PhilosopherCrip

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?

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.

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.

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?