Tuesday, September 15, 2009


VLADIMIR - Well? What do we do?
ESTRAGON - Don't let's do anything. It's safer. (Waiting for Godot 1.194-5)

An article in the New York Times brings me back to healthcare. (http://www.nytimes.com/2009/09/15/technology/15speech.html) This story, about the difficulty faced by people with speech impairments trying to find helpful devices covered by insurance, is only tangentially about autism. But it points to the myriad obstacles - problems that have nothing to do with one's diagnosis - faced by people in our culture who have life-long medical conditions.

It's hard to imagine the extent of the madness of our system until someone you love has a diagnosis. Then you get a long, slow, and painful initiation to caring for your body in our society. Maybe it will involve holding a bake sale to buy your kid's hearing aids (My mother's friend did this). Maybe it will be the never-ending headache caused by filling out forms and finding out what qualifies for coverage or trying to read your medical bills. Or maybe it will be when you discover your insurance would rather cover childbirth in a hospital than childbirth in a mom-friendly - and less expensive - birthing center (This was my experience when I had my daughter). The absurdities come in a never-ending stream.

Needing medical attention in our country is like a Beckett play that never ends. You hear phrases and sentences with recognizable words but the plot works against every effort to make meaning. When you try to get treatment here, you often find yourself unable to do this most vital thing. And yet the words "treatment" and "health" and "cure" are all around you.

And yet, as with so many things in life, many of us are willing to fall on our swords in defense of the system we have, in defense of what we know so that the unknown can be kept at bay at least a little bit longer. But for those of us who love people who need medical attention, the unknown and out-of-control is already here. Diseases and conditions have already delivered us ample portions of absurdity. So why do our systems of treatment add to it? Shouldn't they help us make sense of our lives that have been dramatically altered in the course of a simple doctor's visit? When will we have a system that helps us have grounding and composure in our health struggles instead of an extended replay of our vulnerability played out in every office interaction, bill in the mail, and service denied?

Don't let's do anything. Great. I'm still here and still waiting.


  1. Amen. You should really turn this into an op-ed or letter to the editor, Jen.


  2. If this becomes an op-ed, please be more specific as to what part of "the system" needs fixing. Have you had poor care from doctors, nurses, and therapists? Or is it that for-profit insurers are unwilling to cover services that are likely helpful?

  3. It is odd to me that the above poster finds this blog entry ambiguous as to the question, "what is wrong with the system?" It seems clear to me that rainmom thinks that there are excessive barriers to receiving care put in place by insurance companies and the government. When you read the nytimes story she is referencing, it is clear that the chief specific difficulty she is addressing is getting the appropriate technology to help the patient cope with a long-term disability.

    By and large we have had reasonably good care provided by our doctors and nurses and therapists. However, as rainmom describes it above and in previous posts we have often felt hampered by "the system" which is usually embodied in our insurance provider and sometimes the hospital administration.

  4. But Stacy... that doesn't fit the neat narrative that either side in this health care reform kerfuffle have advanced as depicting the problem.

    Rainmom is correct; our current "consumer-health service delivery mechanism" is absurd. [One should not call it a health "care" system as there is rather little systemic service delivery oriented around caring for health. Rather, this mechanism is a system to react to ill-health, though not in a way that maximizes healing]. The only logical solution is eradication and reassembly. Of course, that ain't happening. Thus, our health service delivery mechanism will continue to block efficient solutions (such as paying for a netbook, as in the times story) in favor of inefficient ones, because the inefficiency fits the system.