Securing Health Care for Our Community: Activism, Advocacy, Policy, Politics & Practicalities
Translating Identity Conference
University of Vermont
13 October 2012
Pauline Park, Ph.D.
Chair, New York Association for Gender Rights Advocacy (NYAGRA)
and President of the Board of Directors & Acting Executive Director, Queens Pride House
I’m honored to have the opportunity to give the keynote speech at the Translating Identity Conference here at University of Vermont. This is my first time visiting this campus, my first time in Burlington and my first time in the Green Mountain State. I’d like to begin by thanking the hard-working TIC 2012 committee that organized this year’s conference, including Asher, James, Jen, Kat, Katherine, Morgan, Samuel, Shannon and especially Eliza, who was instrumental in arranging my appearance here.
And I’m delighted to see that UVM is moving forward on a number of transgender-inclusive policies, including gender-neutral restrooms, inclusive on-campus housing options, and preferred name and pronoun information on various lists on campus. Given that transgendered and gender-variant people face pervasive discrimination in attempting to access health care in the United States, I’m especially pleased to see that UVM’s insurance plan now includes gender transition-related treatments and procedures such as sex reassignment surgery (SRS), or as some call it, gender reassignment surgery (GRS). When I address the topic of transgender community access to health care, the topic of surgery inevitably comes up. But of course, SRS is only one aspect of transgender health care, and most transgendered people I know don’t want it; surgery should be included in every health care plan, but it is going to be the end point for only a relatively small number of trans people, and the question of accessing health care for members of our community should not be focused primarily on SRS, much less limited to it. Because the reality is that it is those thousand and one aspects of health care that do not have any direct relation to gender transition that need to be addressed at least as urgently as those that do.
To state the obvious, individuals in this country access health care — or are denied access to health care — in many different contexts and circumstances. Some of the impediments to accessing quality health care are obvious and some are not. Based on my own experience as an activist, advocate and consumer of health care, I’d like to offer ten simple rules that health care providers who are committed to full transgender inclusion in the provision of health care may wish to consider:
Rule #1: Effective health care provision requires the construction of a relationship of trust and confidence between the provider and the patient/client/’consumer.’ It is the responsibility of providers to educate themselves on issues of gender identity and gender expression in order to serve their patients, clients, and consumers sensitively and effectively. Conversely, it is also the responsibility of transgendered and gender-variant people to do what they can to educate and empower themselves and work with health care providers in order to obtain the best health care that they can.
Rule #2: Effective health care provision requires that providers take into account the diversity of the transgender community, which is extraordinarily diverse — in terms of gender identity and expression as well as race, ethnicity, religion, dis/ability, and sexual orientation. There are as many ways of being transgendered as there are transgendered people.
Rule #3: Health care providers need to understand that sex reassignment surgery (SRS) is not the end point for most gender transitions. Most transgendered people do not want SRS and most who do never get it. There are as many ways of transitioning as there are transgendered people.
Rule #4: Transgendered and gender-variant people are denied care in many areas not directly or even indirectly related to their gender identity; any attempt to address health care provision for members of the community must address those areas not related to gender transition as well as those areas that are transition-related. Some transgendered people are denied coverage for treatments or procedures that relate to their anatomical or biological sex assigned at birth, such as prostate cancer for transgendered women or cervical or ovarian cancer for transmen. Only in a relationship of mutual trust and respect can physicians and other health care providers be sensitive and informed enough to provide effective care in such areas.
Rule #5: The impediments to health care access are both medical and non-medical and effective health care provision requires that providers take into account and address both sets of impediments. Transgender sensitivity training should focus primarily on the psychosocial aspects of the interaction between providers and consumers, and that training should extend to physicians and nurses as well as everyone in a health care facility.
Rule #6: Health care providers need to avoid pathologizing transgendered people through the false diagnosis of gender identity disorder (GID) while at the same time understanding that such diagnoses are used by some transgendered people to access hormone replacement therapy (HRT), sex reassignment surgery (SRS) and other desired medical interventions.
Rule #7: Transgender sensitivity training needs to be mandatory for all staff in hospitals and health care-providing facilities, including technical people, security guards, and intake staff as well as medical and mental health professionals; physicians should undergo psychosocial sensitivity training, regardless of participation in ‘grand rounds’ and other cognate medical trainings and discussions. Transgender sensitivity trainings should be no less than two hours in duration and ideally should be four hours long. Real training involves an intensive interaction between the trainer and the trained. Webinars and handouts may be used to supplement such trainings but can be no substitute for trainings themselves. Trainings should be conducted by those who have specific expertise in transgender issues, not merely those who do general ‘diversity’ trainings or even those who do LGBT trainings but who lack expertise on transgender issues specifically. Given staff turnover, trainings must be conducted at regular intervals.
Rule #8: All health care providers and health care-providing facilities should adopt policies and protocols that specifically prohibit discrimination based on gender identity and gender expression in the provision of health care, and such policies and protocols should be regularly and effectively communicated to all relevant constituencies.
Rule #9: Health care providers should participate in larger efforts to achieve legal and public policy change in order to provide effective and universal health care for all, including all transgendered and gender-variant people; providers need to understand that the denial of health care to transgendered and gender-variant people is part of a larger denial of health care access to and insurance coverage and payment for health care to LGBT people, low-income people, poor people, and people with disabilities in the United States.
Rule #10: There are no rules, only ‘best practices’ — or at least, better practices and worse practices; and such practices must be informed by the lived experiences of transgendered and gender-variant people.
Having laid out these 10 simple rules for health care providers, how can we bring every locality and state in this country up to the highest standard in the provision of health care for members of our community? I’d like to suggest three broad avenues that can lead us to that goal. First, legal and policy change; second, activism and advocacy; and third, social change through the transformation of understandings of gender.
With regard to the first — legal and policy change — one of the challenges in the United States is the relatively decentralized and diffuse structure of policy-making; as a transgender community and movement, therefore, we must be active at the federal, state and local level in order to shape law and policy at all levels; and we must move laterally across different arena in order to help shape rule-making by a large number of federal, state and local government agencies; it is not only the Department of Health & Human Services, for example, that has authority over health care provision at the federal, but scores of other federal agencies. Change in this area must include not only rules and regulations as well as agency policies, in some cases, it might even require the enactment of statute law by city councils, county and state legislatures and Congress. And in addition to legislation by legislatures and regulation and rule-making by executive agencies, legal change will need to be advanced by litigation and judicial decision-making as well.
And when it comes to legal and policy change, it is vitally important that that change not focus on only one element of the community. All too often, the focus in so many of these discussions has been on the medical interventions that are the most obvious element of gender transition; but as important as it is to secure coverage of and payment for hormone replacement therapy (HRT) and sex reassignment surgery (SRS) in insurance policies and health plans, ‘transgender inclusion’ must mean inclusion of everyone in our community, including non-transsexual transgendered and gender-variant people as well. Policy must not be based on what I call the ‘classic transsexual transition’ narrative to the exclusion of those who follow other paths to the actualization of their gender identity.
Rather than pursuing a narrow approach of seeking only to eliminate clauses excluding medical interventions associated with gender transition — important as that task may be — the approach that I would suggest would be to think broadly about how we as transgendered and gender-variant people should have unimpeded access to the health care system as a whole. And so I would urge us to commit to the goal of universal health care in the United States. The most efficient system is one in which there is a single payer, and as improbable as a so-called ‘single-payer’ system may seem at this particular juncture in our political history, I think it would be even more unlikely that half measures and partial reforms will get us to the goal of truly universal health care.
It is ironic indeed that the Affordable Care Act (ACA) has been labeled ‘socialist,’ since what has become known as ‘Obamacare’ has its origins in the policy discussions of the Nixon administration and was championed by Republicans such as Bob Dole and later Mitt Romney, who as governor of Massachusetts made the ‘individual mandate’ the core of the health care reform law that has since become known as ‘Romneycare.’ While the ACA includes some very significant advances such as the provision prohibiting denial of health insurance to those with pre-existing conditions, the new law does not get us to where we need to go. One significant lacuna is the lack of a provision explicitly prohibiting discrimination in the provision of health care based on sexual orientation and gender defined to include gender identity and expression; I would like to suggest that LGBT organizations make a priority the enactment of an amendment that bans such discrimination.
Such an approach would have the advantage of moving public discourse away from a discussion of specific surgeries and procedures and toward a discussion of how our health care system fosters institutionalized homophobia and especially transgenderphobia. Achieving enactment of such legislation would not be easy, but the tangible benefits to members of our community would be vastly more significant than merely ending exclusion of coverage of and payment for HRT and SRS from health insurance policies. And a campaign for such broad-based legal and policy change would enable members of our community to form coalitions and alliances with other communities and groups seeking social and economic justice in the area of health care.
There may be those who would view such an approach as ‘political,’ or at least more political than many currently take, which is to focus on securing access to HRT and SRS on the grounds that they are medically necessary. And there are those in our community who like to approach it as some sort of technical mechanical exercise. But it seems to me that legal and policy change is inevitably political; that point may seem obvious to me but it is not to some in our community. The pursuit of legal and policy change is by its very nature political in that it must be pursued in the highly politicized environment of policy-making at the federal, state and local levels in this country. A technocratic approach to policy-making can only serve to obscure the important issues, which are all questions of value. The truth is that there simply is no such thing as value-free policy-making and there is no such thing as a non-political policy-making context or arena. And it is not just legislatures that are political; executive agencies are thoroughly political, as are courts.
I’ve been a part of three successive coalitions that have attempted to change the policy of the City of New York so that transgendered people can obtain amended birth certificates without SRS — an important advance if we were to achieve it, given that most trans people I know in New York do not want SRS and that the birth certificate has become the governing personal identification document in the post-911 universe. The first coalition, which neither I nor my organization was invited to join, preceded the three subsequent coalitions and was formed in 2002, shortly after enactment of the transgender rights law by the New York City Council in 2002; that very first birth certificate coalition was able to negotiate a new draft regulation with the top staff in the Department of Health & Mental Hygiene (NYC DOH); and that new regulation, if adopted, would have eliminated the requirement of surgery for amended birth certificates, with enormous positive implications for access to health care as well as employment for transgendered New Yorkers.
What members of that very first coalition should have realized but did not was that an informal agreement without the assent of the mayor’s office was simply not sufficient in the highly politicized environment of New York City policy-making. Even with the sign-off of the commissioner (himself a political appointee) as well as the key deputy and assistant commissioners (both career civil servants), staff in the office of the Mayor Michael R. Bloomberg had not seen the draft regulation before it went to the Board of Health for a vote. For purely political reasons that had nothing to do with the merits of the regulation itself, the mayor’s office effectively vetoed the new draft regulation, ordering the Board of Health to vote down the proposed regulation and setting back the cause of birth certificate policy change in New York City for more than a decade.
So neither the merits of the argument nor sincerity and commitment are sufficient, even if they are a necessary part of the mix that is needed to bring about legal and policy change; political savvy and sophistication are also important as is the ability to organize and mobilize constituencies and allies. And that leads us to a discussion of activism and advocacy, which is how we can bring about important legal and policy change. And here it cannot be emphasized enough that ‘activism’ isn’t just what big-name activists do, it’s what we all do — at least, what we all can do, if we put our minds to it. There are more the more obvious forms that activism and advocacy can take, such as lobbying legislatures, for example, and testifying at public hearings, not to mention that old standby, organizing a demonstration; but there are hundreds if not thousands of ways in which each of us can influence government policy — everything from writing a letter to the editor of the local newspaper to blogging to organizing a poetry reading or an art exhibition. And as mentioned above, training is a crucial aspect of educating health care providers on gender identity and expression, so either engaging in training or pressing the powers that be (whoever and wherever they may be) to mandate training — is very important activism and advocacy work. Certainly, on a campus like this, there are countless opportunities for activism; at one university I spoke at some years, ago, for example, there’s one day of the year when students take chalk to the sidewalks of the quadrangle and do ‘chalking’ about whatever issues are important to them. With a constantly changing student population, transgender sensitivity training and education on a college or university campus will never be finished.
Last but not least, we as a community and a movement must engage a process of real and transformative social change; our goal must be not only to gain certain discrete health care benefits for members of our community — as important as those are — but to transform society’s understanding of gender. And that is why we must advance the day when we no longer have to rely upon the diagnosis of gender identity disorder (GID) to gain access to hormones and surgery. As I like to say, I do not have a gender identity disorder; it is society that has a gender identity disorder. And so we must all work together to de-pathologize transgender; we must move this society from a deviance model to a model that recognizes transgender simply as the manifestation of naturally occurring gender variance.
Of course, not all the members of our community seek such transformative social change; but it seems to me that we have a tremendous opportunity before us to actualize the transformative potential of the transgender movement by challenging and dismantling the sex/gender binary that is at the root of our oppression. And I would like to suggest that we do so as part of a larger movement for social justice that links with the struggles of people of color, immigrants (including the undocumented), the poor, people living with disabilities, people living with HIV/AIDS, and all those facing marginalization in this society. As the Mahatma Gandhi would say, we must be the change we wish to see in the world.
The task before us — to make health care accessible to all members of our community — is an enormous one, but lest you be daunted by the challenge, I would simply point out that the campaign for the transgender rights law enacted by the New York City Council in 2002, while involving hundreds of people, was led by a small group of just half a dozen people. As the celebrated anthropologist Margaret Mead put it so well, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Thank you.
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Pauline Park, Ph.D. (paulinepark.com) is chair of the New York Association for Gender Rights Advocacy (NYAGRA) (nyagra.com), president of the board of directors and acting executive director of Queens Pride House (queenspridehouse.org). Park named and helped create the Transgender Health Initiative of New York (THINY) and oversaw the creation and publication in July 2009 of the NYAGRA transgender health care provider directory, the first directory of transgender-sensitive health care providers in the New York City metropolitan area. She led the campaign for passage of the transgender rights law enacted by the New York City Council in 2002 and served on the working group that helped to draft guidelines for implementation of the statute.