Oct 03

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.

Andrea September 16 at 6:37pm
Disability pride is about expressing to society that disabilities are not negative and should not be perceived as something lacking, broken, or sub-par. Disability pride is a necessary ingredient in the larger diversity movement as it furthers the idea that differences are not only to be tolerated but also celebrated. Disability pride is about moving away from well-meaning yet demeaning notions (e.g., what’s inside is all that counts, she’s cute for a disabled person, etc.) and instead giving people permission to acknowledge that bodies are indeed integral to attraction but that the classic concepts of beauty may be what’s limited.

Hence, if the disability pride movement is successful, people will begin to look at disabilities the same way they look at different clothing styles and music genres — different, sure, but interesting, valid, and maybe even attractive. Some hotties have sexy foreign accents (–we all know diversity is attractive!); some hotties have sexy titanium wheels (–why is that not the same thing?)

Disability pride, therefore, is much more than an insular community of disabled people validating each other’s worth… It’s about inviting others to see us how we see ourselves, and about replacing fears and assumptions with the dialogue and genuine interaction that are essential for true acceptance. If non-disabled people can gain more than a voyeuristic TV snapshot of people with disabilities, they will realize that people are people and that there’s really nothing to be awkward about or retract from. But, this can only happen through integration, thus it is essential for the “disabled community” to resist the exclusivity that is often cultivated by marginalized groups. If we keep ourselves isolated from the larger community or keep non-disabled people on our own sidelines, we are contributing to the very social divide that we are trying to overcome. Disability pride is about Not having to be like everyone else and about boldly projecting, “I’m here, and you’ll realize I’m extremely capable (and probably also think I’m cool) if you take a few minutes to get to know me.”

When the public looks upon my disability as they would a new hair style or indie band, and when people of all abilities are involved in each other’s lives on every level–not only professional and academic but also social and romantic–that’s disability pride, and that’s when everyone will be the most fulfilled.

Joe September 16 at 6:53pm
Very nice analysis Andrea! It’s a very fine line between building an authentic group identity that one can take pride in, while not becoming isolated. The issue at hand is that we can only begin to see ourselves as sexy and so forth if we are able to see ourselves as a community in the first place. For the indy band to have groupies, the band must itself first exist. We want to invite others to see us as diversly beautiful (which we are), but we still need to do a lot of work ourselves as a group to really believe it! There are so many people who are ashamed to even identify as having a disability!
By the way, your titanium wheels ARE totally hot. Joe A saw you in the caf a few weeks ago and was like “Dude, there’s a new crip chick in Owen with a really cool titanium chair. She’s hot and I bet you’ll try to hit on her.” While he is not one for subtlety, the man speaks the truth!
Andrea September 16 at 7:05pm
Good points about group identity. I guess having spent most of my life on the non-disabled side of the fence, I am such a proponent of integration. I wonder, though, do you need to be part of a community to see yourself as sexy? Can a disabled individual just look in the mirror, look around himself, and say, “Yep, I’m hot!”?

On the flipside, as you pointed out, I can see the value of comradery and support to help one another build this confidence, especially for those who may feel ashamed. For me, though, it’s hard to comprehend the shame that may exist because I have never perceived disabilities as anything but cool. Maybe I need to cool my gung-ho inclusiveness a tad so I can take more time to appreciate people’s emotional vulnerabilities.

Thanks for the kudos about my chair and look. I want to make sure I do my part to help the world see that differences can indeed be hot, even physical differences that impose challenges on my life. Of course, the unlucky guy who ends up dating me will have his work cut out for him — I need to complain about my pain in order to deal with it, I need backrubs, I can be a party pooper / homebody since I am so often feeling miserable. But, for me, those issues are all part of my personal life, not my public life — yes, I do suffer a lot, but that’s not for others to use against me in assessing if I am cool enough to be included in their social sphere.

What do you think of all of this? I am enjoying exchanging perspectives with you. We have some very different perspectives since you’ve always had your dis while mine is acquired, and our dis’s are different in nature. Though, I should let you know, power chairs are hot, too, not just manual ones :) It’s mostly about the image the individual projects, and the pride in their assets — nice eyes, nice wheels, same deal…

Joe September 16 at 11:11pm
For me, it’s less about emotional vulnerabilities and more about radical culture shift. I think our ends are the same of wanting folks to be able to look in the mirror and feel confident in who they are and how they are. The celebration of difference within American culture is exactly what I’m getting at here. In an ideal world, disability would be seen as the neutral trait that it is.

However, as it is now, our culture does not celebrate our difference. We do not live in a world in which it is seen as a neutral trait like eye color. We are constantly being normalized by doctors and teachers to fit into the various boxes of the ideal. Most folks’ conception of what it is to be disabled is fed to them by Jerry Lewis and the like. This message that we are “less than” is many times internalized by people with disabilities themselves, and they come to believe it in various ways. Disability pride is meant to create a space in which someone can reject this notion of “less than.” It is an unapologetic move attempting to shift the culture and make it OK to be who you are in a very public way.

I suppose, in principle, it’s possible for someone not connected to the crip community (crip being the used here as the cultural/political identity like “queer” is sometimes also used) to look in the mirror and think they are sexy. Hell, before I was connected to the crip community, I thought it all the time. The point of disability pride isn’t necessarily to validate that judgment, but rather, to make that judgment a public, highly political act of defiance. That is, through individual, private pride in ourselves, we may be able to, for a time, exist in a psychological space of contentment. However, this does not do any work toward changing our culture so that it accepts that judgment as legitimate. By taking pride in your community publicly, a very similar act can be an attempt to shift the public at large toward this broadening of the definition of diversity.

I think an analogy can be made here toward the gay/queer movement. One might say in private “I’m happy with me and my sexual preferences” but it is not until one does this publicly with the words “I’m proud of my way of life that is shared by this community who loves in a similar way to how I love” that the real work of culture shift is done.

So, I guess disability pride serves 2 functions. 1) It creates a group identity that a person can latch on to so they do not exist in isolation, legitimating the judgment that you should love who and how you are. and 2) It puts this group identity on display for public consumption, in the form of a demand for acceptance and culture shift. One person in front of a mirror cannot shatter paradigms. When that one person gets together with others, this kind of change can start to occur.

I don’t think who ever ends up with you will be “unlucky” in any fashion! What it means to love someone is to care about them enough to take joy in supporting them in their journey through life as a partner that sometimes is leaned upon and other times does the leaning. Interdependence, I think is a much more honest and beautiful way of understanding freedom than independence (and I think this is one truth the disability perspective can offer the world, btw).

Of course I am enjoying this! And one point on which we do agree is that attractiveness has everything to do with how one moves about in the world with joy and power. I study disability theory for a living and so sometimes it makes me “see” things or be sensitive to scenarios that are not acknowledged by others, but I like to say that I live in a way that is defiant rather than bitter. Looking forward to talking more!

Andrea September 17 at 12:47pm
Great points, all of them. Have to run off and do some reading for class, but I find everything you’re saying to be very interesting and valuable. Your Point 2 makes a lot of sense about public image — I totally agree. That said, I still like the idea of changing the microcosm around me, one individual at a time. Sometimes the best way to change perceptions is just be around people and let them get to know you. It’s change on a smaller level, but every little bit helps, and every angle of approach supports the others.
Joe September 17 at 1:31pm
I don’t think it’s an either/or, but a both. Your words remind me of one of my heros, Justin Dart. He is widely known as the father of the ADA (http://en.wikipedia.org/wiki/Justin_Dart). One of my favorite Dart quotes that is actually in my fbook profile is: “The notion that any one person is the single cause of any significant social change-that Abraham Lincoln alone freed the slaves-is a devastating stereotype which robs individuals of responsibility and credit, and actually inhibits social change. You can be a revolution of one. In your living room, in your family, in your community.” ~Justin Dart

I think he is talking about the “both” here. To create change, we need to be hooked in to a larger movement that is not made up of any one leader. Yet, at the same, we have to LIVE the revolution of one in our own individual lives. That is, LIVE in a way that rejects the stigmas. I think we are closer ideologically here than you may have presumed.

Jul 20

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...

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.

Mar 10

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

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.

Feb 20

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

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)

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.

Jan 20

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?

Jan 19

In Michigan, it snows in the winter. I knew this when I moved, but didn’t think it could be any worse than CT’s “Nor’easters”. This week, it dropped to negative teens at night (negative 20’s with windchill) and snowed at least a few centimeters every single day. This is all a round about way of saying that I did something kind of rare and took the time to watch a DVD today because I was snowed in at my girlfriend’s apartment. We watched Last King of Scotland, which is hardly a date movie with its very graphic violence. However, we aren’t exactly like many couples and so it fit our tastes.

It is the true story of Ugandan dictator Idi Amin’s brutal regime that caused the deaths of over 300,000 of his own people. One of the striking parts of the story was that these deaths were not a part of a systematic racial cleansing per se, but were the killings of the factions of his political opponents. Amin’s warped psychology justified this violence in the name of stability, because his was one of the first African governments that were completely independent of colonial rule. His was a message of black power, unity, independence, and pride. The unified stability he sought was a response to hundreds of years of racist colonial oppression and exploitation. These ends were not themselves horrifying and could, in fact, be seen as a very good consequence for the people of that nation. After all, independence from colonial power is the same end that our country’s founders were aiming for during the war that created our nation.

Of course, the scope and nature of the violence visited upon his people was outrageous and not at all justifiable by this end. As the movie portrays, many of the killings were the executions of unarmed civilians, not war casualties. Amin was no patriot but a brutal murderer who was drunk with his own power. His absolute commitment to an ends that was not altogether morally bankrupt brought him to the use of means that are among some of the most horrific in history.

Also, Amin is not alone in his brutalities. History is ripe with examples of governments bringing about unthinkable tragedy in these ways. We are often quick to point at the Nazis or the Communists, but even our own government used such logic as it stood alone as the only entity to ever unleash the devastation of a nuclear weapon. Perhaps we may even look to the contemporary torture of terrorism suspects at Gitmo as an example of justifying violence and ignoring basic human rights in the name of a seemingly beneficial ends.

Perhaps I should start using this pattern of thinking as an explanation when I find myself discussing Jerry Lewis and his many offenses. One of the stock responses I get is “i understand why YOU don’t want to be pitied, but he has raised a lot of money to conduct research that will cure people who don’t want to suffer with MD.” Of course, I could and probably should challenge the notion that a medical cure is more desirable than a social one. However, this may be a much harder line of reasoning for someone to follow who has been so deeply socialized to believe that pity is an appropriate and virtuous response to disability. Instead, it may be better to really latch on to the deeply bigoted statements Lewis has made, and point out that the ends of funding for research cannot possibly justify the harms he visits upon the crip community with his very public words and attitudes.

Now, this is not to say that Lewis can be justifiably compared to a murderer like Amin in every way.  Surely, the harm Lewis does can not compare in scope.  Arguably, bigoted attitudes like his lead to the incarceration, abuse, and untimely death of thousands of people with disabilities in nursing homes, institutions, and the like.  Yet, he cannot be held directly responsible as the primary cause of this outrage, because he is a washed up comic, not the head of a government.

However, the means-ends reasoning that people use to defend this hack is quite similar:  “But what does the money go toward?” . . . “Doesn’t the money he raises help children?” . . . etc. etc.   My question is, what ends are good enough that the disability community should be asked to tolerate this man when he says in an article he wrote for Parade magazine that wheelchair users “just have to learn to try to be good at being a half a person?”  What amount of money is worth awarding a humanitarian award to someone who says on national TV, immediately after the passage of the ADA making employment discrimination against crips illegal, that people with disabilities “cannot go into the workplace. There’s nothing they can do?”  He may not be a dictator, but millions of people watch Jerry and are “touched” by his words and cannot understand why we can’t look past his old fashioned views because he has done so much good.  These supposedly good ends cannot be justified by the means of promoting the most basic element of ableism that keeps us as second class citizens almost 2 decades after the passage of ADA, pity.  I couldn’t possibly come up with the words that link pity with our oppression and marginalization better than Jerry did himself in a TV interview in 2001: “Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

Dec 29

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

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

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

My new vanity plate! Crip Power Baby!

My new vanity plate! Crip Power Baby!

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

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

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

Sep 21

Yesterday, NY congressman Chuck Rangel referred to Sarah Palin as “disabled” during a news interview. His point was to highlight Palin’s gross inexperience and inadequacey when it comes to foreign policy. Later, he tried to backpedal and claimed that he meant to say Palin was “disadvantaged” and “is an obviously healthy person who in no way fits the description of disabled.”

I agree with Rangel that Palin isn’t qualified to be vice president and has been tokenized by the Republican party in a not-so-subtle attempt to appeal to the white, suburban, female demographic. What I have a hard time with is the notion that someone who DOES “fit the description of disabled” is somehow unworthy of our respect and lacking authority. Rangel’s comment — and pathetic attempt at retraction — was deeply ableist in that it hinged on the premise that people with disabilities deserve our pity and charity, but not our respect and obedience. We must be “kind” to someone who is disabled, but we should not take them seriously if they are in a position of authority. I would challenge Rangel to share what exactly he means by “the description of disabled.”

Sep 20

I have returned now to the “real world” and am coming down off of the natural high of the ADAPT action. The adrenaline of that 5 days was pretty extraordinary. I heard several stories explaining why and how the arrests went down at Dodd’s office — and several other offices of members of congress, apparently. Rather than relate them here, with the inaccuracies of sleep deprived memory, let me point you to ADAPT’s press releases: http://duhcity.org/duhpress.html. They are all informative, but the first on the list — http://duhcity.org/press/duh004.html — is the most relevant to the action that happened on Tuesday on Capitol Hill.

One thing of note that you won’t find on the press release pages is a description of how I spent my Tuesday night.

DUH City was erected as a political statement of solidarity with folks with disabilities who are, in essence, homeless because of the lack of availability of affordable, accessible, integrated housing. Many folks with disabilities are either homeless in the traditional sense of lacking shelter or homeless in the sense that they do not have a home, but are warehoused in institutions and nursing homes. While such arrangements meet the minimal requirements of permanent shelter from the elements, it is argued that they are not homes because the people living their do not have the security and freedom that is essential to calling something a home. That is, a home is not a place where every moment of your day is controlled by someone else’s regimental routine. So it is that ADAPT tried to call attention to these unacknowledged homeless by living as close to homeless as we could for a few days on the front patio of the US Department of Housing and Urban Development.

ADAPT button with our standard slogan!

In a personal statement of solidarity with people with disabilities who are homeless, I chose to tweak this idea slightly and sleep in a cardboard box on Tuesday night, at the fringes of DUH City. This was intended to be both a political statement, contributing to the overall message of DUH City and an attempt at an exercise in empathy. Since doing this, I have decided these are separable ideas and that I may have succeeded in the one and failed in the other.

As a statement of political solidarity, it probably went mostly unnoticed, but was genuine. However, I don’t think it really worked as a way of building any kind of real personal empathy for those who face this kind of situation as a crisis. As my friend Dominic pointed out in a comment on my post “That could have been me…,” it may be impossible for genuine empathy to be developed between folks who are embedded in systems of drastically disparate power relations. His basic idea was that true empathy — rather than pity — could not exist between able bodied people and folks with a disability because the power differential is too permanent and too absolute for anyone to be capable of truly thinking outside of it.

I am starting to understand Dom’s point here. Like disability, class is a system of power relations. While I can sleep in a cardboard box for a few hours, this will not be a genuine understanding of an impoverished person with a disability’s experience of the world. Firstly, I had a CHOICE of where to sleep. This in itself means that I can not understand the most important aspect of the oppression of poverty and homelessness, power relations. I cannot get outside the fact that I could have gone back to my 200 a night hotel room at any time. How can I understand homeless on anything but the most superficial of levels while retaining this position in society’s power structure? In addition, I had the luxury of a sleeping bag and plenty to eat and plenty of hope for my future. This cannot be a genuine exercise in empathy.

Sep 15

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

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

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

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

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

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

FREE OUR PEOPLE!!!!!!!!

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