Friday Philosophy: How small is the universe in universal?

Debbie and I were informed about a week ago that our doctor was changing locations, leaving the Family Health Center in Montclair for another practice a half hour away.  We are left with the decision of whether to follow her or keep going to the Family Health Center.

For me, that’s not as straightforward a decision as it would be for most people.

Treatment by medical personnel, doctors, nurses and office staff can be a critical issue or transfolk.

Of course, I can only speak for myself and my experience should not be deemed universal.  That could be the point…or at least one of them.

Since my transition I’ve never had a primary care physician who knew how to care for me when I went to him, her, her, her, or her.  I’ve trained four doctors, all but the first one, how to care for transsexual patients in a seventeen year period and paid for the privilege.  That first doctor admitted he hadn’t a clue but said he was willing to study online and learn how to treat me…and he taught me how, so that I could pass the information along.

Unfortunately, he died from anaphylactic shock when taking a medication he didn’t know he was deathly allergic to early on in our doctor/patient relationship.  So I had to find another doctor which accepted my insurance, and then another when I discovered all #2 did was prescribe pills.  I had to travel almost an hour for every visit to #3.

Then we moved to New Jersey and I found someone at the Family Health Center who was willing to learn.  Then she left for bigger and better things and I had to train her replacement.  #5 is the one who is moving on now.

It would be nice to say that this has all gone as smoothly as could have been expected, but that would be a lie.

#1 had to change practice locations because the people at University of Arkansas for Medical Sciences, which ran the first place, weren’t crazy about him treating a transwoman…or having me sit in the waiting room, in public for everyone to see.  So then I had to start going to North Little Rock.  A similar objection was raised by the doctors who shared #3’s practice.  I was instructed not to come early and to sit in the smaller waiting room that was out of the way.  I’ve not had that particular problem in New Jersey, but the doctor who administrates the center pretty much always gives me a good sneering when she sees me.

I guess I shouldn’t complain too much about her, however, since she has actually given me a physical exam, which I needed before I could have eye surgery, and none of my primary physicians has ever done that.  Such is health care for many transfolk.  People would just rather not ever see our actual bodies.

The treatment by some of the specialists I have been sent to has been worse…which has made me grateful for what little care I have gotten.  After I had my thyroid irradiated because of a metabolism problem I was having, #5 sent me to an endocrinologist for an evaluation.  Mind you, this was 14 years after my surgery.  The doctor turned out to be extremely Christian and threatened to have the police called when I wouldn’t leave her office without my records.  That was after she almost climbed out the office window when I went in for my appointment and she discovered I was a post-op transwoman.  Her reason?  She doesn’t treat men.

Have you ever been denied treatment because of what you are, because of the class of people you belong to, and someone else’s opinion of the member of that class?

For some reason, I haven’t been able to summon the courage to see any of the other specialists I have been sent to since…except my eye surgeons.

And that takes me back to the original problem I mentioned:  going to a new office would require building relationships with new nurses and new office personnel and at 61 years old, life is becoming too short to face more disrespect that I have to pay good money to get.

Of course, part of the money they get comes from an insurance company.  And therein lies another tale.

When I began transition, it was no surprise that the insurance carrier for my employer, a state university, did not want to pay for anything in the way of treatment for me.  Not for a mental health therapist, let alone two (which are required as part of the procedure), not for a physician, not for prescriptions, and definitely not for anything in the way of surgery.  Their problem, however, was that there was no specific exclusion for the treatment of gender identity disorder in the contract.  I mean, who would be stupid enough to transition as a professor at a state university in Arkansas in the early 1990s?

That would be me, of course.  And I can read a contract and I did.

The carrier insisted that it was experimental treatment.  They claimed that it was for a pre-existing condition.  They claimed that it was elective.  I’ve heard the same words from people who call themselves progressives in recent years.

It may be hard for people to believe at this point in my life, but back then it was very difficult for me to speak up for myself.  People were continually taking advantage of me because of that.

But in this case I did speak up.  I complained to our HR person, who had suddenly become a representative for the carrier.  I got the name of the person I had to submit a complaint to.  And I did complain.  Getting no satisfaction, I complained to her supervisor.  And I transcribed everything along the way.   An eidetic memory comes in handy sometimes.

I also was learning how to use my voice  I often cringe when I read my words from back then, but here was part of what I wrote:

Surgical treatment for a person with a gender identity disorder is not merely another elective procedure.  Typical elective procedures only involve a private mutually consenting contract between a suffering person and a technically competent surgeon.  Surgeries for GID are to be undertaken only after a comprehensive evaluation by a qualified mental health professional.  Surgery may be performed once written documentation testifies that a comprehensive evaluation has occurred and that the person has met the eligibility and readiness criteria.  By following this procedure, the mental health professional, the physician prescribing hormones, the surgeon and the patient share in the responsibility of the decision to make irreversible changes to the body.  The patient who has decided to undergo genital or breast operations, however, tends to view the surgery as the most important and effective treatment to correct the underlying problem.

In the end, I had to go higher…to the Arkansas State Insurance Commissioner.  And I won, for the most part.  The carrier had to pay for therapy because it was legitimate treatment, and for a physician, because even transpeople deserve medical care, and for whatever that physician might prescribe as part of my treatment.  And the commissioner ruled that the subject of surgery would be re-addressed when it because relevant to do so (the whole thing is, after all, usually a two-year process).

I spoke up and I won.  That may be rare, but it taught me a lesson.  I’m sure that some folks would prefer I hadn’t learned it.

All did not go extremely well from then on.  The university colluded with the insurance company, dropping them as the carrier for one year and then reinstating them with a new policy which did specifically exclude surgery.

All this for a procedure with a bill of less that $10,000.  They spent more than that for treatment of alcoholic faculty members.  I guess they were afraid that it would set a precedent.  If they paid for my surgery, all the faculty members would want sex changes.  C’est l’absurd.

Through all of this I was one of the lucky ones.  I kept my job.  In the vast majority of situations that wasn’t going to happen.  After all, we have almost no protection against enrollment discrimination (see ENDA).  It’s very easy to be overwhelmed with depression when one loses the job one has and finds absolutely nobody who is willing to take a chance on hiring one of us.  I guess they think that if they treat us badly enough, we will stop the transitioning.  Is it any wonder that there are so many suicides among us?

Is there any wonder that so many transwomen turn to sex work?  Not that there is anything wrong with wanting to do that, but do you think that if just perhaps we could get alternative employment and or health coverage that would help defray the cost of transition, we might choose that alternative, that we might choose safer environments in which to work?

And this brings me to the end…for now.  I’m concerned, now that folks are talking once again about universal health care, that the universe will be unnecessarily small…too small to include people like me.  I especially get that feeling when I start seeing the following:

The stomach stapling and sex change both involve what could be considered “harm”. Permanently changing the person’s body in a way that has the potential to be highly harmful.

its cute that a SEX CHANGE operation is being used as the example of unneeded healthcare coverage…  what other extreme examples can we use in order to make ‘rationing healthcare’ seem more palatable to population in general?

We are not harmed by our treatment.  And we are not “examples of unneeded healthcare.”  We are people.  We deserve, at the very least, to be addressed individually when it comes to our health care.  I think we deserve not to be dismissed as an undesirable class out of hand.

A Thousand Cuts

Sharing Health

In a fair world

a just world

a world balanced

for sharing

rather than greed

we wouldn’t need

to worry

that someone else

getting healthy

would harm us

We wouldn’t seek

to capture

the value of their health

fearing that it would

diminish our own benefit

When can we arrive

in that place?

–Robyn Elaine Serven

–February 6, 2009


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    • Robyn on February 7, 2009 at 00:01

    …but I’m battling a headache since I went without my Zyrtek for two days (which my insurance ought to be paying for, but that is another battle), so I’ve been running a little late all day.

    • Robyn on February 7, 2009 at 01:43

    …in Orange.

  1. a terrific essay.  Thank you for writing it.  Now, I’m off to Orange to tip & rec there.

    • Alma on February 7, 2009 at 05:42

    And I thought they treated the uninsured bad.  Silly me.  You would think people in the medical field would be smarter and a little less scared.  They work on people that have truly horrendous injuries, deformities, and communicable diseases, and yet they treat you like a plague carrier.  

    Thank goodness for doctor #1, and I’m so sorry he died.

    Maybe you could try staying at the clinic and if it doesn’t work out after a visit or two, then you could follow your doctor.  The older one gets, the harder change seems to be.  Or at least for me it is.

  2. …kind o’ sporadic online these days.  Or rather, anything online that isn’t a technical whatist on my own VM :}

    My doctor just…disappeared.  Poof!  Records, doctor, everything.  The medical center puts me through to a number that connects to a day care center.  Have some real medical issues.  Now have to find a new one, and have put it off for about a month and a half for exactly the reasons you describe.  Bah.  Hate this shit, passionately.  

    Recently had to find an OB/GYN who was willing to deal with aftermarket gear.  Every chica, trans or not, runs into squicky GYN practitioners :}  But realizing that my surgeon — who I partly picked for being nearby, in Portland — had been run out of town by christians, and that my choices were “fly to Arizona” or “have squicked local asshole put things up there” because of that definitely gave me a few moments of that disempowered, chip on shoulder blow them all up feeling.  It is bad for me to hate these people.  But I do.

    Have the ususal t-girl doc stories.  My huisarts in the Netherlands who could not get her chair away from me fast enough.  Being in the AIDS ward when hospitalized because, well, even though I’m HIV negative, that was the only place they had nurses and doctors trained to deal with trannies sufficiently well to avoid a lawsuit (at least, I hope that was the why — they did real well by me medically, so I have no complaints at all.  I used to joke that getting one’s own private room, so as to avoid squicking the other patients, was “transsexual priviledge”. )  Generally I go to GPs and endos in big cities who have other trans patients.  Having trans patients is no assurance they aren’t bigoted weasels or would-be pygmalions; and sometimes weasels and pygmalions have other redeeming qualities, like brilliance or other sorts of competence and decency.

    I do see myself as, in some ways, a medical experiment.  I’m quite sure that trans tech as it exists will shave a significant number of years off my life.  The many surgical things I’ve done mean I’ve chosen to roll those dice, repeatedly.  I am genuinely OK with that.  The corrolary is that I feel compelled to know what results are out there, what choices and tradeoffs I’m making, and feel like I’m OK with each bet, no matter how it goes.  


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