Atlanta Action Follow-Up Crip Conversations: When Activism and Scholarship Converge
Feb 01

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

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?

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3 Responses to “Reflections on Haiti, Privilege, and the “Glue” of the Disability Community”

  1. Kara Ayers Says:

    We also shared the same immediate response to the Haitian disaster-wondering about the disability community in the area and finding a charity that specifically serves them. It was interesting because we lived in Miami for five years and have some friends/colleagues from Haiti. Still, we somehow felt most connected to a group that we haven’t met. For me, I don’t think it’s only hinged on the negative aspects of abelism. It’s also about empathy-it’s easier to put myself in their shoes/wheels during a disaster than it is to do the same for able-bodied people. I also know that during such a time, it would be emotionally helpful for me to see/be around and know that other people with disabilities are surviving. I hope that our society will continue to keep all the people from Haiti in our hearts. Their challenges don’t fade with our attention spans.

  2. eleanor Says:

    Is the primary experience of disability a negative one of oppression and if so, what does this mean for our community?

    Before the disability rights movement, no one spoke of people with disabilities as a community. Seems to me that the “community” only evolved once we learned to overcome bigotry, which produced positive individual identities, which led to a communal identity based on values. I think we relate to people with disabilities from other communities because (even though their experiences may be very different from ours), they have the same right to define their identities that we do, even if those identities (and communities) might end up looking very different than our own. I think I relate to a universal positive potential of disability community. Nice blog.

  3. Brent Rydin Says:

    Great piece, makes me personally reflect on the “feel-good” altruism that is widespread in the reaction to Haiti. Most people don’t feel any sense of community, not even simple human race community, with those who have been afflicted by the earthquakes; they just know that something bad happened and that they should respond to it in some way. All of this, however, is simply mandated by ideas of their own community - for instance, that of other middle-class white people and the need to appear and feel altruistic.

    I think that the question of a sense of community with disabled victims of the earthquake is an important one with an obviously complicated answer - no, I don’t think you can fully comprehend or relate to their pre-earthquake lives, HOWEVER I think the disability perspective makes you either more able or more willing (or both) to try and to look for that connection, which is better, in and of itself, than the reaction of most people. There’s a sense of “otherness” surrounding Haiti, even among those who want to help; I think that you have the advantage of being able to diminish that to some degree.

    I don’t think it comes down to a question of disability but a question of all humanity and you shed light on the fact that most people don’t try to see the things that we have in common with the rest of the world and with our brothers and sisters in Haiti.

    Thanks for posting this; really fantastic piece. Hope all is well.

    Brent

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