Disaboom PhilosopherCrip Blog

Why I Support Barack Obama

PhilosopherCrip — Fri, 29 Feb 2008 23:24:00 GMT

I didn’t support Barack Obama from the beginning of this race. Early on, I had believed Bill Richardson or Dennis Kucinich had the policy stances I agreed with most closely (i.e. far left wing) and that John Edwards had the good looks and demographic appeal to actually win the race, he reminded me of another a relatively moderate, white male from the south who easily won elections to lead us in peaceful, more economically stable times.

However, after seeing Obama’s victory speech after the Iowa caucus, I was drawn to his sincere passion and message of unified progress. He may not have much in common will Bill, but he sure seemed to mirror the style of Jack, an even more moving icon in the history of progressive politics. Since then, I have firmly been in Obama’s camp, following each contest closely and practically using every moment that I am not working or sleeping to read news analysis on the internet. Obama may be leading the race by more than 100 delegates, but he is still clearly the underdog. Despite what national poles say, if Clinton had won more states on super Tuesday and swept 11 primaries/caucuses since, we would barely remember Barack Obama’s name. Just the fact that Hillary is still in the race shows how powerful Obama’s adversary for the nomination is.

He has been accused of being all words and no substance. Of course, this is an accusation offered by those who probably envy his eloquence and his ability to motivate and unify others with his speeches. At the end of the day, all politics is is words. These are words that devide us in fear or unite us around a common cause. They are words that scare people into not trusting those who are different than they are or bring hope for change and a better future. That is, words build political will and political will is exactly what we need if we are going to take this country in a new direction.

Setting this observation aside for a moment, it should also be pointed out that Obama does have substance – i.e. specific policies and plans he promises to promote as president to bring about change. I am not sure how anyone could doubt that after watching the recent debates. But if you do, I would like to point out one specific area in which Obama leaves everyone else behind when it comes to detailed, thoughtful policy positions: disability rights. If you check out the websites of the “final four” contenders for the white house, you will notice that Obama is the ONLY candidate that lists disability policy as a tab on the issues section of his site. It is #2 on the alphabetized list, taking its place as a PRIORITY, right along side of the sexier, more widely noticed issues like the war in iraq, the economy, and healthcare. His disabilities tab includes a video blog (that is accessible to people who are Deaf/HH with captioning) outlining specific policies he would pursue as president to help people with disabilities. Specifically, he promises to ratify the UN Convention on the Rights of Persons with Disabilities, and support key legislation that will liberate people with disabilities and give them a more full range of opportunities in where and how they can study, work, and live (i.e. he gives his support strengthen or pass to IDEA, ADARA, and CCA). A detailed account of his policy plan is available for download as a PDF.

So, the next time someone accuses Obama of being all talk and no substance, ask them if they have heard of the Community Choice Act. If they say they haven’t, tell them how Obama has and how he supports it and other specific and thoughtful policies that will free our people!

The Thin Line Between Pity and Violence

PhilosopherCrip — Fri, 15 Feb 2008 00:00:00 GMT

For a long time, I have been fascinated by the idea of pity. As people with disabilities, it is something that we experience every day. While true empathy is something that this world does not have enough of, pity seems to be something altogether different. In my experience, empathy, the ability to place yourself in someone else’s position, causes a person to want to understand another’s struggle and help them with it. Empathy drives a desire to ask questions about what a person needs and how their life could be improved. Pity, on the other hand, has no element of common understanding. Pity is not in the business of asking questions, but rather imposing answers. Someone who has pity on another seeks to assert themselves in a position of dominance, showing the person who is the object of their pity that they are, and will always be, subjugated.

Until very recently, public policies and social norms dealing with people who have disabilities have been driven by pity rather than empathy. Empathy drives recent reform like the ADA or the Community Choice Act that focus on the liberation of being able to access public space, move around the community freely with good transportation, contribute to the workforce, and live in the community among friends and family.

However, we can be sure that the reaction of pity is still alive and well in the public sphere. It is still pity that drives Jerry Lewis’ Labor Day Telethon where he parades children with Muscular Dystrophy in front of the camera for 24 hours, telling of how horrible their lives are and how badly a cure is needed. Pity is also the source of the billions of dollars spent searching for cures for disabilities through state and federal funding of the human genome project and stem cell research while the pitiful funding that would help people with disabilities live well as they are is under the constant threat of being cut or eliminated.

Of course, as people with disabilities, we also know the first hand experience of pity in our daily lives. When it comes to everything from prospective dates to prospective employers, we know how it feels to have someone pity us. We make them very sad. They feel very bad for us. But, they never would dream of accepting us as their equal. Pity is the very thinly veiled assertion of power. To be pitied is to be told that we are less than. People assert their dominance by vehemently underscoring the difference of the other and establishing themselves as superior. Empathy draws forth the attitude of “I will help you because I could be you,” where pity is the expression of “I will help you because I want to show how I am NOT like you.”

Sometimes that thin veil that hides the true nature of pity is fleetingly lifted and we get an unobstructed view of its ugliness. For example on May 20, 2001, when an interviewer with CBS Sunday Morning suggested that pity may be a harm rather than a good for people with disabilities, Jerry Lewis responded with violent anger, "Pity? [If] you don't want to be pitied because you're a cripple in a wheelchair, stay in ya house!"

Some of the same social attitudes and beliefs that typically get expressed as pity can quickly and easily boil over into violence when someone REALLY wants to feel dominant. There has always been violence toward people with disabilities of one sort or another. Some of it has been institutionalized violence like the Nazi’s T4 program to systematically murder German citizens with disabilities – ironically according to Wikipedia the name T4 was “an abbreviation of “Tiergartenstraße 4”, the address of a villa in the Berlin borough of Tiergarten which was the headquarters of the General Foundation for Welfare and Institutional Care. [emphasis added]” Some of the violence has been more subtle, like the assertion of power that comes when an entire class of people are imprisoned in nursing homes and state run institutions, despite having committed no crime.

The most recent instance of violence against a person with a disability that has everyone talking is that of Brian Sterner, a quad who was dumped from his wheelchair in Florida recently by a police deputy. The deputy “didn’t believe him” when Sterner said two or three times that he was paralyzed and could not stand up to be frisked. The surveillance camera footage that caught the violent episode shows, in the background, other deputies chuckling at Sterner laying on the ground. This incident may seem isolated and outrageous, but hate crimes and other violence against people with disabilities happen pretty regularly. The abuse of people with intellectual disabilities is particularly pervasive and there is reason to believe that it is also underreported.

The bottom line seems to be that we, people with disabilities, are a class that are subjugated to the extent that the socially acceptable response to our situation, pity, seems to be only a hairs breath away from full on violence. I hope that someday we see more empathy and less domination. As an aside, according to a friend who personally knows Sterner, he plays murderball and is in grad school working on a degree in philosophy, so I have particular empathy for him. :)

Revisiting Ashley X: My Struggle as a Philosopher-Activist

PhilosopherCrip — Thu, 24 Jan 2008 20:49:00 GMT

“The reasonable man adapts himself to the world; the unreasonable man persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.” -- George Bernard Shaw

This is the notion at the core of the disability rights movement, isn’t it? The world tries to squeeze human beings in to a box and those of us who fall outside that box are pretty well F*#&ed. People with disabilities fall outside that box in many different ways. Some of us move differently, some of us sense differently, some of us feel differently, and some of us think differently, but at the end of the day it is this difference that binds us to each other. This common understanding of what it is like to live in a world demanding that you conform to its standards and a common urge to resist those forces and demand it is the world that needs to change the shape of its box to include us. The disability rights movement is driven by the “unreasonable man” – and woman!

This idea was brought into sharp relief for me last Friday at a talk in Grand Rapids given by Dr. Douglas Diekema, the doctor that approved the ethical viability of the Ashley X case, and has apparently taken it upon himself to go on some kind of public relations tour to justify his action. For all his hot air about the importance of ethical dialogue and exchange, it was clear that he was trying to sell us something from the fact that he only took 2 brief questions before leaving his podium. It’s possible that perhaps time was limited in the auditorium at Calvin College in Grand Rapids, with nearly 1,000 audience members including those in an overflow room with a camera feed. Yet, I couldn’t help but chuckle when he left the stage after 55 minutes of telling us how important it is for us to be humble and consider the opinions of others when doing bioethics, and maybe 7 minutes of actual discussion. It was beyond disrespectful, it was hilarious.

Moving back to the Shaw quote, the Ashley Treatment is a grim example of what can happen when “reasonable” people decide that others need to adapt to the world rather than the world adapting to them. For those of you not familiar with the case, specifically, the parents of a 6 year old girl with physical and intellectual disabilities successfully petitioned doctors at the Seattle Children’s Hospital to perform a series of procedures that would hopefully make caring for their daughter a bit easier. For instance, they wouldn’t have to deal with her having a period because they removed her uterus, wouldn’t have to someday be reminded that she was an adult woman worthy of dignity and respect because they removed her breasts, and they wouldn’t have to allow community support caregivers to interact with Ashley in their home because they stunted her growth with hormone therapies so she would be easy to “move around.” Surely, there are arguments that attempt to justify these steps as in Ashley’s best interests, but at the end of the day, this was the ultimate rejection of the notion that the world needs to change to accommodate people with disabilities and affirmation of the attitude that we should be FORCED to change and fit in to the world’s view of what we should be, ignisignificant and desexualized.

To tell the full story of last Friday’s events, I first really need to tell about my own internal struggle. When a new friend told me about the talk and an “intervention” she was organizing, I was very hesitant to go. Foolishly, I was even so arrogant as to express some of my apprehensions to her, and am tremendously grateful that her group was so welcoming when I did end up showing up. You see, for a while now I have been struggling with what amounts to something like a split identity. This may be a bit of an exaggeration, in that I don’t have any kind of psychiatric disability and am not REALLY 2 different people. However, I do have 2 very different identities and the 2 very different value systems that go along with them. I can trace both of these identities back to my childhood and they are both parts of me that I have purposely cultivated through a great deal of effort. Mostly, these 2 identities get a long quite well, complimenting each other. However, last Thursday afternoon is a good example of them coming into direct conflict as each “identity” had a very different reaction to the opportunity to be involved with the intervention against Diekema.

At first, I responded as a philosopher. There is no agreed upon definition of what philosophy is, but many people who do it would say that it involves the process of abstracting yourself away from your subject matter as much as you can. It is an attempt to be “objective” or “reasonable.” A major goal – maybe even THE major goal – of philosophy is to establish rationality as the best way to learn about how things are and how things ought to be. Of course, even the most “reasonable” arguments are thick with emotional charges, but it is our project to deny or ignore that as much as possible. We are to be always stoic, always balanced, always objective.

So, as a philosopher, my instinct was to run from, or even condemn the idea of an activist approach to Diekema’s talk. Ethics isn’t about activism it is about truth. It is about pulling yourself back from your position in the world and seeing things as they should be from the rational point of view. Not only do I internalize that value system, but I also have to recognize it as central to my future success. My authority as a philosopher has everything to do with my ability to be seen as objective and rational by my colleagues. If I am seen as an activist when it comes to bioethics, I will not be taken seriously as a thinker. If my goal is to someday change how medical professionals are taught bioethics, I have to create that change slowly by getting the letters after my name and earning the respect of other “powerful” people who can think about these things "rationally." Philosophers in general, including bioethicists, only grant authority to those who work in this way.

My other identity, the activist, immediately latched on to this opportunity as frightfully exciting. I say frightful because I “joke” with my parents all the time about how I am someday going to have to call them for bail because of my involvement in crip activism. The truth is, I am not really joking. Anyone who knows me knows how fired up I get about crip activism. A major part of me can’t wait to get arrested for civil disobedience and non-violent resistance.

Firstly, there are terrible problems in this country regarding how people with disabilities are treated by the system. It is designed in a way that destroys people’s lives and strips them of their humanity. Militant, non-violent resistance can be an indispensible tool in fighting back. Secondly, this type of activism not only works well to get demands met, but also is in itself a form of defiance of our oppression. Acting in a way that is “Feisty and Non-compliant” seriously f@#%s with disability stereotypes that characterize us as passive, weak, saintly, angelic, or inspirational. Good luck calling a group of crips an “inspiration” when a line of chanting power wheelchair users are blocking off all the entrances to your corporate headquarters during an ADAPT action. A major part of me is in love with this idea. My disability community is POWERFUL. We know what is right and how this country needs to wake up, and we are ready to rip you out of your slumber kicking and screaming. We militant, radical crip activists are ready to do whatever it takes, following in the footsteps of those that came before us within our own movement like Justin Dart and Ed Roberts or other civil rights leaders, like Dr. Martin Luther King who we just celebrated earlier this week. This piece of my identity was ready to go. I was ready to cause as much trouble for Dr. Diekema and his ableist ways of thinking as I possibly could. I was ready to speak up about the human rights abuse that has been paraded around the country by this guy as a “treatment.” I was ready get as rowdy as I had to. It was ready to FIGHT.

Ultimately, what happened on Friday spoke to both of my identities. Diekema’s presentation was plenty objective and rational, and I’d like to think the one question I landed about the Ashley treatment being a response to stigma and not medical necessity was philosophically rigorous enough for the venue and delivered in way that was objective and rational. No arrests were made, but I’d like to think that some activism also happened at Calvin College. My co-conspirators were able to hand out hundreds of pamphlets expressing our views to audience members as they passed them on the sidewalk on their way into the building. During the facilitated discussion run by Diekema’s friend and fellow physician Ronald Hofman, we went on the offensive, raising real questions and forcing the conversation in the direction of real criticism of the Ashley case. Our group asked questions about the deeply sexist undertones of this Ashley treatment. We asked questions about Ashley’s long term future and why an irreversable decision was made only looking at the immediate consequences. We asked about a person’s right to bodily integrity. We asked about the limits of parental decision making when it came to medical procedures that are not curing a medical problem. Ultimatley, we asked about why Ashley was mutilated to fit the desires of this ableist world rather than accommodated, supported, and embraced.

I guess I wasn’t cut out to be a truly reasonable man.

Conformity and Unity

PhilosopherCrip — Tue, 15 Jan 2008 07:28:00 GMT

"Do not quench your inspiration and your imagination; do not become the slave of your model." ~Vincent Van Gogh

"I just want to be treated like everyone else." I have heard these words uttered over and over again by people with disabilities. Certainly, I have thought them in the past. They are an expression of our desire for equality. No matter how powerful the laws are that require wheelchair ramps or sign language interpreters, our true desire will remain not to need such laws. We want to be accepted and respected by our culture, not merely tolerated.

For this to happen, we must first accept and respect ourselves. As people with disabilities, we need to find our own voice and our own pride. I have recently heard talk about how Barack Obama is too "white." Perhaps such accusations are built upon harmful stereotypes, but the idea that someone could possibly be too white is interesting to me. I think people with disabilities can learn a lot from it.

Any oppressed group is pressured to conform. Many times, wanting to be treated just like everyone else is easily conflated with a tendency to ACT like everyone else. Stigma and shame at difference is heaped upon us and we are discouraged from associating with people who share our oppression. Group identity for an oppressed category of people is diminished and dismantled by a sense that we have to conform to the standards of our oppressors if we are to be respected.

My first Little People of America national conference was in 1989. I was 7. I had no idea that I was part of an oppressed group and had a great time playing with the other children there. Shame was completely foreign to me. Seven more years passed before I had the opportunity to go back to another national conference. I was 14 and my conformist tendencies were in full swing as a teenager who desperately wanted to "fit in" as I am sure we all did. This was a very different experience. I remember freezing up the first night I went through the door of the nightly dance. Was I really like these people? They looked so STRANGE! How could I possibly be treated just like everyone else if I was part of a group that was so different? My friend Casey was in his late teens or early twenties by that point. He quickly picked up on what was going on and practically dragged me over to a very pretty young lady who was also quietly stewing in a state of shock. She and I didn't have much in common and we didn't end up keeping in touch, but it got me talking.

This was one of the many turning points in my life when I realized that conformity would not win acceptance or respect. Pride is what we need for that. It sounds cheesy, but we need to be able to see ourselves as valuable, as beautiful, just as we are. It is this pride that will draw us together into a force of change. We must defy the stigma that tells us to conform to the standards of a culture that rejects our differences. We must celebrate those differences and from there demand that we are treated just like everyone else, not because we have conformed to their standards, but because we have forced them to redefine those standards. We need prideful unity, not stigmatized conformity.

The Disgusting Ableism of Mike Huckabee

PhilosopherCrip — Wed, 09 Jan 2008 09:04:00 GMT

I try my best to keep an open mind when it comes to politics. To that end, I was recently browsing former Arkansas Governor and Babtist Minister Mike Huckabee's website because he is the candidate that I know least about. I typically buy in to a rather radical brand of progressive politics and so I doubted that I would agree with much of what he had to say, but was curious about how he had won over Iowa Republicans on a fraction of the budget and name recognition wielded by McCain, Romney, and Giuliani. If there is one thing that I respect, it is an upset from an underdog and if there is one thing I am fascinated by, it is effective political strategy.

Most of what I found on the "Issues" portion of Huckabee's website horrified me. The man has issues all right. His immigration policy calls for the common but still blatantly racist "fence" idea. Notice how the war on terror and national security doesn't require us to secure the Canadian border with such extreme measures! He supports the war of Iraq as part of the "War on Terror," which has always been an absurd idea with no link ever being est between Iraq and either "Weapons of Mass Destruction" nor Al Qaeda and the 9-11 bombing. Don't even get me started on that rhetoric. His health care plan condemns universalized health care that would cover the 47 million Americans without insurance (16%), many of whom are employed "working poor" that do not have benefits packages. In fact, he argues that insurance costs employers too much and hinders economic growth and that it should be paid for by individual consumers instead. So much for access to medical treatment being a basic human right.

However, I have strayed far afield from my area of "expertise," that is, disability. What really bugged me about the "issues" of Huckabee's campaign was the final paragraph in his rant about his support of "marriage." I expected it to be homophobic and maybe even sexist, but it was his unapologetic ABLEISM that moved me to write this blog. I quote his words exactly: "My wife Janet and I celebrated our thirty-third wedding anniversary this past May. For us, every anniversary is a miracle. When we were both twenty and married just over a year, when I was in my last semester of college, Janet was diagnosed with cancer of the spine. I can't tell you what a stunning blow it was - two kids just starting out, you don't think something like that could happen when you are so young. Yet there we were, staring death in the face. At first, they told us that even if she lived, she might be paralyzed from the waist down, so I'd be a young man with an invalid wife. After I learned she wouldn't be paralyzed, I was told that because of the radiation she received following surgery, we'd probably never have children... If Janet were in a were in a wheelchair today, if we'd never have children, I can tell you this - she'd still be my wife."

In relating his TOUCHING personal story that is supposed to show his strength of moral character and deep commitment to the sacred institution of marriage -- something that homo loving former governor of MA surely doesn't have with his funny religion, Huckabee sends an unintended but earsplittingly raucous message: people with disabilities are of lesser value. Not only does he characterize wheelchair users with the quaintly oppressive and hateful word "invalid," but he also heavily implies that using a wheelchair would have made his wife less desirable as a marriage partner! Sure, he is a good guy and he ASSURES us that he would have stuck by his invalid wife's side because he loves her so very much, but it would have apparently been something that would have made good ol' Mike worthy of sainthood because everyone knows that no one wants "an ivalid wife." Can't you see the F$%*er's hallow glaring off his shiny bald head?

This is not something he said in passing, but something he posted on his website as an official stance. Please, show your friends and family and help spread the word. We need to send a clear message as the primaries continue that America has no use for such a hateful, backward thinking man.

The Limits of an Absolute Commitment to the Social Model

PhilosopherCrip — Sat, 05 Jan 2008 07:50:00 GMT

“I think we ought always to entertain our opinions with some measure of doubt. I shouldn't wish people dogmatically to believe any philosophy, not even mine.” ~Bertrand Russell

When I grab on to an exciting idea, it’s often hard for me to let go. However, I pride myself on being open minded to the point that I actually enjoy losing arguments. I don’t always have time to fully flesh out or defend the ideas that I describe with my disaboom posts, but I can say that the most I have ever really learned has been from losing hard fought philosophical and political arguments with friends and teachers. I am talking about the kinds of arguments that go one for hours, days, weeks, months, or even years. What this all has taught me is that you shouldn’t just haphazardly give up your beliefs or be wishy-washy in your opinions, but you should be always open to the idea that you could be wrong about anything you think is true. History has shown us again and again how a blind, absolutist commitment to an idea is silly at best and deadly at worst. We are often wrong about how things work in both nature and politics. Lightning is “an atmospheric discharge of energy” not an expression of a god’s wrath. The world is round and orbits the sun. One race or class or gender doesn’t have the right to rule over the others. Absolutist thinking of any kind is dangerous.

The wisdom of Bertrand Russell should be taken to heart by the disability rights movement. I think we can be in danger of surrounding ourselves with only those people who think like we do, elevating what used to be excitingly innovative thinking to the status of absolutist dogma. I think that the social model of disability runs this risk, especially in discussions of bioethics.

The social model of disability tells us that the nature of disability is social rather than medical. That is, what is disabling about a person’s difference are the norms, attitudes, and expectations of society. These norms are expressed in how society is constructed, putting people who deviate from these standards at a disadvantage, effectively disabling the minority of folks whose bodies and minds work differently. An essay I recently co-authored with Alice Dreger expresses this idea with, “stairs and written language don’t occur in nature anymore than wheelchair ramps and Braille do.”

The social model of disability is the theoretical bedrock of the disability rights movement. It allows us to stop seeing the harms of disability as a tragic parts of nature that can’t be avoided. Instead, we see these same harms as tragic parts of society that can be reshaped in more liberating ways. The social model of disability is the theory that tells us that the ADA’s “reasonable accommodations” are even possible. Crips of my generation owe our lives to the revolutionary ideas of the social model of disability, and this is not something to be taken lightly.

The social model can also inform bioethical thought in new, important ways. It can act as a warning against an overzealousness in genetically testing and selectively aborting fetuses with disabilities, pointing out the injustice of characterizing the harm of disability as biological rather than social and drawing analogies to gender as Dreger and I did. The social model can also buttress arguments against painful or risky medical interventions meant to remove a disability, like elective limb lengthening surgery as a “treatment” for dwarfism or the cochlear implants that are so controversial in the deaf community.

The social model of disability is also closely linked to the idea of crip pride. It calls us to reject the idea that disabilities are medicalized evils, but differences that become harmful because of the way society is set up. It is hard to imagine the possibility of radical crip pride with only the medical model as grounding. If disability is an inherent harm that we should cure with medical science, it is complete nonsense to be proud of it. However, once we think of disability as a more neutral trait like gender or skin color, which becomes a harm because of society’s reaction to it, we have an opportunity to take pride in that difference.

Much of the disability rights movement has been aimed at pointing out the social nature of disabilities. As we move from the rhetoric of pity and cure to liberation and social inclusion, we see the concrete move from the nursing home and institution to the community with friends and family. It is thought that medicalizing disability by trying to prevent or cure it is a direct rejection of the social model. Massive amounts of public support for things like the Human Genome Project and the resulting genetic screening and selective abortion of people with disabilities seems to be a statement of “we don’t want any more broken ones,” denying that maybe it is society that should be shaped to fit the variety of people rather than controlling what types of people make up society. The cures promised by stem cell research and the massive amount of both public and private funding that has been dumped into it are also sometimes seen as driven by a medicalization of disability. The desire to cure disabilities like sci and tbi drive the politics that pass multi-million dollar research bills in states across the country. Again, this desire can be seen as a rejection of the social model that tells us that the harm of disability is in the fact that it is stigmatized and rejected as an acceptable way of life. The pity that drives the cure mentality is directly opposed to the idea of radical crip pride.

It seems like stem cell research will soon be able to march forward without offending the sensibilities of the religious right because pluripotent cells have been derived without the destruction of embryos. This leaves the disability rights critique of the medical cure mentality out in the cold. That is, if the controversial embryos are no longer in danger of destruction, the only argument left will be that stem cell research – along with the rest of the spectrum of cure attempts – is inherently ableist because it rejects the social model of disability. This argument is complicated and goes directly against the intuitions of most Americans who were raised in a culture of fear and pity toward disability. It almost certainly will not hold up in the public square.

I am becoming less convinced that this logic SHOULD hold up in our decision making process. To be sure, the social model is a powerful tool for change, but does it tell the entire story? Isn’t this where Bertrand Russell’s advice should come in to play? It seems to me that there are some cases where the medical/biological harms of a disability or disease are real and not socially contingent. Surely, there is much work still needed before we have mitigated all the harms that are socially constructed (equal access to employment, housing, education, etc.) and a purely medicalized view of disability threatens this process. Yet, can we really take the possibility of cure off the table as a viable means of ending suffering in all cases? Do we honestly think that the polio vaccine was a part of the genocide of our people?

I am generally against the genetic screening of embryos with selective abortion or selective implantation through IVF because of my deep commitment to the social model. However, I can not tell the potential parents of an infant with double dominant dwarfism – when a fetus inherits a dominant dwarfism gene from both parents, it only survives through extraordinary intervention and no one has ever lived past the age of 3 – that they should not use biotechnology to avoid such a birth because it promotes the medicalization of disabilities. The fact is, some disabilities are objectively medically worse and cause more suffering than others and this has nothing to do with social facts and everything to do with biological ones.

Maybe people with spinal chord injuries can live very well as they are and a better policy is to promote pride and full access to all out society has to offer, but the promise of stem cell research to cure something like Alzheimer’s cannot be ignored. Anyone that has watched a loved one fall into dementia knows that the resulting harms cannot be described in the terms of the social model. This is a medically bad disease destroys a person’s life and compassion drives us to cure it because it cannot be mitigated with only social fixes.

The problem with rejecting absolutism is that it leaves us with some truly tricky philosophical questions. In this case, we must bite the bullet of: How do we decide which disabilities are objectively worse than others without throwing the baby of the social model and disability rights progress out with the bathwater? In other words, how can we know which disabilities should be avoided or cured and which should be embraced as part of the fabric of human diversity?

The Double Bind of a Professional Activist

PhilosopherCrip — Mon, 24 Dec 2007 17:39:00 GMT

“You can only become truly accomplished at something you love. Don't make money your goal. Instead, pursue the things you love doing, and then do them so well that people can't take their eyes off you.” ~Maya Angelou

A recent conversation with a friend got me thinking about the crip community and times when an individual’s interest comes into conflict with the interests of the group. This seems to happen pretty often in a general way, but I have been lately thinking about it in terms of the disability rights movement’s leadership hierarchy.

Particularly, I have been thinking about it in terms of getting public recognition or credit for projects I have worked hard on. I am not at all a one man show. Even my writing, which is the personal, individualistic thing I do, usually comes from “percolating” dialogue I have had with others. Ideas don’t occur in a vacuum, whether they result in a blog post, scholarly article, position statement, or conference presentation. So, how can I be greedy for a public recognition of these ideas or this work as my “own.” Sure, I may put some work into fleshing out, organizing, or prettying up the language of a set of ideas, but I am starting to think that truly original ideas are few and far between. Still, I sometimes find myself wanting recognition as a new leader in our community when it comes to bioethics. When I had the chance to meet a very well known disability scholar and health law professor this summer, Paul Miller, I almost passed out from excitement when he recognized my name as “that kid who does bioethics.”

It seems horrendously destructive to the disability rights movement and the community to be possessive of ideas or topics. The movement is supposed to be about crips empowering each other. It is about everyone being a leader or a “revolution of one.” How can I be possessive of ideas that support or promote the empowerment of others?

Historically, people with disabilities have had no voice in how they were treated by society. We were locked away in institutions, literally imprisoned and stripped of our human rights. Voting venues were inaccessible and the power of education was something kept out of our hands. The disability rights movement has begun a sea change for our people. Ableism is still alive and well in American society, but there is no doubt that progress has been made in some very concrete ways. The core value of this progress is individual empowerment. In fact, the success of this progress is defined and measured by its success in giving individual people with disabilities the power to determine where and how they live their lives.

To be sure, bioethics is a complex array of topics. But then, so are housing, transportation, education, employment, and the rest of the laundry list of traditional topics in disability rights activist’s portfolio. It is our duty as activists to empower everyone. We must take everyone’s opinions and desires about these issues seriously and treat everyone as “experts” with something important to add to the conversation about the changes that need to be made in how things are set up. This is disability rights activism. So, trying to lay claim to a narrow set of topics as my territory and trying to promote myself as a leader in this area is foolishly paradoxical at best and oppressively unjust at worst.

With this said, if this is how I am going to make my living, do I really have a choice? We live in a capitalist society. This means that an ethos of competition carries the day when it comes to dollars and cents. When disability activism crosses the line between a personal interest to become how a person puts food on her table and pays his rent, do we have a choice about whether we promote ourselves as leaders rather than trying to empower others? This, of course, is a rhetorical question aimed at pointing out the double bind we professional activists find ourselves in.

So, what do we do? I don’t think I have an answer. We can’t exactly forbid all but the independently wealthy to devote themselves completely to activism. We have enough work to do without trying to completely change the America’s economic system. Pay, as meager as it may be, will always be a part of crip activism. Unfortunately, so will self promotion.

FDR: the Super Crip or the Traitor?

PhilosopherCrip — Sun, 16 Dec 2007 22:52:00 GMT

"We must scrupulously guard the civil rights and civil liberties of all citizens, whatever their background. We must remember that any oppression, any injustice, any hatred is a wedge designed to attack our civilization."
-- President Franklin Delano Roosevelt

How much is actually known about FDR's disability? It is no coincidence that a google image search shows him as seated in virtually every presidential picture. I have seen pictures of him using a wheelchair because of post polio syndrome but haven't ever seen any biographies that detail how it affected his everyday life and his rightly celebrated presidency. It seems to me that this has everything to do with the stigma that surrounds the disability identity. FDR couldn't acknowledge this part of himself publically because of the impact it would have on his electability in a culture that sees disability as a something to feared and pitied. Modern history books typically don't highlight this aspect of his identity, ignoring it as much as he did himself and giving it a footnote at most. Anyone who lives with a disability knows how much it impacts our daily life. It is the lens through which we experience the world from the moment we wake to the moment we sleep. It is not an insignificant, peripheral part of our identity.

Although I haven't done any extensive literature reviews on the subject, anecdotally it seems to me that whenever FDR's disability is mentioned in a historical context it is framed as something he "overcame." It would be deeply offensive to characterize JFK's minority status as an Irish Catholic as something he struggled to overcome and rise above to become president. This kind of characterization is drenched in the thick stench of ableism. If we were to have a President that shared some type of other minority status with a historically oppressed group, he/she would quickly attain the status of an icon in that community. I am sure that many feminists would rejoice if Hillary manages to get elected and I think many people of color would have hope about the future of race relations in the U.S. if Obama was chosen to lead our country. As an Italian American, I'd have a certain amount of pride to see Rudy win, even if I disagree with almost every policy he would be likely to put forth. So, why is it that FDR isn't usually mentioned as a crip hero? I have heard that he tried to hide his disability and it's likely that this "denial" has something to do with why we don't celebrate him as a hero of our community. After all, how can we celebrate someone who denied that he was one of us?

However, I wonder if it would be possible to research how FDR saw his disability? Surely, even if he thought of it as something he needed to hide from the voting public, he may have other private feelings about this piece of who he was. I am no historian, but I imagine a biography of FDR as a man with a disability would be fascinating and important. Does it exist and, if not, why not? FDR was a truly great man who had a brilliant mind for politics and a deep love of his American people. I think it would be nice to know more about him as a great man with a disability.

Common Struggle

PhilosopherCrip — Fri, 14 Dec 2007 22:25:00 GMT

[Author’s Note: I survived my term paper writing and can now write for fun again! Sorry I have been so MIA!]

"Injustice anywhere is a threat to justice everywhere." ~Martin Luther King Jr., Letter from Birmingham Jail, April 16, 1963

I first saw that slogan on a banner at a disability rights march 2 summers ago in Washington D.C. I think these words are powerful, and speak to the interconnectivity of morality. We can live good lives in isolation while still condoning social or political systems that marginalize and oppress others. Living what we think is a moral personal life is important, but we must also strive to create a public space that helps everyone flourish. That is, our sense of obligation cannot end with our personal interactions and our desire to be nice to others. The quality of our society is also our responsibility. If it is just and promotes fairness and freedom, we can take some of the credit. However, if it organized in a way that oppresses others, we must take some of the blame.

A great film called Amazing Grace brought this idea home to me recently. It was a movie about how a VERY wealthy man from England’s elite merchant class, William Wilberforce, sacrificed his reputation and even his health to struggle against the trans-Atlantic slave trade. He recognized that he had the power and responsibility to change a deeply rooted and evil system of social oppression. Even though he wasn’t directly causing the slave trade to happen with his personal actions, he saw that he was living in a profoundly unjust society and made it his mission to change it.

Another example of someone seeing that one person’s suffering is everyone’s suffering is the activism of my friend Haley, who has been doggedly trying to get my alma mater include wheelchair access in its major renovations, despite the fact that Haley has hearing loss and is not a wheelchair user herself. She has taken up this cause because she sees her larger responsibility to the oppressive structure of things.

This is an important topic within the disability rights community. We have used this interconnectivity as our battle cry, calling upon other folks who don’t identify as crips to see our struggle for what it is: a form of social oppression. However, I don’t think we have done enough to really internalize Martin Luther King’s words like Justin Dart would want us to. Have we done enough to make sure that ALL people are represented in the disability movement and culture? Do people with intellectual or psychiatric or communication disabilities have the same access to leadership roles and decision making processes as people with physical disabilities that have traditionally lead the movement?

Moreover, are people who are multiply oppressed with a disability and another type of minority status empowered by the movement and allowed to fully embrace its promise? That is, are women, people from cultural/racial minority groups, people with less socio-economic power, elderly people, young people, non-Christians, or people with non-traditional sexualities given a voice in our movement so that the unique concerns they raise are considered a priority? Or are the concerns and the vision of the disability rights movement narrowed to those of the white, upper-middle class, middle aged male?

Finally, how much have we done to reach out to other movements and recognize their injustices? Have we made links with groups that fight other types of prejudices? Are we open to the idea that our struggle against ableism is intimately bound up with similar struggles against racism, sexism, homophobia, and the rest of the laundry list of oppressions our society heaps upon those people who don’t quite fit its picture of normalcy? Have we joined their struggle to end these oppressions?

I believe we can do better. I believe that we MUST do better.

why i'm thankful

PhilosopherCrip — Thu, 22 Nov 2007 05:43:00 GMT

“Remember, with great power comes great responsibility.” ~Ben Parker

I have a lot to be thankful for. I have always known I have a great family and I’d like to think I have always appreciated them, but being so far from home, I take them for granted less and love them even more now. We are a very tight knit pack. Until August, I lived the farthest of my 4 siblings from my parents’ house and was only 40 minutes away. Now it is an 80 minute flight or 14 hour drive between me and my “pack.” I use this metaphor, not to signify that we are vicious predators that coordinate our attacks, but to think creatively about the interdependence of our family unit. That is, we take care of each other. We all have a range of talents and abilities, but, at the end of the day we know that we do not face this world alone and can always call on the others to come to us in times of need. Whether the problem is a crashed computer, clogged toilet, or troublesome co-worker, we are there for each other. I know not everyone has that and I am really, truly grateful for it.

This morning, my mom was talking to one of my activist friends, who casually mentioned institutionalization as a historic evil. My mom looked her in the eye and told her how, when I was born, the attending physician strongly urged her to hand me over to a state institution, because I would be a burden. Obviously, my parents fiercely rejected that suggestion – another reason I am grateful. My pack took me in and raised me like any other cub, so that I know when to ask for help and know when to give it when asked.

For the past few years, I have been thinking about how my life could have been different. I could have been born into a family with less courage and ability to defy the “advice” of the “professionals.” Maybe a different family wouldn’t have had the understanding of love and interdependence that would move them to take me home from the hospital. More likely, maybe another family wouldn’t have had the material resources to give them the confidence that they could raise me better than a government institution.

My life is not my own. It was given to me by circumstance. Call it random luck or call it fate or call it God, but I could have had a completely different set of circumstances that would not have positioned me where I am. I am aware of my oppression as a person with a disability, but I am also aware of my privilege as a well educated, middle class, white male. This awareness, this knowledge of my strength moves me to believe that I also have a responsibility. I understand the world as a system of interdependence and that I happen to be positioned in this system in way that I have a power and, therefore, a responsibility to empower others within this system.

I am thankful to my family. They taught me to have imagination and vision for a better world. They taught me to be strong. They taught me how to use charm and negotiate. They taught me how to take my gloves off and fight when I need to. They have taught me how to decide well. They taught me how to care for others. They taught me to be thankful.

Thankfulness cannot be isolated to the third Thursday in November. True thankfulness moves you every moment of every day.

choosing to create life: suffering, reproduction, and oppression

PhilosopherCrip — Sat, 17 Nov 2007 17:24:00 GMT

[note: I have been really busy with the end of semester “crunch” and haven’t posted in a while, so I thought I “owed” my fellow disaboomers a longer, more detailed post than is typical!]

“The truth that many people never understand, until it is too late, is that the more you try to avoid suffering the more you suffer because smaller and more insignificant things begin to torture you in proportion to your fear of being hurt.” ~Thomas Merton

These words were written by a Catholic monk, but I suspect they would resonate well with a Buddhist, protestant, agnostic, or anyone else. I think it is a good way of seeing the world. I am not one to put much stock in metaphysical claims about “redemptive suffering” cleansing your soul on earth in preparation for an afterlife, but I can see the logic in the idea that the amount a person suffers is often controlled by that person.

Certainly, a person’s suffering can be and usually is caused by circumstance. A flat tire on the highway can ruin a person’s morning commute and a tyrannical government can transform a life into a constant state of fear and anguish. However, much of our experience has to do with what we bring to it. Suffering is part of the human condition and, as Merton suggests, accepting this may be the only way to deal with it, as avoidance is torturously futile.

While this seems like a good way for a person to live their own life, it still seems that we have a responsibility to actively reduce the suffering of others. It is one thing to accept your own suffering as unavoidable, but it is quite another to cause others to suffer through action or inaction because “that’s the way the world is.”

Wednesday night, in class, it was suggested that it is irresponsible and maybe even immoral for certain people to have children if they know said children will suffer. This is a claim that I have heard before and it is usually leveled at people with disabilities. “How could you knowingly cripple your child?” it is asked of the blind, Deaf, or dwarf couple who is trying to have a child that will likely share their disability. My reaction has always been defensive. I am quick to point out that the SOURCE of suffering is mostly social/political for people with disabilities. Our suffering is not from a medical ailment but from oppressive attitudes about everything from employment to sex and how we “fit” society – or, rather, misfit. Disability isn’t defined by deformed limbs created by flawed DNA – or a severed spinal cord from a car accident – but by deformed social structures created by flawed attitudes. It is not that we are ill equipped to handle how things are set up, but that things are set up in ways that exclude us.

That is the crip party line that I have supported in my writing, speaking and action. However, Wednesday night’s class made me reconsider this. It was suggested by one of the sharpest and most articulate of my fellow students that it should be open to question whether it could be wrong to create a life that we know will involve great suffering, irregardless of the source of that suffering. I was taken aback by this opinion, because this gentleman has worked closely with a very well known bioethicist who herself has a disability and has devoted her career to pointing out how biology is often mistakenly blamed for suffering rather than society. It was because of this guy’s background that I paused to actually listen to his arguments.

His central claim was that the source or cause of suffering may be important to an activist trying to bring about change, but it is the suffering itself that is still very real to the child that experiences it. It may be true that the suffering of disability is caused by a deeply oppressive social structure, but it is still true that the lived experience of disability is extremely difficult. He offered an analogy to the Holocaust. Nearly everyone recognizes the paradigmatically evil oppression of the Holocaust. No one with a shred of decency would claim that the suffering of the concentration camps was a “natural” evil. It was created by other humans and, moreover, was completely deliberate. However, the cause of the suffering is not reason to ignore that it was very real. Perhaps the terror of Nazi rule was enough to even justify the thought that Jews and others who KNEW their offspring would suffer should do everything possible not to have children.

By analogy, we can then transfer this thought into the case of people with disabilities. Even if we understand that our suffering is unjust and unnatural – that is, caused by a system that could and should be otherwise – does it follow that we should DEMAND that others are subjected to this suffering by passing traits on to children that we know will suffer? I haven’t worked it all out in my head yet, but I think there are some flaws in his analogy that need to be highlighted.

Firstly, no person with a disability suffers as greatly as holocaust victims did and to suggest this disrespects holocaust victims and exaggerates the suffering of disability. This exaggeration is itself dangerous because it reinforces fear of disability, which is one of the major ingredients of our oppression. I will let this objection rest because he was not using the holocaust as a perfect analogy of the nature of suffering, but as an exaggerated case of severe suffering that was meant to prove his larger point.

Another way in which the case of the holocaust exaggerates the case of disability and therefore does not map on well to it is the way in which the suffering of holocaust victims is understood to be obviously socially constructed. What, at first, seems to be a strength of the analogy is really a weakness. Anti-semitism is a deeply entrenched evil with a long history, but the warped logic of the holocaust was not that Jews (and other groups oppressed by Hitler’s Germany) suffered inherently and naturally. The evil of the holocaust was justified in different morally disgusting ways, but it was never veiled under the guise of “natural” suffering. The societies that witnessed the holocaust and the one that perpetrated it always acknowledged that it was a large scale action of human beings and not an accident of nature.

This is an important distinction because, while a select group of activists understand and attempt to expose disability as a social harm and matter of oppression, most people see the suffering of disability as medical or biological or “natural.” While the majority clings to this ignorance of what causes disability, my classmate’s analogy to the holocaust will not hold up. The suffering of the concentration camp prisoner was many times more horrific than the suffering of a typical person with a disability, but he had the understanding that it was a society that was oppressing him and so if he survived the suffering would be likely be temporary. That is, a person living through the holocaust could say “I choose not to have children NOW because of these nightmarish conditions.” However, a person with a disability has much less ability to see their suffering as temporary because our society is so permeated with the flawed assumption that the suffering has to do with DNA rather than social arrangements, so the choice would likely have to be “I choose not to have children EVER because of these nightmarish conditions.”

Finally, it should be pointed out that reproductive subjugation is a major type or piece of the oppression of people with disabilities. People with disabilities are often seen as abnormal and asexual, lacking the desire or capacity to reproduce. The very act of reproduction is a human joy that we have historically been denied by both explicit policies and oppressive culture stereotypes, both removing us from the pool of people that are “ought” to reproduce. Unlike holocaust victims, the act of reproduction is an act of defiance and protest for the person with a disability. In fact, reproducing may be the ONLY act that can do any work toward dismantling this strand of oppression. So, it is not that a person with a disability should avoid having children to avoid creating new suffering, but rather that a person with a disability should have children as a means to end a type of suffering. It may seem strange or even repugnant to use the birth of a child in this way. I would agree that it would be wrong to offer this as your only reason for having a child, or even your primary reason. However, if having a baby is something you want to do as a person with a genetic disability for other good reasons, it seems that this is a good way of justifying the action against objections like the holocaust analogy.

Here I come to save the day...

PhilosopherCrip — Mon, 05 Nov 2007 06:13:00 GMT

"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

For a while now, I have been trying to wrap my head around what it MEANS to be a “revolution of one.” Does JD’s call to action ask that an activist be constantly “on?” Over the past 2 or 3 years I have slowly had my awareness raised to the point where I see ableism everywhere I go. The systemic oppression of people with disabilities is so built in to our culture that in surrounds us like the air we breathe. Ableism is not just in a job interview or in a doctor’s office, it is in our living room. JD is telling us here that we have to bring the fight to the world, but do we have to do it every minute of every day? Is it always right to react when we see it or hear it, or do we pick our battles prudently?

I have a hard time parsing this out sometimes. In some cases, it seems like I am being overly sensitive and coming off as the “bitter cripple,” doing more harm than good. But in other contexts, I fear I have been silent when it would have been better to speak up.

Some scenarios are obvious. Educating my sister that the word “handicapped” is oppressive because it is derived from the phrase “cap in hand” – an extremely disempowering stereotype of the begging cripple – is probably a clear case of when my living room revolution was spot-on in its targeting. Likewise, when I was on a recent blind date of sorts and the otherwise well informed and politically savvy woman I was having coffee with dropped the word “lame” in a pejorative way several times (e.g. that sweater is so lame), it was probably prudent of me not to offer a lecture about how that word shouldn’t be used in that context because of the meaning it has for people with disabilities – much like using the word “gay” as your generic negative descriptor offends homosexuals.

Aren’t there lots of situations that are in the gray area in between though? Don’t we find ourselves in a situation where we “kind of” know someone well enough to speak up in a situation that is “almost” offensive enough to warrant action? What do we do then? How do we decide when to put on our cape and tights and fight ableism right then and there?

Sarcasm, Charity, and Power

PhilosopherCrip — Thu, 25 Oct 2007 09:16:00 GMT

“A bone to the dog is not charity. Charity is the bone shared with the dog, when you are just as hungry as the dog.” ~Jack London

I had the strangest experience today. I have had many detailed conversations with friends about the different “models” of disability. There is the medical model that tells us that disability is a biological harm or abnormality that should be fixed, there is the much more favored social model that tells us that the harm of disability is social and the way to mitigate is through political action, and there is the cultural model that sees disability as a culture or way of life unto itself that should be celebrated with defiant pride. Today, sitting in the East Lansing McDonald’s (it’s a hulking, 2 story 24 hour deal covered in MSU colors and symbols, quite impressive) I had a very strange run in with what is known as the charity model. I had just finished my lunch, and was starting to pull my hoodie over my head and venture out into the crisp Michigan autumn, when the male member of an older couple that had been not-so-subtly staring at me the entire time decided to strike up a conversation. It went something like this:

Old Man (OM): “Hey, you need help with that?”

Joe: *thinks: “oh yes, I brought this hoodie all the way across town to McDonalds in the hope that some old guy would help me get it on” *says: “no thanks, I’ve got it under control.”*

OM: “It sure is cold out there, you should have a heavier coat.”

Joe: *thinks: “You’re cold because you are weak and your skin is thinning, old man. I’m gonna go beat my chest and eat some bacon and watch some rugby.” *says: “It’s not bad yet, but it will be soon.”

OM: “Ha! You should move down south where it’s warm.”

Joe: *thinks: “I think you are confused. You are the one that is looking into retirement communities.” *says: “I’m used to the cool weather, I grew up in Connecticut.”

OM: “Are you an MSU student?”

Joe: *thinks: “Nope, I am carrying these books around campus for the exercise, I eat McDonald’s every day and need a way to burn calories.” *says: “Yeah, I study philosophy.”

Old Woman (OW): “I went to MSU and so did my brothers.”

Joe: *thinks: “You and 88% of the population of Michigan.” *says: “cool.”

OM: “So who gave you that cart? Did the government give it to you?” (referring to my motorized wheelchair)

Joe: *thinks: “I made it out of twigs and twine and chewing gum. I am a gnome. We are mechanical geniuses.” *says: “health insurance.”

OM: “MSU is expensive. What about that? Who is paying for that?”

Joe: *thinks: “Look you old (expletive), if you are so eager for me to take a had-out, how about if I meet you here every day and you can pay for my value meal.” *says: “I’m on scholarship.”

OW: “What about housing, who pays for that?”

Joe: *thinks: “Why? Do you have an extra room? You can make me fish sticks for dinner and then we can get drunk on schnapps and watch Wheel of Fortune.” *says: “It’s a very good scholarship. I need to get to the library. It was nice meeting you both.”

OM: “Do you need help with the door?”

Joe: *thinks: “I’m Yoda’s 3^rd cousin. I’ll just use the force.” *says: “Thanks, but I’m set.”

All kidding aside, why is it that some people have an almost aggressive NEED for crips to be the subject of charity?! I have had government help before in various forms that has “leveled the playing field” a bit for me, but this guy thought I should need help with everything from the beginning to the end of conversation. At times, he almost seemed personally offended that I was independent and unstereotypical!

I don’t mean to spurn the good will of the kind, empathetic, compassionate people that I come across every day. However, some people respond with overzealous charity because they have a need to assert their power and superiority over me. It makes them feel powerful to “help those less fortunate.” It’s like they need to throw me a bone to keep me in my place as a dog.

something more personal

PhilosopherCrip — Tue, 23 Oct 2007 06:45:00 GMT

Taking brbroadw's lead, I am posting the meme she made about reading preferences. She explains in greater detail: "A meme, as you probably already know, is a set of questions for bloggers to answer in order to get acquainted with other bloggers. I'll post my answers here. If you decide to join in the fun, leave a comment for me to tell me you are participating, then copy the questions into your own blog and entertain us all with your own creative responses."

I have taken the liberty of adding a few questions as well. Hope she doesn't mind!

What are some of the first books you remember truly enjoying?

My parents and older sisters read to me as far back as I can remember. Books were Christmas and birthday presents long before I myself learned to read. Dr. Doolittle and books by Rhold Dahl were my favorites. The first novel I read was called The Boxcar Children. It was about a group of homeless orphan kids that took care of each other and solved mysteries. I got it out of the grammar school library (circa 1989) and spent the rest of the day reading it. I thought I was "hiding" it in my desk as I completely ignored my teacher that afternoon in favor of the boxcar children, but she obviously new what was going on and let it go. I kept reading when I got home and had it finished before dinner was served. The rest is history.

In general, what type of books do you like to read?

The best I can do here is offer some patterns or chronological trends in my choices. My disability kept me from being involved with sports and my parents refused to buy me a nintendo, so virtually all of my childhood and much of my teen-aged free time was spent reading. As a young a child I read a lot of serialized books. This started with The Boxcar Children but quickly evolved through The Hardy Boys, The Chronicles of Narnia, The Chronicles of Prydain, Redwall, Dragonlance, Star Wars, and others I must be forgetting. My teen-aged years were steeped in science fiction and fantasy. I worked hard in high school, but still had lots of energy left to swallow books whole. Stephen King, Orson Scott Card, George R.R. Martin, Henry Turtledove, L.E. Modesitt Jr., and Robert Jordan were some of my sci-fi/fantasy favorite authors at that point. I held on to some of these authors into adulthood on the rare ocassions that I can read just for fun. In undergrad, I did what amounted to a minor in Euro Civ and read a LOT of European literature, history, philosophy, and theology. Most of my time is now is spent reading technical , academic philosophy. When I do have a chance to read outside of the ivory tower, i either revisit my past with some sci-fi/fantasy indulgence or it is somehow related to disability studies or the history of philosophy.

What adaptive equipment/services if any do you use to read?

The only thing I use to read is large amounts of coffee.

What is your favorite book about disability culture or featuring a person with a disability?

My parents gave me several books about being a dwarf when I was child that were recommended by LPA. The first book I read about the disability experience for school was the autobiography of the Irish poet Christie Brown, who had CP. I HIGHLY recommend that for any adolescents with disabilities. Fantasy lit is peppered with characters that have dwarfism of course, but the Song of Ice and Fire series by George R.R. Martin has a REAL dwarf character in it (with average height parents and siblings, not part of a different race of beings that horde jewels and make armor). I think that central character is one of the main reasons I immediately drop everything to read Martin's new books when they arrive at the store. In my world, they have "Harry Potter Status."

Did any book ever change how you viewed yourself as a person with a disability?

The first book that really helped me first understand disability as a fundamentally social harm rather than a medical harm was Robert Murphy's self Ethnography The Body Silent. This is a self told story of a brilliant medical anthropologist working at Columbia University who goes from traveling to South America to understand how disease is seen in Latino cultures to traveling the streets of his own New York City to understand how he has seen by mainstream American culture as a person with a disability. It is a fascinating book because it records how people slowly begin to treat him differently as he slowly becomes disabled because of an inoperable tumor growing on his spine that eventually makes him a quad -- and eventually kills him. The sensitivity of his observations and the sophistication of his explanations are way better than anything I have seen describing the deeply social nature of the disability experience.

Why we must keep asking IF.

PhilosopherCrip — Mon, 22 Oct 2007 06:18:00 GMT

[Note: this entry is part of a larger Disability Blog Carnival that can be found at my good friend and fellow disaboomer Kara’s website: http://www.karasheridan.com/ starting on October 25, 2007, so check it out! Also, you will notice I have more links than usual in this post. I am trying to highlight all of the many different ways in which activists are working to tear down ableism with most of these, so CLICK ON THEM!]

“Imagination is more important than knowledge.” -- Albert Einstein

Training in philosophy often boils down to guided practice with what many people think of as “critical thinking.” Critical thinking usually means that a philosopher analyzes ideas and arguments with skepticism, asking questions about the various logical steps and trying to expose weaknesses in those steps or the ideas they were built upon. To the philosopher, the questions “why?” and “how?” are often the most important.

However, to an activist, I think the question “IF?” is most central. Sure, there are more practical concerns that we need to address during our everyday work, but an ability to ask the IF question keeps the fire in our bellies. Martin Luther King’s “I Have a Dream” speech is the quintessential expression of the IF question. It is the most beautiful, clearly conceived asking of what the world would be like IF oppression did not exist. Every activist needs to be able to ask this question. Whatever our particular niche is within the movement and whatever we do to bring about a better life for ourselves and our community, we must all have within us a vision for a better world.

That vision may not exactly look the same to everyone within our community and should evolve as circumstances change. Some of us focus our time and energy on particular issues or ideas. Right now, I am very interested in asking how the goals and practices of medicine and biological research would be different, IF people’s concepts about disability were different. My vision of a world that will exist, IF ableism is torn down looks much clearer in that area then it may look in the area of disability community and pride building, an idea that my friend Stacey is in love with and works relentlessly to promote. Many organizations strive to bring about their vision of what employment would be like, IF people with disabilities were not discriminated against. Other activists have a passion for bringing about radical changes for young people with disabilities by teaching them to ask and answer the “IF” question as they develop into present and future leaders. Many of the most driven activists work to end the institutionalization of people with disabilities because they have a powerful vision of what our world would look like IF people had what the needed to live independently in the community. Access to public space has largely improved, but is far from the wondrous vision promised by the ADA, which asked a broad range of IF questions, inspired by one of my heroes Justin Dart.

Every day it seems I meet activists within our community that are asking their own version of the “IF” question in new and exciting ways, answering it with every ounce of energy they have. The ability to ask “IF” gives us our drive because it gives us our hope.