Revisiting Ashley X: My Struggle as a Philosopher-Activist

“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.