PhilosopherCrip

This weekend, I’ll be going to Atlanta with the grassroots, non-violent, direct action group ADAPT to work toward ending the institutional bias in the United States long term care system.  “Institutional bias” is a term developed by disability activists to describe the unchallenged, irrational preference given by the federal government for funding the care of people with disabilities of all ages in institutions like nursing homes rather in the community with their families.

I will be blogging live from the action every day, so check philosophercrip.com often for my personal stories and reflections.  This will be part of a larger blogswarm effort being organized by my friend Nick Dupree over at http://www.nickscrusade.org.  For a preview of why we are headed to Georgia specifically, read http://www.adapt.org/atlanta2009.php.  Finally, for real time updates about the action as it unfolds, check out MIADAPT and NationalADAPT on Twitter.

Let’s FREE OUR PEOPLE NOW!!!!

Orange is the color of Community Choice!

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.

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.

the familiar, yet always inspiring ADAPT logo!

Of course, for strategic reasons I can’t give too many details, but MI ADAPT is planning a significant non-violent direct action for early this week.  I thought others, both across MI and in other states, who cannot be with us physically, may be interested in sharing the energy and collective power that is ADAPT.

So, to get us at least part of the way there, I set up a Twitter.com account for MI ADAPT.  Twitter is an internet service that allows groups of people to communicate via status updates made by cell phone text message.  I plan to be twitting a full account of the MI ADAPT action, updating our “status” as events unfold.

To follow along, simply set up an account at http://twitter.com/ and then begin following http://twitter.com/MIADAPT.  You can follow from your PC or you can set up a modile device (cell phone, blackberry, etc) to receive twits.

To be sure, a full account will be sent out to the ADAPT listserves afterwards and I am sure I will offer personal reflection on the day’s events on this blog, but Twitter will allow for real time updates and, hopefully, a stronger feeling of solidarity.  Also, we may call on your help through twitter messages.

FREE OUR PEOPLE NOW!!!

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.

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/) .

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.

This post will not be about my day today. I spent almost all of it sleeping. However, I can update folks about some stuff that went down yesterday and last night and today, while I was sleeping.

I don’t think I mentioned how, yesterday, some HUD officials came uot and asked for a meeting with ADAPT leadership, probably because we were making such a ruckus. Word is that HUD told leadership that they could not comply with our list of demands for the following reasons:

1. They believe in incremental change rather than large scale reform (this is the excuse given to every activist in the history of the activism and is really code for “f off things are staying as they are”).

2. They are trying to deal with the hurricane right now (also a bogus reason, our demands were for systems change that can be implemented after hurricane season, all we wanted was a promise for action.)

3. We have a lame duck president (this may be a bit more plausible, but there are still a few months lefts in the administration and at least some of our demands could have been met in that time.)

At the end of the meeting, the HUD officials told our leadership “see you next year.” I’m sure they find it funny that uor people suffer while they sit on their hands and we return each year with our demands, trying to chip away at their opwer structure. I wish we all had time to stay in tent city indefinitely. At least they got some more today. Friends that were at the meeting tell me that the HUD building has thin walls and they heard our chants clear as day. For a time, we will be heard.

Yesterday, there were also 8 or 9 arrests at McCain’s office. 2 ADAPT teams (of 5 I believe) broke off and paid his campaign headquarters a visit. 8 or 9 chair users got through the door before they could lock it and were able to shut down an entire day of fund raising calls with chants. Then police moved in. I am always troubled by how rough the police are with ADAPTers that don’t appear disabled. “TABs” (temporarily able bodied), “uprights,” or “walkies” always get hit the hardest when the police come and it is hard for us to watch or hear about. One friend had his shorts torn up from being dragged.

The word is, there are more arrests today at Sen Dodd’s office. Senator Dodd is a co-sopnsor of Community Choice Act, so I find it strange that he would be an ADAPT target and that they would resopnd with police force. Apparently the arrests were not as violent as at McCain’s office, btu I still fiond it strange that the liberal senator from my home state of Connecticut would be an ADAPT enemy. I trust leadership because I know they use direct action only after many attempts at traditional negotiation, but am I am anxious to hear the story of how this all happened.

DUH City was calm last night. The police were present at our perimeter but everyone stayed cool and they let us spend the evening chatting and joking. It was actualyl quite a beautiful experience, if not exactly what I expected. We ADAPTers enjoyed each other’s company in our home made crip ghetto, talking about politics and love and life. We slept under the stars and were happy. I hope tonight will be the same, but am ready to defend our DUH City with non violent direct action if iot comes to it. This has all been a pretty profound experience.

First, let me apologize for any grammatical/spelling mistakes of these “on site” posts. I don’t have much down time for rest and so I need to squeeze some writing in as I go along. There certainly isn’t time for editing, if I want to have the opportunity to sleep at all.

Today started early. That is, we wanted to surprise our target (National Headquarters of HUD) an so we got there before any of the staff or administration. I went to bed at around 10:30pm Sunday night, and was up at 2:15am Monday morning, so the march from the hotel could begin at 4am sharp! Many of my friends and family who mock me for not being an early riser will find that amusing. We arrived at HUD and began to erect tents on their patio, labeling it DUHCity (get it, HUD and DUH?). Security guards scrambled around, and there is even a rumor that we woke one up with our 4am chanting, but we weren’t there to “take” HUD. We were merely using it as a staging ground for other actions throughout the city.

At around 6am, my friend Amber, in charge of media relations asked me to help make calls to newspaper/radio/tv stations and invite them to our tent speckled DUH City. I was a telemarketer throughout my high school and college summer vacations and so I was ready and willing to deploy these skills under a streetlamp in the service of ADAPT. Surprised that so many news types don’t come in until 9am or so, I ended up leaving quite a few messages on voice mail. We hadn’t seen any major news outlets poking around at the time that I left DUH City about an hour ago, but we are in it for the long hall and so it’s possible they will show up, enticed by my salesmanship.

Talking about the long hall, it should be noted that DUHCity is a 24 hour operation. It should also be noted that I have been assigned to the overnight group responsible for making sure that it stays in tact until the daylight returns. I am naturally a pretty nocturnal person, so this won’t be too bad. I am about to take a 5 or so hour nap and I will buy some of my famous sugar free red bull being heading back out this evening. I need to be ready for an eventful night though, because it’s possible that the police, seeing that we are not leaving, may try to sweep through and remove us overnight. I know this is not what my family wants to hear, btu I knew about this risk going into non-violent direct action organizing. I have thought about this a lot. I have read about it and discussed it with a wide range of folks (see earlier post “Why non-violent direct action?”). It has been over 3 years since when I first heard about what ADAPT does and now made this decision to be involved in a direct and meaningful way.

I have some pics from my camera phone that I may post later, but I just don’t have it in me right now. I need to find my bed and rest before I need to shower and get ready for tonight’s possible test of will.

For more info about the action, including our platform, see www.DUHCity.org.

FREE OUR PEOPLE!!!!!!!!