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?

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

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

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

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

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

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

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

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

ADAPT button with our standard slogan!

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

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

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

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…”