PhilosopherCrip

This semester, I’m taking a philosophy course on international development ethics and a major theme in this literature is the controversy over what we owe to whom and why.  Some would argue that, morally, we have a stronger responsibility to prevent or ease the suffering of those we have some kind of relationship with.  It is probably too easy to reduce this sort of perspective to an argument favoring a sort of parochialism or nationalism.  The “charity starts at home” camp can use this kind of thinking to ignore the sufferings of others who speak a different language, practice a different religion, or have a different skin color.  However, this sort of reduction is too easy.  Surely, even the most radical progressive would agree we DO owe our own family members more than we would a stranger.  I know that I am all for challenging power structures and redistributing wealth in the US and globally, and am willing to work for radical changes toward these ends.  However, at the end of the day, I’m not about to offer floor space and an air mattress to a random homeless person in Lansing, but if a close friend or family member needs this kind of thing they know my door is always open.  I have helped friends in this way and would gladly do it again.  I think most people feel this way.  Some folks put more weight on relationships than others do when it comes to our moral obligations to help and there are differences regarding which relationships are emphasized, but I think we all share an intuition that relationships matter in a very deep way.

Sometimes, the identities we have seem to entail certain relationships, and with those relationships come moral responsibilities.  For me, when disaster recently hit Haiti, one of my first reactions was to want to reach out to the disability community there, knowing that most times people with disabilities are especially vulnerable in natural disaster situations (just by virtue of the fact that people with disabilities are vulnerable in general because of poverty and lack of political power).  Of course, with a disaster like this comes new disabilities, as well, and my first thoughts were toward those folks especially.

I became aware of Portlight Strategies, a non-profit disaster relief organization that organizes relief efforts on the web and specifically targets facilities that are helping people with disabilities.   Soon, a friend brought to my attention an organization that was partnered with others and offered a comprehensive list of disability aware relief efforts, Mobility International USA.  I donated a (very small) sum, posted these links to my facebook profile, and continued to go about my business of living.

Of course, this was not nearly enough, but it was what I thought I could do at this point in my life as a grad student with very limited time and income.  Ironically, this gets me back to my original point of relationships at least somewhat determining our responsibilities.  To be sure, if my family was in Haiti, I would have had a very different response.  I recognize this has a lot to do with my own privilege.  As a white, middle class American, I could make myself feel warm and fuzzy and then carry on my daily life without thinking much more about the horror being experienced “over there.”  Even the suffering of my disabled brothers and sisters is distant enough that I can set it aside to read for class or talk on the phone or see a movie or play a game of scrabble or have a beer.

As I continued to go about my business of living, my living often comes back to reflecting on events in my life and the world in general and this was no exception.  The question I am reflecting on is “what about the disability identity binds me to the crips in Haiti and makes me feel more responsible to them than I would others?”  When we start to unpack this question, it’s not as straightforward as we might think.

A Map of Haiti

It may be factually true that people with disabilities are more vulnerable than others in times of disaster and often do not receive relief services because of inaccessibility or outright bigotry.  Yet, that wouldn’t itself explain my reaction.  Surely, the same is true for other kinds of oppressed groups (gender and class especially), but my heart and mind did not immediately go to those marginalized populations and neither did my energy or resources.

Something must have moved me to want to reach out to people with disabilities in particular.  I think this is because I identify so strongly as being part of a larger disability community.  That is, like a family, I felt that I was part of a group that included disabled people in Haiti.  That is, I had some sort of relationship with them that made me more responsible for their well being than I would be toward your average Haitian, at least to some degree.  This idea didn’t really get me very far.  I found myself trying to understand what this compelling relationship was and whether it was something that actually should compel me.

Surely, the bio-medical facts of disability do not, by themselves, create a community.  The only folks I’d personally have  much in common with bio-medically would be Haitians with dwarfism that use a wheelchair.  Feeling some kind of obligation toward them based on mere biological similarity would be absurd.  It would be like feeling community with other people who have brown eyes or a slightly cleft chin.

Rather, the sense of community I felt toward Haitians with disabilities must have something to do with how disability mediates one’s experience.  The sense of community I had with the disabled of Haiti had something to do with a common experience that was shaped by our disability.  But what is this common experience?  Surely, it isn’t anything to do with a particular diagnosis.  I don’t have the same phenomenal experiences as someone with an amputated limb or a spinal chord injury or a brain injury.  That is, I have never felt phantom pain or lost bowel/bladder control or was off balance.  Instead, my disability identity that leads to this sense of community through common experience has something to do with having experienced ableism.  This leads to 2 further questions, both of which are too big to really be explored in a blog.  The best I can do is state them in a way that will get people thinking along these lines.

1) Is the primary experience of disability a negative one of oppression and if so, what does this mean for our community?  By analogy, racism has something to do with the identity politics of race, but surely rich, vital cultures are at the center of the African American or Latino communities.  Likewise, sexism has something to do with being female, but surely there are uniquely female experiences that are positive ones.  Is the harm of ableism the only thing that binds together the disability community and makes my experience something like that of a Haitian disabled man’s?  What does it mean for a community to define their identity purely in negative terms in this way?  Are there other alternatives?

2)  How “common” is the experience of disability REALLY?  As a white, physically disabled, highly educated, middle class straight man, does the ableism I grapple with in my everyday experience look anything like what a poor Haitian is experiencing during this crisis?  What characterizes this ableism that “we” experience and whose experience gets to be the defining one?  Can I speak to anyone else’s experience in this regard?  Would the tools I use to understand and struggle with ableism like the social model of disability or “independent living philosophy” even make sense to someone in the context of post-earthquake Haiti?  Do I have a right to even think that my experience is like theirs in some way, being that ableism is a culturally defined oppression and I am utterly ignorant of their culture?

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

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

Micah on his campus

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

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

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

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

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

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

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

Recently, there has been a court case in the news about Jarek Molski.  He is a Californian that has recently been told he can no longer bring lawsuits against public businesses that are in violation of the ADA by not allowing for access to their services by wheelchair users.  These violations are of the sort where businesses do not have wheelchair ramps or accessible parking.  The US Supreme court upheld the decision to ban Molski from filing any more law suits — by refusing to hear his most recent case — because he has filed more than 400 of them.

I have no legal training, so my analysis and opinion should be taken with a grain of salt.  However, strangely enough, I agree with the US Supreme court on this one, not because of the NUMBER of cases but because of the OUTCOME of many of these 400 cases.  The LA Times reports, “Fear of adverse judgments compelled many to settle out of court, earning the Polish-born plaintiff hundreds of thousands of dollars in less than two years.”  That is, these businesses were not becoming accessible as a result of these law suits, but paying this man settlements instead.

To me, this is completely absurd.  In fact, I don’t think personal payments should even be allowed in these kinds of ADA cases.  I don’t have a law degree, but it seems to me that these kinds of cases involving access to public space (as opposed to cases that have to do with something like employment discrimination) have very little to do with harms to an individual, but rather harm an entire community or class of people.  It makes absolutely no sense for a harm being visited upon a large group of people to be “settled” by a payment to an individual.

I find the notion that any one individual should have personal gain from these kinds of cases completely and utterly despicable.  This is because he is essentially making a profit of off our community’s marginalization and oppression.  In my opinion, he is no better than a nursing home industry lobbyist that makes a profit off of the isolation and incarceration of our people, who want to live in the community but are stopped by his work manipulating health care benefit laws to exclude community choice.  Somehow, it feels even more repugnant because Molski is supposedly “one of us.”  He knows what it feels like to be excluded from a restaurant or a bar or a barber shop or a book store or any number of places, but chooses to line his pockets and preserve that feeling for others.  This is the ultimate act of selfishness and exploitation.

Perhaps, in the most egregious of cases, it would make sense to award punitive damages to punish the offending business (especially when that business has very deep pockets and could have easily been accessible).  Even then, I feel uncomfortable at the idea of making a payment to an individual as a way of mitigating a harm suffered by an entire community.  I wonder if it would be possible to pay such fines to non-profit organizations that fight for the good of people with disabilities as a whole, like Centers for Independent Living.  Perhaps payments could be made to a scholarship fund for students with disabilities who want to attend college or a fund that helps individuals with disabilities to afford modifications to their living space or transportation to make it accessible?  Maybe these are all pipe dreams, but the thought of paying a single person money to somehow make up for the marginalization of an entire people turns my stomach.  This is NOT what Justin Dart had in mind when he devoted his life to freeing our people with the passage of the ADA.

Many of my friends, colleagues, and family members have heard me rant about pity on many occasions. I am very proud of a recent seminar paper I am preparing for future presentation and publication (hopefully) that is titled “Why We Want to ‘Piss On Pity, or How The Ideology of Pity Is a Social Harm to People with Disabilities.” Surely, this blog will serve as a way to test drive many of my ideas about pity, as I try to sharpen them and work them out more fully. One of the main challenges raised every time I mention pity as a harm is the idea that there is something very positive that is closely related to and sometimes confused with pity. This “something” is sometimes called compassion or empathy or sympathy.

While I agree that this something is sometimes linked to pity in our thoughts somehow, I want to argue that this something goes so far beyond mere pity that it becomes its opposite. For the sake of this essay, I will call this something empathy.

While I am not going to take the time to completely lay out my argument for why pity is a harm, let’s start by saying that pity depends on the existence of a harmful power relation and serves as a way of preserving that power relation. For pity to exist, there must be a power inequality between the pitier and the pitiful. Someone must be better off than someone else and look down upon them from a perch of privilege. Pity preserves this set of pre-conditions because it does not acknowledge or work to change this power relation. In fact, pity treats this power relation as inevitable and natural. Responding to someone’s suffering with an act of pity obscures the fact that the root causes of their suffering could be changed. For example, let us say that someone responded with pity to a person with a mobility disability who could not access a restaurant because of a staircase. That able bodied person may express their pity with words of sorrow at the chair user’s horrid predicament at not being able to walk up the stairs. Perhaps, the able bodied person may offer to get a take out order for the chair user. However, these responses do not at all respond to the fact that the chair user could enter the restaurant if it was ramped. Once you make the move to thinking about the problem in this way, you move away from a response of pity and toward a response of justice. A ramped doorway is not an act of pity, but an act that equalizes people’s power status and contributes to considerations of justice.

However, just as an unequal power relation is a pre-condition for the existence of pity, it seems to me that empathy is a pre-condition to the existence of justice. The “golden rule” or the ability to place yourself in the situation of the suffering other in a genuine way (aka empathy) dismantles this power relation. When we are able to authentically imagine ourselves in the situation of the person who is suffering, we recognize that mere pity is harmful and that we must address the power relation itself that has created this suffering.

While talking to a friend who also has dwarfism a few days ago, she told me a story about the first time she meant someone that was homeless and had dwarfism. She was struck by their suffering, gave them a hug, and bought them lunch. The fact that she hugged this man speaks to me that this was an act of empathy and not mere pity. That is, she treated him as a respected friend rather than an other she was looking down upon. Without any prompting, she explained her actions as motivated by a sense that “that could have been me…” She recognized that the injustices in our society create a system where folks with disabilities like dwarfism (and every other kind of difference that would be characterized as disabling) face huge challenges of bigotry that severely limit their flourishing. With these words of “that could have been me…” she recognized that it was a matter of chance that she was born into a family that had the disposition and the means to not turn her over to the state for a life of institutionalization. The chance of her circumstances allowed her to join Little People of America and gain access to a network of support and eventually get a college degree so that she would not face the same suffering of this man on the street. My friend recognized that it was an accident of fate that positioned her to help this man in the way that she could and that this was a matter of injustice. This friend has developed a perceptive empathy for these kinds of situations and these experiences have moved her to become involved in the disability movement and pursue a law degree so she can address these matters of injustice head on. I think her desire to fight for and with the most marginalized folks with disabilities all comes back to her ability to say “that could have been me…”