.  Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly wan t their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It’s time for Real Choice.  The Community Choice Act provides an alternative and will fundamentally change our long term care system and the institutional bias that now exists. Building on the Money Follows the Person concept, the two million Americans currently residing in nursing homes and other institutions would have a choice.

History: ADAPT has a long history of organizing in the disability community and using civil disobedience and similar non-violent direct action tactics to achieve its goals. In 1983, as a project of the Atlantis Community in Denver, ADAPT began its national campaign for lifts on buses and access to public transit for people with disabilities. ADAPT started as American Disabled for Accessible Public Transit. For seven years ADAPT blocked buses in cities across the US to demonstrate the need for access to public transit. Many went to jail for the right to ride. In the early 1990s the County and City of Denver and Denver RTD placed a plaque at the intersection on Colfax where the Atlantis Community held the first inaccessible bus and this was one of the first historic markers in the struggle for disability rights. Wade Blank, a founder of Atlantis and ADAPT, used to take all visitors to see it, and always brought a bottle of Fantastic to clean it up. ADAPT played a major role in gaining passage of the Americans with Disabilities Act, ADA, particularly in ADA’s stringent requirements relating to accessible transit, and its being seen as a civil rights law. Passage of this bill has meant victory for ADAPT in our struggle for lifts on buses. Once the transit issue was won and access was begun to be guaranteed, ADAPT felt it was clear attendant services must be our next issue. In a national planning meeting July 1990, ADAPT targeted the reallocation of one quarter of the federal and state Medicaid dollars from institutional programs to consumer controlled community based programs. ADAPT now also stands for American Disabled For Attendant Programs Today. Since then, ADAPT has decided our name will no longer be an acronym (it’s hard to fit all the issues into those letters) so we are simply ADAPT, but we are still fighting for community services and supports for people with disabilities of all ages.

It seems only appropriate that I am incredibly ambivalent about Peter Singer’s recent obituary for Harriet McBryde Johnson in the New York Times.  After all, her writing reveals that she herself was ambivalent toward the man, who lays out philosophical arguments for why parents should have the option to kill infants with certain kinds of disabilities.  Many in the disability rights movement are outraged that he was asked to write the piece because he has openly acknowledged that her parents should have had the right to kill her as an infant, if they so chose.  It does seem counter-intuitive to ask a person who publicly puts forth some of the most deeply abelist views possible to tell the story of a vitally important leader in the disability community.  However, if we take Harriet’s description of her own life’s work seriously, we see that she has come to terms with Singer as a human being and not a monster, so why should we close ourselves off from her understanding of the man and continue to demonize him?

In her book chapter about her arguments with Singer - Unspeakable Conversations, her journey toward seeing him as a human and not a monster is a central theme.  Surely, his philosophical views are not something we should stop resisting in every way we can at every opportunity, but can we afford to ignore the lessons she has to teach crip activists about focusing our outrage on systems of oppression and ideologies rather than individual people?  That is a central point of her reflections on her relationship with Singer.

RIP Harriet

She hesitates to even shake his hand upon their first meeting, but after genuinely trying to understand his ideas and how they were developed Harriet concludes: “If I define Singer’s kind of disability prejudice as an ultimate evil, and him as a monster, then I must so define all who believe disabled lives are inherently likely to be less happy, or that a life without a certain kind of consciousness lacks value.  That would make monsters of many of the people with whom I move on the sidewalks, do business, break bread, swap stories, and share the grunt work of politics.  The definition would reach some of my family and most of my nondisabled friends, people who show me enormous kindness and who somehow, sometimes manage to love me through their ignorance.  I can’t live with a definition of ultimate evil that encompasses all of them.  I can’t refuse the monster-majority basic courtesy, respect, and human sympathy.  It’s not in my heart to deny every single one of them, categorically, my affection and love” (227-8).

Key lesson: don’t demonize people for being honest about opinions that most people hold silently.  This is simply a way of scapegoating.  I do think that Harriet is completely right in this regard.  Singer and other bioethicists have become the whipping boys of many within the disability movement.  Surely, his biases are tremendously harmful to us and his arguments must be refuted.  However, these arguments are grounded in the same biases that we encounter every day of lives, even with those we hold closest to us.  Demonizing Singer does not help our cause, but makes us look irrational.

So, if Harriet is right and we cannot reject Singer as “categorically evil,” does this mean that we should uncritically accept him as a spokesman for telling the final chapter of her story in the New York Times?  One objection that I think needs to be raised is the notion that she should be defined only in contrast to him.  That is, Harriet’s life and work were important in their own right and should be remembered as such.  It seems wrong to characterize this leader within our community as only an opponent of Singer’s positions who happened to once allow herself to be tokenized and invited to Princeton (note: Harriet herself describes this experience as a tokenization).  It seems to me, her work to resist the telethon, at the very least, deserves equal air time when publicly summarizing her life. The offense is not THAT Peter Singer wrote the article, but that it did not do her justice as a force unto herself.

So, my objection to Singer’s obituary is not offense at him being some kind of monster.  This would be counter-productive to our cause in that he and others clearly responded better to Harriet’s measured argument than Not Dead Yet style civil disobedience.  This is true for philosophers as a general rule, I’d say.  If we are to silence dangerous opinions, we must do it with arguments of our own that show the opinion holders and the public at large why we are right.  Sometimes, when we are silenced we must use our collective action to get the attention of powers that be with tactics like civil disobedience.  But, once we are taken seriously by our opponents in the public sphere, it is time to move past the chanting and the arrests and address our opponents how we wish to be addressed, as fellow human beings.

I often use the word “crip” to refer to disability on this site and with those I am comfortable with, who I think can handle it.  I don’t often use it in professional settings, but even then it occasionally slips out.  Many times, I find myself having to explain how and why I am using the word.  Both temporarily non-disabled folks and people with disabilities express curiosity, amusement, horror, or some combination of these emotions in varying ratios.  I then attempt to educate and sooth them with an explanation about reclaiming language and how many marginalized groups have done and continue to do this with words that have traditionally marked them as “less than.”

When I use the term with other crip activists, I operate on the assumption that we are using the term in the same way with the same meaning.  Over this winter break, I have finally gotten around to finishing the very compelling autobiography of Harriet McBryde Johnson (started it last Spring), who also uses it as a word of choice when referring to people with disabilities.  It was this reading that made me question whether this term is used with a consistent meaning in the disability movement.

While describing her trip to Cuba, Harriet writes about the structure of their disability movement and the different organizations that have formalized it “One is comprised of people who are deaf and hard of hearing, one is of blind and visually impaired people, and the third, ACLIFIM, Asociacion Cubano de Limitados Fisico-motores, is made up of people with “physical-motor” disabilities, what we call crips” (156).  This definition of the word crip shocked me and seriously undercut the assumption that everyone in the disability world used the word in the same way.  Here I was two-thirds of the way through a book that I think has become an instant classic of crip culture, realizing that this luminary was using the term in a very different way.  What was even more disturbing is that I think Harriet, who has taught me a great deal with her writing, is using the term in a way that is not quite right somehow.  I’m not sure if I can argue that my use of crip is objectively and absolutely correct, but I do want to say that it has some important advantages.

My new vanity plate! Crip Power Baby!

First, let’s make the distinction.  The difference in usage is subtle, but it seems like Harriet wants to attach the term to a particular biological category, whereas my use is broader and more grounded in a social or political identity.  I have had discussions with many friends in the disability community that run the gambit of diagnosis and our usage does not distinguish between biological types of disabilities.  I have friends who are Deaf that identify as crips and use the word to describe themselves as part of a community and a social movement.  Unlike Harriet’s usage, you do not have to have a mobility disability to qualify, but rather a particular worldview.  To me, crips are people that have disabilities and that recognize the stigma and marginalization they experience in their daily lives for what it is, and choose to defy it.  So, more people can fall under the category than just those described by Johnson.  I think this is a better way of defining the term because it allows for a greater solidarity across disability types.  It focuses on the common experience of marginalization and common interest of liberation, rather than differences that have segregated us in the medical-human services complex.

Further, my usage of the word may be broader in its biology, but it is more narrow in its politics.  In her chapter about her MDA telethon protests, Harriet refers to a man that acts as her foil on a televised talk-show about the telethon as an “establishment crip.”  Clearly, this is a jab at his authenticity as a real member of the crip community, and so there must be something political about the term for her too.  However, the fact that she can identify him as a crip of any variety tells me that, for her, the term is more about biology than ideology.  I don’t think a person deserves to weild the title until they have seriously considered disability as a social system of oppression and begun to work toward the good of the crip community, as such.  It would be a stretch for an MDA Telethon defender to qualify.  Again, I prefer this usage because it emphasizes our community as it defines itself in its defiance of oppression, rather than is defined by the medical establishment, which is the lynchpin of the system of that oppression.

This is not to deny that crippiness in particular and disability identity in general is bound up closely with biological difference.  I don’t think that my use of the word crip could apply to a person that didn’t have some kind of physical, sensory, cognitive, or emotional difference of some kind, even if it wasn’t formally diagnosed by a physician.  I guess my point is just that our use of the term should move away from the biology as much as possible so that we can truly reclaim it on our own terms.

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!!!!

I’m not sure if the government “officially” designated October as Disability History Month, but it is widely celebrated as such in the disability activist community.  In some states (like NC and soon to be MI if all goes well), the public schools even teach a disability history curriculum during the month of October by mandate of state legislation.

If you have time, this is a good time to pick up a book about the history of the disability rights movement.  The industry standard is No Pity by Joseph Shapiro.  A more focused, but still fascinating and important book is activist and attorney Harriet McBride Johnson’s biography Too Late to Die Young. I was very lucky to be able to see Harriet speak and have her sign my copy a few years ago and am sad that I will not get to see her speak again now that I have read her book — she passed over the summer.

I can’t figure out how to embed a google video right into my page like I can youtube, but here is a link to a VERY well made short film about some major figures in the history of disability activism.  It summarizes the stories of Ed Roberts (visionary founder of the Independent Living movement), Wade Blank (original organizer of ADAPT, which uses grassroots non-violent direct action activism), and Justin Dart (my favorite Republican - except my dad - who is responsible for educating the entire country, from the grassroots to the president, about his vision for the inclusion of crips in mainstream society, which eventually became the ADA).  These are the heros of “crip town” and some of the patriots we should aspire to emulate.