PhilosopherCrip

It’s been a week since I returned from Little People of America’s (LPA) national conference in Brooklyn, NY.   Anyone who has been to an LPA conference knows that it takes at least that long to recover.  As expected, the days were spent in workshops and boardrooms and restaurants, while the evenings were spent out in the city or at the dance until the wee hours.  What was different this year was a drastic shift in how LPA presented the event and our organization to the public at large.  I think most members felt this sea change.  For the first time, we took our “culture war” to the front lines rather than simply reacting to the media and it’s chronic offenses.  That is, LPA has finally started to push back against the centuries of mockery.

I would like to respectfully disagree with the claim made by the editors of lpaonline.org that “Similar to past conferences, LPA used the opportunity to deliver a message to the general population that people of short stature, like other groups, strive for equal access to education, employment and social opportunities for the chance to live fulfilling and productive lives.”  It was not mere coincidence that our message took hold this year, as opposed to other years.  Rather, it was that we have finally come together in consensus around the “M-Word” (midget), passing an official resolution that it is an unacceptable way to describe folks with dwarfism.  In addition, we made the unprecedented move of filing an official FCC complaint against a troubling episode of Celebrety Apprentice, in which the M-Word is dropped 12 times and Joan Rivers offers “Well…I have a terrace. We can hang them [midgets] out on my terrace” during a discussion of how best to objectify LPs for marketing/advertising purposes.  [See the above link to LPA's hyper-link to download the complaint form and help out!]

For a detailed discussion of why the M-Word is troubling to our community and the complexities of the LP community’s relationship with the entertainment industry, check out this Salon.com article.  I won’t retread the ground it covers, but have been thinking about how I can personally reconcile my desire to see the M-Word go with my strong commitment to free-speech, which is one of the few negative responses to LPA’s campaign that I think warrants serious consideration.

The always classy Donald Trump...

Theoretically, a commitment to free speech protects those who are fewer in number and/or lesser in power.  That is, free speech protections are not needed to preserve the right of the powerful to express their ideas in any way they find suitable.  Rather, free speech is what preserves the dissenter’s right to speak his mind.  It does not exist to preserve the rights of the major network news anchor to report on the “swine flu,” but the disabled, poor, war-veteran-turned-protester to burn a flag in the street to express his angst at an unjust war.  Because we supposedly cannot predict which opinions will become popular among the powerful, we must protect everyone’s ability to express themselves, in the hope that the “market of ideas” will ensure that the truth prevails.

So, what do we do when, in practice, the protection of free speech is used to condone actions of oppression by the powerful?  For instance, when it is used to protect celebrities on Donald Trump’s TV show and their disparaging remarks about a group that is taken as culturally acceptable to ridicule and mock in mainstream media?  Doesn’t this seem counterproductive to the goal of protecting the vulnerable?  Too often, it seems, “free expression” is used to justify the powerful’s refusal to accept limits on how they exert their cultural dominance over the powerless.  Surely, this is not just true for LPs and others with disabilities, but has also been historically (and still is) the case for women, queer folks, people of color, and the rest of the “laundry list of oppression.”  How many times have we heard “Political correctness is such bull shit! These fuckin’ [insert favorite slur here] can’t tell me what to say, this is America and I have free speech!”?

What is the upshot of this disconnect between theory and practice?  How do we protect the freedom to dissent while not also exacerbating the suffering of those who are oppressed?  Surely, we cannot make objective distinctions between these two kinds cases without having those judgments infected by our own biases.

I think, whether we intended to or not, LPA has stumbled upon a practical solution to this problem, at least in our case.  While it has been described in the media as a “ban” on the M Word, the action LPA is actually taking is to file a series of complaints with the FCC about a particular show.  How we define success here is important.   If our FCC campaign is aiming to add the word “Midget” to the 7 that you get fined for saying on the air, then perhaps we haven’t made much headway on the free-speech vs. ridicule issue.  However, it seems that a more realistic, and perhaps more favorable, outcome would be to use this as a way to raise the profile of our repeated objections to the public ridicule of people with dwarfism.  The FCC campaign has earned slots on cable news shows and an AP article that has run in hundreds of outlets, while our earlier attempts have been a mere whisper in the storm.  I am hopeful that this will, at least, raise awareness among those who want to avoid ridicule and keep LPA from being somewhat complicit in a form of cultural oppression through inaction.

Sure, even a ban won’t keep Howard Stern from dropping the M Bomb (he’s on Satellite now apparently, anyway), but this level of media coverage SHOULD help ignorant, but otherwise well meaning folks to gain exposure to the dwarfism community beyond what is portrayed by the Stern types.

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…”

I am not a lawyer and don’t know very much about interpreting law. However, it seems to me that the case of Micah Fialka-Feldman is a pretty classic example of those in power hiding behind “policy” as a way of masking their discrimination. Fialka-Feldman is 24 year old student with a mild intellectual disability who wants to live on the campus of Oakland University near Detroit. Micah attends 16 credit hours of classes per week and pays full time tuition. Yet, University trustees and officials have repeatedly rejected his requests to live on campus and forced him take a 2 hour bus ride each day to attend their university. They justify this decision by pointing to their “policy” of only allowing students in degree granting programs to live in one of their 1,800 dorm rooms, some of which remain vacant. The logic behind this decision, which has been tentatively supported by a federal judge, is that Micah would be seeking unequal opportunity by asking that the policy be waived for him when other continuing education students were denied the opportunity to live on campus.

On the face of it, this seems like it may be a justifiable decision, right? After all, the university is not JUST rejecting Micah’s claim on housing resources, but all 1,400 continuing education students who are taking classes but not earning a degree (although, it’s my understanding that there was some backpedaling done to try and be consistent with this policy and some English as a Second Language students were no longer allowed to live in the dorms, once it was apparent a law suit was in the works). Let’s put the ESL cases aside and look only at the “facts” that are being reported in the main stream media. That is, let us take the university at its word and consider the justifiability of denying Micah housing because of this policy.

Micah on his campus

First, it needs to be understood that virtually EVERY case of discrimination and bigotry can be framed in terms of a “policy.” The rhetoric is always the same. Opponents of same sex marriage argue that they have nothing against gay people, but don’t want to give them the “special privilege” of a state sanctioned marriage that can only happen by waiving the policy that marriage is defined as being between one man and one woman. Women are not being discriminated against when they are denied employment and advancement, but rather, there is a policy in place that excludes people who may become pregnant at some point. People with disabilities aren’t being segregated and incarcerated in nursing homes rather than receiving support services while living in their own homes with friends and family, they are merely being medically treated in accordance with the policies of Medicaid.

The fact is, policies aren’t handed down from God, accidentally resulting in some discrimination. This policy is not some kind of natural law. Policies are MANUFACTURED , sometimes according to bigoted attitudes that are already in place. The activist has always recognized this and never accepted the excuse of “that’s our policy.” Essentially, policies are the codification of existing habits, many of which are chauvinistic in various ways.

The question to ask is not “why does Micah deserve special treatment and a waiver of this policy?” but “why is the policy written in this way and what else could it look like?” When we ask the question in that way, it becomes clear that this policy is a thinly veiled case of discrimination. There is no housing crunch at Oakland University. I can hardly imagine that all of the 1,400 continuing ed students would want to live on campus, squeezing out the matriculated students. Typically, continuing ed students are not of typical college age and lifestyle and it would be absurd to think that they will flock to the dormitories.

So, if the possibility of a housing crisis is not driving the manufacture of this policy, what could be the justification for keeping away “non-degree earning students?” I have seen plenty of references to the “policy” justifying the exclusion of Micah from living on campus, but where is the justification of the policy itself? Why is whether a student is enrolled in a degree granting program or not at all relevant to whether they should be able to live on campus? Of course, the University could not allow just anyone who wishes to live in university housing to do so. It could not be the case that anyone off the street is allowed to move in, regardless of affiliation with the academic institution. However, why is the bright line drawn at whether a student is earning credit toward a degree? How is this at all relevant? Wouldn’t it make more sense to draw the line at whether a student is enrolled full time and needs to have space on campus because she is spending a lot of time there?

So, if there is no housing crunch at Oakland U that would be impacted by a more inclusive policy and there is no obvious connection between earning degree credits and living on campus, why has the university chosen to manufacture this policy in this way? What existing habits are being codified here and are they worth preserving?

Is it unreasonable to suggest that this policy is a throwback to the dark ages of not wanting to live with “those kinds of people?” Is it far fetched to think that a policy of keeping non-matriculated students off campus is a desire to keep at arms length those who differ from us in age, class, and, yes, disability?

Finally, as an educator and especially as an “almost philosopher,” some critical questions that were recently raised by Micah’s dad struck a strong chord with me. When trying to clarify our thoughts on this situation we should not limit ourselves to a critique of this particular policy, but also try to think in new ways about some of the most fundamental assumptions we make about education. This situation highlights in some very interesting ways questions about what a student is and what the purpose of education ought to be. I will leave these for another post.

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!!!

Kamani Hubbard was born this month in the bay area.  This baby boy is described by his parents and doctors as “healthy but incredibly rare,”  “an interesting and beautiful variation rather than a worrisome thing,” and “remarkable” because he was born with an extra digit on each hand and foot.  This article highlights the notion that each of these extra fingers and toes are “fully formed and functional” and so they might be left alone so as to “help others grasp the importance of embracing difference.”

As these doctors are patting themselves on the back for being so damn open minded, this same article is built upon some deeply disturbing assumptions about normality.  The doctors attempt to dress the issue up as a matter of function.  For instance, Dr. Michael Treece, the family pediatrician righteously proclaims “It’s merely an interesting and beautiful variation rather than a worrisome thing … I would be tempted to leave those fingers in place. I realize children would tease each other over the slightest things, and having extra digits on each hand is more than slight. But imagine what sort of a pianist a 12-fingered person would be imagine what sort of a flamenco guitarist, if nothing else think of their typing skills.”  The journalist covering the story also acts as if the issue at hand is mere function, when he matter of factly states “because the extra digits are functional, it’s not a deformity to be discarded.”  Yet, even in that quote, just below the surface is a viewpoint about aesthetic normality.

The baby’s mother is more straightforward when she says “Nurses and doctors, looked so normal they couldn’t tell, they told me he was six pounds in good health, that was all they said.”  Clearly, this is a case like many others where functionality is conflated with aesthetics in an attempt to obscure ableism of the deepest kind.  Arguably, even though this case will likely NOT result in surgery because this baby was judged to be normal looking enough by the medical establishment, we can place him on a spectrum along side others who were not so lucky.  For example, intersex folks have had unnecessary and painful reconstructive surgery on their sex organs as kids because of how they looked; or adolescent dwarfs sometimes “choose” to have outright torturous limb lengthening surgeries that entail breaking and then separating the long bones in the arms and legs so they are closer to normal looking; or even Ashley X who, at the age of 6 had her growth  “attenuated” with high doses of estrogen and her breast buds and uterus surgically removed so she would be more “dignified” in a body that was “more appropriate for her mental age.”

Philosophers aren’t supposed to get this fired up from what I understand.  We are supposed to be calm and balanced and rational in our deliberations, not write inflammatory blogs filled with scare quotes.  But it’s so hard to be bombarded with these social attitudes that drive the use of biotechnology (sometimes in quite brutish forms) to squeeze children into a box of what normal looks like according to our culture.  Congratulations doc, you are going to allow the 12 fingered wonder to escape your scalpel and grow into f#%*ing Beethoven because his extra fingers were almost unnoticeable.  This kid can increase beautiful diversity, but if his extra fingers were a bit more gimpy looking, off they would come so the other 4th graders don’t make fun of him and he will have an easier time getting a prom date.

Kyle Maynard will kick your @$$ with his dysfunction!!!

That’s my point here, these doctors talk about function, but in the next breath talk about social beauty standards.  Since when is a finger’s “function” to be pleasing to look at so it avoids mockery?  I have a stumpy finger for you, right here doc.

As philosopher Ron Amundson has shown, even if we take this notion of function seriously, it falls apart fast.  Function is ALWAYS a matter of context.  Namely, the contexts of environment and goals.  If someone’s environment fits their body, no matter how it’s put together, they often can function quite nicely.  For example, my computer desk is about 10 inches off the ground and I have written literally thousands of pages from it while sitting on a rug over the past decade of college and grad school.  Almost anyone else would come away with horrid cramps and aches, but I can sit here for hours on end, my body functioning with perfection.  Goals are also a key for this notion of “function.”  What ends are we judging when we look at a body and decide whether it will be functional?  Kyle Maynard, the the recipient of a 2004 ESPN Espy Award for the Best Athlete With A Disability, was a wrestling champion without arms or legs.  His low center of gravity and the fact that he was wrestling in a weight class against men who had much less muscle mass (you can beef up and stay at a low weight if you don’t have arms or legs) meant that he had some advantages on the mat.  If his goal was to slam dunk a basketball, he would have a dysfunction, but for wrestling he was one of the best in his state.

Sometimes, there can be biological dysfunction.  You can have a dangerous heart murmer or kidney failure or diabetes.  But, doc, if you are going to tell me about extra fingers and toes, just be straight with me and say that you cut them off when they are ugly looking.

Recently, my friend Annie passed away at the age of 24.  Some of you may know Annie, as she was a crip in Chicago who was a regular face at the Pride Parade selling her 3eLove Tshirts.  The name of this small business was itself a moral imperative issued by Annie’s basic philosophy of life, “Embrace diversity. Educate your community. Empower each other. Love life.”  3eLove was one of Annie’s many projects.  I don’t think anyone knew the details of all the work she did in the crip community and, surely, only Annie’s mind contained the seeds of the work she planned to do.  It’s my understanding that some of those plans included “beginning her PhD coursework in Community Health, suing the hell out of the state of Illinois for all of the misery that they put her through over P.A. hours, helping me [her brother, Stephen] write a disability education model and marketing it to school districts, writing a book, going on Oprah, and then going on a national ass-kicking tour.”  Those were just her plans for the year 2009 and, knowing Annie, they weren’t that exaggerated. To get a sense of the circumstances of Annie’s passing, check out the facebook note her brother wrote about those series of events.  That is not my story to tell.

Knowing Annie as a person and as an advocate (I don’t like the term, but it’s one she used to describe herself), there seemed to be a unity to her work.  That unity was a radical pride and active rejection of the stigma and shame that society heaps upon crips.

Let me back track a bit.  We are told that the kinds of help we need is not “normal” and that our way of living is one that should happen in isolation.  Even still, this isolation is enforced with the coerced segregation of people with disabilities into nursing homes and institutions.  We are seen as the Other and told that having “pride” means hiding anything about us that deviates from the cultural norms.  Even some of my most powerful activist friends struggle with shame at some of the ways their life is different from the typical.  They want to hide the markings and symbols of their difference because that is what we are told “prideful” people do… they try to normalize and assimilate as much as possible.  I know I have been guilty of this as well throughout my life.

The beautiful, inspirational Anne Marie Hopkins, 1984-2009

This definition of pride is what Annie made an active attempt to completely and utterly demolish.  The insight that Annie taught me is that crip pride is not about banners and marches and t-shirts and policy papers.  Crip pride is as simple to understand as it is morally grueling to achieve — we must live visibly on our own terms, as we are, without apology or shame.  This is what Annie achieved in a way that I have never before witnessed, but hope to witness again in others among our community.

To understand what I am talking about, take a sample of how she lived her life as a crip publicly and without shame by checking out her blog, “Annie D and the Band of Love.”  Some instances of her truly radical pride would be her description of her newly hired personal assistant who, allegedly, dreams of becoming a porn star, “I’m sure wiping ass and hanging out with me will only add to Jame’s qualifications as a cockstar. He is quite pleasant to look at which helps with my well being, porn star or not” … or her cat “For some reason, every cat I have own has always loved to chill in my wheelchair. It always has to be at a very bad time, like when my PAs are trying to move me from my bed to my chair or from the toilet to the chair. He’s always gotta be there. He’s an attention whore I guess” … or her roommate/PA who she keeps around “because he can entertain himself, but we also spend a lot of time together eating, recreating, getting awesome, watching instant netflix, completing our studies, dancing around the apartment, traveling, pooping, urinating, and farting, dog walking, smelling like onions, holding down facilities at UIC, reading and listening to audiobooks.”  Unfortunately, her blog was a relatively new project and so there aren’t as many postings as I wish there were.  I wish Annie had had more time to teach us how to live well.

Annie’s way of living seems to really come up against the “supercrip” narrative in some interesting ways.  The supercrip phenomenon is one of the common possible responses our American culture offers in public interaction.  That is, many times, both strangers and friends will go out of there way to tell a person with a disability how “inspirational” or “amazing” they are, as they go about their daily routine.  Of course, the unspoken premise behind this is a very low set of expectations for people with disabilities more broadly.  “Wow!  Look at that! You go out to eat at restaurants on the weekends and sometimes see a movie!”  The harm of the supercrip narrative is that, by setting up everyday activities as “amazing,” it obscures the idea that people with disabilities SHOULD be doing these everyday things as an accepted and integrated part of the community.  That is, its foundation is the notion that disability itself is something that is overcome rather than social and environmental barriers.  Put another way, the problem with the supercrip narrative is that it implies that the disabled life is, fundamentally, of less value.  The only way average, everyday activities can be seen as amazing and inspirational is if that person is starting off from a very dismal place.  Supercrips are seen as the exception to the rule of disability misery.

Professor Charles Xavier -- some crips really DO have super powers!!!

So, what then, are we to make of Annie’s celebration of everyday life?  If we understand her as inspirational or amazing, are we just dressing up the supercrip narrative in new clothes?  I really don’t think that is the case.  In fact, I think what Annie was doing was dismantling some of those hidden premises to the supercrip narrative.  By rejecting the shame in having her butt wiped and living pridefully, Annie was rejecting the notion that disability is something you “overcome.”  For Annie, her disability was part of her joy in living.  She unapologetically displayed how she had a good life not DESPITE her disability but WITH her disability.  If we could all live like Annie, someday the only supercrips around will be the X-Men.

This will be a quick post in which I try to check my own privilege.  My last few posts have torn into Jerry Lewis pretty hard, while an earlier one warns against demonizing public figures who have bad, yet common opinions about disability.  While I don’t agree with Peter Singer’s reasoning or conclusions regarding disability policy, I quote Harriet McBride Johnson’s line of thought that we ought to not demonize people like Singer for holding the opinions he does because they are common opinions.  That is, his philosophy is based in a social ignorance about disability and so it wrong to use him as a whipping boy or symbol of our opposition.  He is a human being that is just as flawed as the man on the street (or post office, or kitchen table, etc.) that, more silently, concurs with his opinions.  For more on this, see below.

So, why is it that I am so quick to agree with Harriet about Peter while being so quick to condemn Jerry?  Ought we not grant the same benefit of the doubt to Jerry?  Is this a failure to treat likes alike?  Harriet does the same thing in her book, Too Late to Die Young.  Jerry’s condemnation is so fundamental to her story that she named the entire thing in honor of her realization that his bigotry was grounded in ignorance (she believed for many years that she would die young because of the tragic imagery of the MDA Telethon).  Yet, as I argue below, the major point of Unspeakable Conversations is that we need to rage against ideologies and systems of oppression without demonizing individuals.

Have Harriet and I both got it wrong?  Do we extend our common courtesy to Singer because he speaks our language?  He has very dangerous opinions, but he dresses them up in the language of measured, rational argument and so they are somehow more worthy of our respect?  Lewis is a bloated, aging comic with a hot temper who supplies us with an abundance of sound bites.  Singer is much more palatable with his gentle mannerisms and endowed chair at Princeton.  At the end of the day, their basic beliefs about disability are STRIKINGLY similar.  Jerry thinks chair users need to become good at “being a half a person” and Singer believes we have less opportunity to satisfy our preferences and enjoy life.  Isn’t this almost EXACTLY the same thing?  Surely, both men influence public opinion in a big way, one with a telethon being beamed into millions of households and the other by teaching the ruling elite at Princeton.   Why then, do Harriet and I respond so differently to these two men?

It’s possible that it is just a matter of privilege.  That is, I have my own biases about social class, age, and education that make me more likely to have respect and perhaps empathy for Singer but not Lewis.

Maybe, for Harriet it was a strategic move rather than a matter of prejudice?  I think in Singer’s case we may have hope of having a measured debate with him, changing his mind and the mind of his followers with our superior arguments.  For Lewis, with his crude words, we may have a better chance of taking him on with protests, petitions, and perhaps an arrest action or 2.  I obviously have no idea whether Harriet ever considered this conundrum she has set up, but do see how Singer would appear at least on the surface as more persuadable.  Lewis responds to criticism with anger and threats that we need to stay out of public view, while Singer invites his opponent to have a public dialogue.  So perhaps it is not the difference between demonizing one man while defending the other but rather reacting with a style that is strategically the most likely to work?  Or, am I again just justifying my privilege in a new way?