PhilosopherCrip

Today, I came the closest to arrest I’ve been so far.  It was quite a wild morning.  We were up and out of the hotel before 5am so that we could make the many mile walk/roll to a Hilton Hotel to visit House Speaker Nancy Pelosi, who is NOT a CCA co-sponser (come ON Californians, get on that!).  She was scheduled to speak to the American Hospital Association.  We had a plant on the inside that witnessed them locking up the joint and setting up the police line 15 minutes before our arrival.  Now, our targets are generally not known even to the vast majority of ADAPTers themselves, to keep word from leaking out and give an early warning.  This means that they must have had a very organized effort to predict possible targets based on our trajectory.  Is it me or is that not kind of flattering?

So, all we were able to do at the front entrance was make some noise and make it a bit more difficult for conference goers to get through the front door (but we didn’t totally seal things off).  It would have been COOL to get in that building, but our message was heard at least by some folks today.  For an example, see the video inserted below.

However, I was not at the front of the building where the video footage was being shot.  Instead, I was part of a small contingent of mostly power chair users that was able to get around back and block off the parking garage entrance that Pelosi was planning to enter quietly.  Her motorcade arrived and we gave her a bit of an ADAPT style welcome as she went through the only door that had not been barricaded in the entire building.  When the time came for her motorcade to leave, we tried to rush the street and block her passage to force her to talk to us about long term care reform or get taken to jail trying.  The cops saw what we were trying to do and  stepped in our way after the first few of us got out into the street.  I had the experience of being the person between the group that got past and the group that got stuck behind the new, hastily created police line.  I couldn’t slow down fast enough and actually ended up colliding with a cop.  I’m REALLY glad he understood it was an accident and didn’t take me in on assaulting a police officer.  I had JUST finished telling him that we are a non-violent group and just wanted to talk to legislators who ignore our issue.

He then told me to back up and I refused, shutting off my chair.  I wasn’t going to budge unless ADAPT leadership told me to.  He asked me a few times and I refused each, and then he proceeded to keep extending the police tape, looping it under my chin and across my throat so that my head was on one side of the line and body/chair the other.  He told me “don’t even think about crossing this line” knowing i just had to duck a few inches and charge toward the motorcade.  I told him I didn’t come to get arrested needlessly, I came to talk to Pelosi.  In fact, I thought this made for better visual drama and lay there chanting as loudly as I could (which if you have met me, you know is quite loud) as Pelosi exited the building. I held my ground for a good 10 minutes and got away without “going all the way” as they say in ADAPT.  My arrest record is still clean, though this is DEFINITELY the closest I’ve come with my civil disobedience.

a friend called this my post-modern lynching... but i think that is too strong a description

Next, we paid a visit to the lobbying arm of the for-profit nursing home industry or, as I like to call it, the belly of the beast (an apt metaphor I think, as people’s lives are digested and excreted after all the revenue has been absorbed from them).  They came out and promised us a resopnse to our demands within 30 days, after only a few minutes of chanting.  Now, of course it is VERY unlikely that we will get any sort of positive response.  It’s hard to imagine what a compromise with the nursing home industry would even look like, as we are calling for it to no longer exist.  This would be like slave holders compromising with abolitionists.  It borders on logically impossible!

MI-ADAPT left greater Lansing at around 10pm on Friday evening and drove straight through to DC, with the thought that we would be able to skip a lot of the traffic. This worked out OK.  Kudos to our PA Luke, who drove the van through the night and got us there safe.  On Saturday we settled into the hotel and met up with our friends from other chapters to get excited for the week.  Sunday was the Fun Run, a fundraiser when ADAPTers take laps by foot or wheel around a park to help off set the costs of our actions.  The evening brought pizza (just room service, I have been exhausted since our overnight drive) and a viewing of the original Charlie and The Chocolatre Factory.

Today we got a relatively low key start at 9am.  We began with a visit to Attorney General Holder and the Department of Justice.  We wanted to start a discussion about enforcing the Olmestead Supreme Court Decions in a time of financial crisis.  In a way, the tone of ADAPT has shifted over the past couple of years since the financial crash.

In fall of 08, we staged a housing action because things looked so hopeful for the passage of the Community Choice Act that would require states to offer funding programs for community based homecare rather than just the entitlement to institionalized, nursing home care.  In other words, people would be given a choice about how their medicaid money is spent and could live in the community with their friends and family rather than have every aspect of their personal lives controlled in a nursing home.  Right now, some states have such measures in place, but the CCA would make it mandatory (http://www.passthecommunitychoiceact.org/).   So, at the very beginning of the current economic depression, we began shifting focus toward housing policy so that accessible and affordable housing would be available to people leaving nursing homes.  Housing is a serious issue.  The fact that I live in a college dormitory at 28 years old is testament to how hard it is to find accessible housing at a decent price.

Just two years later, our key focus is purely defensive with the Defending Our Freedom campaign that is organized to try and stop the massacre of community based long term care programs as states cut their budgets.  In other words, because the CCA is not yet law, states are required by law to provide nursing home care, but homecare is optional.  In Kansas, a meals on wheels program is ending that costs 7$ a day, without any thought of of how this is likely to increase the long term costs as more and more people are not able to live independently and find themselves in nursing homes (many more than 7$ each day).

So we began with a demand that the DOJ start investigating cases where people are being institutionalized against their will, which is illegal based on an ADA ruling by the Supreme Court (the Olmstead decision in 2000).  It rained but my chair somehow held up.  The only real result of the weather is that I got to share an umbrella with a cute girl.  We weren’t going to take the building and really escalate things and we didn’t need to.  This hit was more of a reminder than a full on speaking of truth to power.

Next, we moved on to the National Governor’s Association, where we were also aiming to support folks on the state level trying to keep people out of nursing homes.  This was a full on escalation where we took doors and were expecting arrests because of the conversations leading up to this week, which have been less than encouraging, apparently.  Of course, it’s not surprising that it’s easy to say no to a few emails than it is to a crowd of 500 activists that have gained control of the entrances of your building.  So it was again without arrests that we were able to get a promise that community choice options would be added to the Best Practices literature produced by the NGA and distributed to the states.

That’s all for now.  I better sleep for a few hours before we have to line up at 5am for tomorrow’s adventure!!!

The following is an interview I conducted with my good friend, Bethany, who recently launched the blog CripConfessions.com.  I must confess that I have thought of Bethany as a kindred spirit, ever since meeting her.  As fellow activist, disability studies scholar, and little person, we have shared a great deal over the years and here is a small tidbit for you all.  Go read her blog, it’s brilliant!

The radiantly brilliant, Bethany

Joe: I like the ring of your blog name, tell me more. What and why are you “confessing” and who is your confessor?

Bethany: I may as well start this sexy interview with a confession: I’m a nerd and proud of it. I LOVE alliterations and have embraced the label ‘crip.’ It signals disability pride and serves as a fun verbal slap on the face of the ableist world. Thus I needed a hot word to that started with ‘c’ in my title to satiate my need for mental masturbation.

Additionally, the overall purpose of my blog is to provide a platform for me to confess (i.e. share ideas that are traditionally not voiced) thoughts that I feel like disabled people just aren’t talking about publically, such as internalized ableism, the meanings of dating a nondisabled person, etc. I want to confess my truth because I think it can be a healthy catalyst for a communicative revolution. It is time we at least talk about these things with each other. I feel like here is a political impetus to be silent about some of the frustrating and painful aspects of disability, as we are all supposed to be pushing a disability positive narrative. Frankly, I feel that approach is not emotionally honest and actually can do us more harm than good.

Joe: What moved you to start a blog? What do you hope to accomplish with it?

Bethany: A noticed a disability blog carnival coming up on relationships and wanted to write something about my thoughts on my relationship. Being in a relationship with a nondisabled person has caused me to really think a lot of the desirability of my body and my ability to care. I wanted to share these thoughts with other disabled people in hopes of getting a conversation started on the topic. That’s one of my favorite things about social media – I can connect to a larger community of crips than those in my area. I feel connected to my people and thrive on that.

Also, I have been reading and thinking about the role of social media in translating research findings into mainstream culture. As a scholar-activist, I need to be intellectually rigorous but I also need to transmit these ideas to larger culture in order to try to create substantive social change. I see blogging, tweeting and Facebooking as wonderful outlets to help realize this desire. I have also decided I want to get into film making – because I realized if I disdain most representations of disabled people, why shouldn’t I create the media I want to see?

As I have said, I would like my blog to be a communicative catalyst to get people talking about things that we shy away from. I feel like confessing my truth – and thereby rendering myself really vulnerable publicly – can provide space for others to do the same. Through telling my truth, it may make it easier for others to be emotionally naked because we would all know we are not alone.

Joe: Talking about accomplishments, what kind of work do you do when you aren’t blogging? How do you see CripConfessions.com fitting in with the rest of your work in the disability community?

Bethany: I’m a trained lawyer and a sexologist. At the moment, I am clinical professor and policy analyst in the Center for Leadership in Disability at Georgia State University. I teach some classes, capacity build with our community partners, host events, and advise a disability student group on campus. I diligently strive to infuse everything I do with radical crip politics so that I remain true to my life purpose – the social amelioration of people with disabilities. When I was 20 I decided to devote my life to disability and I am sticking with that.

CripConfeesions fits into my overall work because I am devoted to raising awareness and creating social change for disabled people. Through blog posting, I hope to add to my other work by providing a personal glimpse into my nuanced reality. I want more people to understand that disability is not a personal tragedy, but is an artful way of being. Of course, as a sexologist, I also want people to see disabled people as desirable and viable sexual/love partners so I hope some of my posts make some people realize how deliciously sexy disabled people are. CripConfessions then is just one part of the overall revolution of consciousness I seek to be a part of.

And it’s really exciting that we are building a community of young scholar-activists. We are the upcoming leaders of our movement and I think it’s really beautiful that we support each other and our work. We need each other!

Bethany and I making a crip sandwich out of her partner, Sara, at the Atlanta ADAPT Action

Joe: Like myself, I have always thought of you as someone that fancies herself to be both a scholar and an activist. Do these roles ever come into conflict for you? Do you ever experience any dissonance when trying to work in two arenas with such different cultures and sets of values?

Bethany: You’re right; I’m a scholar-activist. The roles do conflict at times because my radical politics do not always feel satisfied in the work place. People do not want to hear about privilege and power at work; they want to do their jobs to get paid so they can live. But as an activist I can’t and won’t silence myself, sometimes to the determent of my mental health. A colleague recently told me that it must be exhausting to constantly view the world as animus filled against certain people and he is right – but that will not stop me. More people need to be critically conscious about their realities and I think it could be even more emotionally exhausting if I were silent about the issues I care most about.

Also, though the complaint has been levied by many people – it’s worth repeating: the academic world is not accessible to most people and some of the revolutionary ideas that are created in the ivory tower never reach the masses. I want to marry these two things. I want what I write and think about academically to become reality. This is why I have tried to work toward making my work more accessible; blogging has really helped me in this shift. I want to change the world not just publish or perish.

Joe: Why have you chosen to do both? Couldn’t such tension and conflicts be avoided by doing just one or the other? Is this a matter of personal life satisfaction or is it that you think your work is better served?

Bethany: Sure tension could be avoided if I would just shut-up and consent to being a cog in the interlocking systems of oppression that screw over countless people. I could have been a lawyer – slaving away at a job that means nothing to me for good pay but I would have hated myself and my life. I cannot live my life in a way that is not true to my crip ethos. It took years to be able to look in the mirror without cringing at my disabled body and I want to do everything I can to change social views of disability so people do not have to go through the self-loathing that I and so many of my comrades go through.

And honestly, the grappling of tension in my roles is good fodder for debates and adding nuance to my arguments – which is intellectually orgasmic! Being a person with multiple locations/identities and passions is the kind of human I want to be. It’s really the only way I know how to live.

Joe: A lot of folks that work in the disability community seem to have their niche passions and while I have met a few people really interested in the intersections of disability and sexuality, none have really made it into their life’s work, like you are. What’s the deal here? Why is crip sex so important to you personally and professionally?

Bethany: On a very base, primal level, I confess, I am a hedonist; I love pleasure.

But on a deeper level, I experienced a confluence of a few really pivotal things that shifted my life focus to sexuality. In 2005, I was in law school and with every passing day there, I lost faith in the law to create social change (the reason I went to law school in the first place). That spring I hosted a conference about sexuality and disability. It was the crowning achievement of the many events I hosted at the University of Florida because it ROCKED the campus! I brought together some really amazing people including artist/activist Sunny Taylor, motivational speaker Greg Smith, crip sexologist (and my mentor) Dr. Mitchell Tepper, and former adult film-star Bridget the Midget Powerz. I was right in thinking a former porn star would attract a crowd, even for a disability focused event. We had a great turn-out for the event despite the downpour of rain and we addressed some serious issues of internalized shame, feeling undesirable and discovering sexual pleasure. In the process, I learned how comfortable I am with talking about sexuality and that it is a real professional asset. The whole experience was really profound and the after-party was one of the best parties I have EVER been to

Less than a month later, I lost the first man I ever loved to suicide. Karl was a beautiful Norwegian that I met at a Rehabilitation International conference in Oslo. We shared views on disability pride, using the media as a tool for social change, among other similarities. I adored the man and spoke to him via phone and email as often as I could. We spoke of me moving to Norway after completing law school – and despite my serious weather bigotry (I’m a Florida girl), I was ready to move just to love him.

One morning he called me around 5 am to confess to me something he had struggled with telling me since we meet a year earlier. He explained he did not have normative erectile functioning stemming from his spinal cord injury he incurred 16 years before his confession to me. I explained to him that his penis was not what attracted me to him, that sex was bigger than a penis and that he could give and receive a lot of sexual pleasure. But my words did not meet him. That was the last we talked. I learned from his sister about a month later that he had hanged himself. It was one of the most devastating periods in my life and I credit my friends for keeping me alive. I struggled to eat during that period as I just did not want to take care of myself. I cried and felt purposeless for months.

I realized in the grieving process that I was not just mourning Karl’s death – but I was mourning all the other disabled people who suffer in silence over the issues of sexuality. I vowed then to devote my life to changing the conception of crip sexuality so that other people would not hurt the way Karl did.

This gets to the point of the importance of confessing; if Karl had confessed his pain sooner perhaps he could have processed it instead of ending his life.

Karl, a lost comrade

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?

Below, I have pasted in an Associated Press article about how Geogia Governor Sonny Perdue has appointed a new czar to oversee the implementation of the Supreme Court’s Olmstead decision.  The article doesn’t mention ADAPT’s non-violent direct action that drew Perdue’s attention to this issue (recall we took over the state capitol on Columbus Day) and “suggested” this exact solution (it was in our list of demands).  But ADAPT is not in it for the credit.  We are in it to FREE OUR PEOPLE and some work was done toward that aim in Georgia!  In our best chanting voice, everyone together now, “Sonny PerdUE! We thank YOU!” (repeat 109x).

“Janes to head Ga. plan to better care for disabled”

ATLANTA (AP)  Gov. Sonny Perdue has announced he is appointing William Janes to oversee a plan to improve services for those with mental and developmental disabilities.

Perdue said Friday that Janes will be a key asset as the state’s Olmstead Coordinator and knows the best way to serve that community.

A 1999 U.S. Supreme Court case found that the Americans With Disabilities Act requires states to care for elderly and disabled people within their communities, not institutions, whenever possible.

Tommy Olmstead was commissioner of the Georgia Department of Human Resources at the time and had been sued by two institutionalized women who sought community-based care.

Janes most recently directed Florida’s Office of Drug Control and was assistant secretary of substance abuse and mental health in Florida’s Department of Children and Families.

So, my netbook decided to start hating the hotel wireless in Atlanta and I never had the time or inclination to buy the wireless service when I moved on to DC, so here I am back in MI wanting to say something at least about the final 2 days of the Atlanta ADAPT action!

Tuesday was, by far, the most intense of the 3 days of direct action.  We assembled in the ballroom, as it was still raining, before venturing forth to the Health and Human Services Office of Civil Rights regional headquarters.

Our aim was to start an authentic conversation about enforcing the Olmstead supreme court decision in Georgia and the surrounding south eastern region.  Complying with this ADA case law would mean providing long term care services to people with disabilities in the least restrictive setting, namely, not an institution.  The case was decided a decade ago, in 1999, but there are not mechanisms in place for the government to hold itself accountable to the ruling.  ADAPT showed up in force to raise this issue in a way that a few local “advocates” cannot do on their own with polite phone calls and letters.  This is not to diminish the efforts of those in Atlanta working every day to free our people.  However, there comes a time when power is so unbalanced that direct action is the only way to create the tension necessary to force dialogue.  This is where non-violence steps in.  It was many of those phone callers and letter writers who asked ADAPT to come to Atlanta to seek the justice promised by Olmstead and many of them were with us the entire way.  Georgia seems very fired up and ready to push back.  We are all ADAPT.

Non-violence up against the security barricade in the very crowded lobby of HHS OCR

So, we basically blew past security and forced our way into HHS OCR.  A few hundred of us made it inside, and I was one of those who made it through the door but not past the security barricade.  A few hundred more ADAPTers were outside, blockading the front entrance and displaying our orange banners, decrying the government’s inaction when it comes to getting folks with disabilities out of the ghettos and warehouses.  Inside, there was quite a bit of chanting and some overzealous security guards (who we later began referring to as “rentacops”) actually turned to violence.  I had seen folks manhandled before at ADAPT actions, especially non-chair users, but the reaction of these guards was not anything anyone expected.  We were loud but peaceful and these guys started picking off and forcefully cuffing anyone who was walking while being loud.  This pissed me off quite a bit because it implies that those the guards perceived as non-disabled must be the leaders.  At one point, a guard told a women I was sitting next to that doesn’t have an obvious physical disability that she was “putting all of these people in danger and there are better ways of doing things.”  I don’t think he expected me to tell him off in a very cool, but assertive way, explaining that I had driven all the way from MI to be there and hadn’t been tricked or even asked by someone without a disability to be there.  I then explained that not only was this my free choice, but I had become convinced that non-violent direct action and civil disobedience were necessary, highly effective negotiation tools after reading Martin Luther King’s book Why We Can’t Wait, documenting the Birmingham anti-segregation sit ins and all of the strategies behind them.  This gaurd was a very large, intimidating black man but I think my explanation about King struck a chord with him.  He more or less shut up the rest of the time and I actually caught him subtly tapping his foot to the beat of our Community Choice Song later.  Some of the other guards were not so willing to talk.  I saw one kid who jumped over the baricade wall knocked to the ground face first and put in a headlock as he was being cuffed.  Did I mention he was an amputee who jumped out of his chair as he went over the wall?  Another young man, without a physical disability that I could see, was actually thrown by an angry guard head first into a marble wall.  No one from ADAPT, that I know of reacted with violence.  We were true to the tradition of fighting for civil rights without physical violence.  It is through a willingness to experience violence without reacting with violence that we will find justice.  Ultimately, the suits at HHS OCR agreed to a meeting the next day that resulted in a promise to put in place mechanisms to enforce Olmstead.  There were some pretty badly bruised ADAPTers, but no one was seriously injured.

After, eating lunch on the HHS OCR patio, ADAPT formed up again and pulled off a SECOND action at the regional headquarters of the office of Housing and Urban Development.  By that time, the police really were starting to understand what ADAPT was in Atlanta to do and that we were not a typical group of mild mannered, smiling cripples.  I, however, was a smiling cripple when we moved out toward the HUD office and a police helicopter began circling over us in anticipation of where we were marching to next!  This made me proud.  It made me feel like those with power were taking notice of us, finally, and showed us some degree of respect, even if it was respect through fear.  HUD was mostly a more mild encounter.  Laura, another MI ADAPTer who was in the first wave that blasted through the door, experienced some violence when a guard at the elevator bank grabbed her chair’s joystick and crashed her, legs first, into a pile of chairs when she refused to move.  She took some bruises that day.  Ultimately, we were successful there too.  We were offered a meeting in a matter of minutes, which resulted in promises to improve the accessibility of low income housing in that region.  This was a meeting that Georgians had been trying to get for, literally, years.

The next day, it was still raining.  ADAPT made its move on CNN’s world headquarters.   I’ve thought a lot about why the media has ignored our issue for decades and am persuaded by Chomsky’s analysis of how the media serves corporate power.  Not that CNN is in bed with the nursing home lobby, but the media’s first priority is to bring in advertising revenue and long term care is not an issue that will keep the folks with the buying power tuned in.  White picket fence suburbia wants to know about the swine flu and balloon boy and so that is what is aired to maximize profits.  Soccer moms and 6 pack dads can’t always relate quickly and easily to the community based long term care issue (although they could definitely get it if it was presented in the right way).  It is confusing and often seen as something that only affects a small, stigmatized group (of course, this isn’t true as nearly everyone will aquire a disability from aging and require long term care eventually).  Anyway, we got the attention of CNN and generated some interest in a follow up segment to try and make up for a mistake made by CNN’s medical guru Sanjay Gupta, who mistakenly explained that the community choice act had something to do with making hospitals more wheelchair accessible.  We will wait and see if the story ever runs.  At the very least, they can no longer claim ignorance of the issue.

This pretty much sums up my summary of the Atlanta action.  I will be writing more about it in the coming weeks, but it will be more relective and less tied to the actual events of the week.

There is so much I could/would want to talk about, but I need to keep this quick.  This morning, I went out, in the pelting rain to try and get some ADAPTers who were across the street lining up for the march, as they were told to do last night.  It was about 615am and still dark, and they hadn’t been told that we were delaying launch because of the hard rain.  The darkness kept me from realizing how deep the water was rushing down the street.  I made it through, but stalled on the sidewalk.  My chair started up again briefly, but is now sitting in my hotel room, unusable.  I’m hoping it starts up again, but am unsure and pissed off.

Since then, I’ve borrowed a manual and been pushed to everything from meals to the storming of the state capitol.  It wasn’t our original target, but we were quite effective there.  I was in the second group in and we made it to the second floor lobby before state troopers started to arrive and block elevator access.  Because it was a holiday, most of the action actually happened outside where we were visible to news crews and passersbye, complete with he drama of the police bodily removing people (both walking and wheeling) from the doors.

Michigan and Chicago ADAPTers chanting in the lobby of the Georgia Capitol

While it was less dramatic, having a few hundred people chanting their asses off in the lobby gave us the negotiation positioning.  People were getting dragged out the front door in cuffs during a business day would have made for better media drama, but we got what we came for.  Talking about chanting, my efforts were rewarded with the use of a bullhorn today!  I chanted my throat raw, but it was good fun.  Our full demand list was not met, but we did get a meeting with the Governor’s chief of staff tomorrow, which is a pretty big deal.  Apparently, no disability controlled  group has ever met with anyone that far up the chain of command, just passed along and over and aside.  It’s hard to brush aside direct action.  That is why we do what we do.  It felt good to descend upon a city that doesn’t see much of disability direct action and have the backs of our brothers and sisters in a very tangible way.

At this point, I’m pretty tired and have to be up really early to get ready to hit tomorrow’s target.  Yesterday, I spent the entire day in the car.  I mean this literally. I left my place at 930am on Saturday.  I parked in Atlanta at 530am on Sunday.  It should have only taken 14 hours, but we had some setbacks.  I will leave it at that. My van is still functional and I am still functional, but I won’t be if I’m not in bed soon.  Not all of the ride was negative though.  My new friend Joe, who used to work as a radio dj, controlled my radio and we had quite the late night sing along (everything from the Rolling Stones to Jewel to Nine Inch Nails was to be had).

Today, I drank  an energy shot (called “Full Throttle” and it tasted characteristically like evil in a tiny plastic canister.in the morning and that has kept me moving, in some fashion.  At least I seem to be able to put these sentences together well enough.  I began with a training as a new “Color Leader.”  Now, when folks refer to ADAPT as the “militant” wing of the disability rights movement, they are more accurate than they may realize.  To some degree, ADAPT’s organizational structure is a representative democracy as actions are being dliberated and planned.  However, when the wheelchair tire rubber meets the road, we turn into a highly authoritarian, quasi-militaristic structure, complete with chain of command and an expectation to follow orders exactly.  This has all been a matter of reflection for me (particularly how trust relationships operate within a direct action activism structure), some of which will hopefully find its way into a future blog entry.  Anyway, a Color Leader can be described as anything from a sargent to middle management to a person trying to hurd a pack of cats.  I think the best I can do is to say that we are responsible for communicating between the strategists and the foot soldiers, keeping them orderly, safe, and fired up.

My favorite part of this is the chanting.  That’s always my favorite part of any action really.  It’s down right therapuetic for someone who spends almost every day identifying and analyzing social structures that oppress people with disabilities in various ways.  This leads to a great deal of pent up rage that a good chant can help release in a constructive way (constructive in that it  raises social awareness to at least sme degree).  Today, as color leader I was able to actually lead the chants.  I was even getting looks from other cover leaders for what I refer to as my “battle voice” (I don’t ACTUALLY refer to it as this, except to myself in my head).

Also, this was the first time i’ve experienced the rush of an act of civil disobedience.  I was one of a few chair users blocking traffic in downtown Atlanta so our rowdy procession could pass uninterupted.  A motorcycle cop came up to me, demanding I move and saying that he “couldn’t hold up traffic forever.”  I said I couldn’t do that.  He said “I’m an officer of the law.”  I told him, very calmly, that I was certain we had a parade liscence and that he didn’t have to help us block traffice, I had the situation under control if he had something else he had to get to.  When he saw I wasn’t leaving unless he was ready to physically remove me, he got on his bike and road off.  I wonder f I’ll see him tomorrow when we are out to actually be disruptive.  I had no guilt at holding up a few cars from their Sunday drives for a few minutes if it did some work to raising awareness around how people’s entire LIVES were being held up as they were institutionalized - indeed incarcerated - against their will by the Federal and State benefits system.

We finally ended up at the famous Ebaneezer Church, which is now a memorial, museum, and gravesite of Martin Luther King Jr.  The tone of the gathering changed as we entered the rose garden, the anger leaving our voices and our hearts as we heard from nursing home survivors, one of which who was institutionalized as a child because of seizures and hadn’t had anyone sing her happy birthday to her outside of an institutional setting for 43 years.  We also sang many community choice songs, and concluded the outing with a slow, deeply moving march home past a nursing home as we sang the famous civil rights song “We Will Overcome.”  The nursing home had a barbed wire fence around it and signs on the front doors that read “Do not open these doors” in red letters.  I do hope the residents there saw, heard, and understood what it was we were trying to do.

Tomorrow sounds like it will be a series of serious challenges to even get to our target.  This will include a march through a day long rain storm.  This will be a small price to pay compaired to the suffering of the people who live behind doors that refuse to be opened.  To those who would not have us open the doors to people wasting away in nursing homes, I leave some lyrics “Amp up and amplify, Defy, I’m a brother with a furious mind, Action must be taken, We don’t need the key, We’ll break in!”  Atlanta has no idea what kind of power is about to hit it.

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!

I haven’t had time, with the beginning of a very frantic semester, to write a new blog in a while.  While this isn’t really an original essay, I think readers will take away something from the video below where I and others are interviewed by the Michigan Disability Rights Coalition about the meaning of Disability Pride (turn on captioning by clicking the arrow button on the bottom right of the viewer).  The video is followed up by a paste of an email dialogue between myself and a friend who identifies as person with a disability and just began law school at MSU.  I think it gets at the heart of why pride is so central to our movement.