Can We Talk About Disability?
Can we talk about disability?
Posted Sep 16, 2008
While I might recognize the need for more discussion in this area, I have no expertise. My medical files are relatively thin and health psychology wasn't my cup of tea. I'll have to adopt the role of reporter for this one.
Fortunately, I've had the pleasure of knowing Dr. J. Galen Buckwalter for the past 15 years. He's a research psychologist and C6-7 quadriplegic following a dive into a shallow river when he was 16. I'm not surprised if you recognize the name. He is Chief Scientist for a little dotcom called eHarmony. He's the lead singer of an L.A. indie-punk band named Siggy. He's also one of three subjects/co-directors of an award winning PBS documentary titled Rolling, produced by MacArthur "Genius" Award winner Gretchen Berland. Maybe you heard about it on NPR. Or read Galen's account in the New England Journal of Medicine. He gets around.
Rolling follows the lives of three normal people living under extraordinary circumstances in wheelchairs. Cameras were attached to their chairs for two years of filming, giving incredible point-of-view cinematography as they encounter the challenges of healthcare, relationships and a wheelchair-unfriendly world. If you haven't had the chance to catch the PBS showing, I highly recommend you take a look. It streams online here. I think it should be standard viewing for every mental and physical health care provider, whether you work with disabled people or not.
Galen has been kind enough to grant me an exclusive interview. We're old friends, so forgive the informal nature.
Ryan: Nice film, dude.
Galen: Yeah-the little film that won't stop. It's gone through more edits than a Siggy CD but I am quite proud of it. Thanks.
Ryan: Before I get started: crippled, handicapped, disabled, differently-abled, etc. Your thoughts and preferences?
Galen: Just not ‘late to dinner.'
Semantics are certainly relevant in some civil rights issues but when you are talking about chronic physical differences there are so many flavors that trying to find an overarching label is somewhat akin to trying to find a label for all of the types of music that suck right now. I mean does shoegazer really differ from emo, and does emo differ from dreampop? It is all music and unless you like a particular type in a profound way it really doesn't make much difference. My personal preference for my specific condition tends toward the more descriptively confrontive. Gimp, cripple; they both seem to describe how I am physically different from the norm and they also imply that my physical anomalies underlie social stigmas. And they both have a bit of punk rock flair about them, no?
Ryan: Uh ... yes they do. I can already see the comments section filling up. I'll start with a softball. This PT site doesn't currently have a blog dedicated to physical disability. Do you think disability has a place in the discourse of psychology, or should it be left to medical forums?
Galen: If my experience is to be taken as representative, leaving disability to the medical community will guarantee we continue to receive inconsistent care. But perhaps a more profound consequence of psychology's decision to ignore the range of disabling conditions and chronic illnesses as an identifiable human condition is that psychology will continue to fail to learn from the experiences of literally millions of people. The lessons these people, myself included, have learned from coping with issues that are so challenging to so many people, such as physical trauma and social isolation, should not be ignored. If psychology is going to understand coping mechanisms we best get comfortable talking with and studying those who are in a position to understand it.
Ryan: Well said, and not just because you agree with me. But that's nice too. Speaking of coping, how have medical, psychological and/or relational interventions helped with the loss of function and chronic pain you've experienced?
Galen: The most critical day in, day out medical need I have stems from the pain I experience as a result of extensive spinal column deterioration. There is no way to manage the level of pain without the use of hard core medications. So my pain management folks help me balance that fine line between not seeing double because of the pain nor from the medications.
I am fortunate enough to have found a doc who has seen a ton of folks starting to age with spinal cord injuries. His experience is invaluable, he is determined not to let my kidneys take me out so he watches them like a hawk. He pretty much goads me into taking care of my skin, which does seem to be my responsibility. I came to the realization a long time ago that if I am going to live I have to accept the responsibility for a lot of my medical care; I need to use effective methods of cathing and keeping my caths clean; I have to take care of my skin; if I am going to make it I have come to realize that I do need to be my own doc in a number of ways. But honestly my wife is as much my own doc as I am. The way I understand surviving SCI is that my doc has to coach the team, but the players are indispensable.
Ryan: Hmm. Players who listen to the coach. Sound advice for your beloved Eagles as well.
Galen: Bite me.
Ryan: Sorry man, low blow. In the film you talk about how you are expected to "feel and act disabled." Could you expand on that?
Galen: Just try sitting your ass in a wheelchair for a day and you'll see what I mean. The perception seems to be "if you're not walking, you're not thinking." Everyone has their assumptions about what your abilities are. People see someone in a chair and jump to conclusions - many of which are false.
Ryan: Okay, last question. Let's say you're struggling with a heavy door that doesn't have an automatic opener. If someone walks by, what would you like them to do? Offer help or leave you alone?
Galen: Damn! No more softballs, apparently. This one is difficult because it depends on the day and the situation. It's like any social dance where two people are dealing with their own circumstances. I never feel any antipathy against walkies who offer assistance; but I know some gimps do. Some days I want to conquer that door myself, while other days it's the last thing I need. It's one of those dances that's hard to call: sometimes you lead, sometimes you step on the poor girl's foot. That's the bite of disability as with many other things in life: the answer is not always clear cut.
My deepest gratitude to my buddy Galen for putting up with my newbie journalism. Alright, PT, that should get the ball rolling. Your turn.