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Interview

Beyond the Basics: Gaines Blasdel on Genital Surgery, Community Wisdom, and Trans Health Justice Today

July 9, 2018

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Gaines Blasdel

Gaines Blasdel (Courtesy of of positiveexposure.org)

Even as it has become easier for some transgender people who wish to have surgery as a part of our transitions to get such services, the basic right to health care remains out of reach to many. And many who are able to access care are finding that experienced providers may be overloaded while newer providers have just begun learning the specifics of trans-competent care. In an unprecedented action, trans people who have had bottom surgery came together this year through an open letter calling for the accountability of surgery providers. As a trans person who has supported friends and partners on their surgical journeys (and who is rather obsessed with the need to improve trans people's access to quality care), I was eager to speak with Gaines Blasdel, who coordinated the letter.

JD Davids: Hi Gaines. Thank you for talking more about the open letter about genital surgeries. Let's start by discussing how that letter came to be. And how is it doing?

Gaines Blasdel: Sure. I'm a person who's had genital surgery. I participate in a few support network forums that have been really important in my process from when I was gathering information about surgery, to now, in recovery and giving-back mode.

I have participated in those forums for five years or more now, both in person, at conferences, and online. I've seen the conversation happen in several places on online forums, where people are trying to information-gather, and they realize that there's not data, you know? Especially in the context of the U.S., there is not good data about which surgeons are better. A lot of the teams haven't published any data, and the data that they have published is not really an overview of their practice.

People are frustrated, and they start to say, "Well, we should back-end hack together this information and try to figure out how to make this into actual information that we can base our decisions on." I was watching those conversations happen cyclically.

For example, there was a specific conversation about a surgeon who certain people in the community believed was misrepresenting their complication rates. There's a published article of that surgeon's practice. People who had been to that surgeon were like: "I wonder if my complication is even represented. Because I feel like I didn't get follow-up care, and I did really doubt that it's recorded."

So [the letter] was based on the sentiment that I have seen bubbling up. In that group, we were like, "We should do something about this."

There has to be collaboration. Patients aren't surgeons. There are good reasons why there's a separation between the role of doctor and the role of advocate or patient. The World Professional Association for Transgender Health (WPATH) felt like the venue through which it could actually be an olive branch, or an invitation to sitting together, as opposed to a threat.



Related: Trans People, After Genital Surgery, Urge Oversight



JD: Can you tell us more about WPATH?

GB: WPATH is a body that advocates for the right of trans people to treatment and the right of providers to treat trans people. It's an international body, so there's a lot of different contexts for trans health, trans surgery across the globe. They write the standards of care that are meant to be an international guiding document for best practices in trans medicine.

Right now, they're writing Standards of Care 8. They've been writing Standards of Care since the '70s, so there have been many versions of this document. Of course, lots of things have changed since the '70s, so the standards have changed with it.

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A lot of people within WPATH are trans people who have gotten in there to change things and to advocate for the community. And a lot of cisgender professionals in WPATH have spent their whole career working for the needs of the community in various ways.

So, Standards of Care 8 feels like a chance to take the momentum that is within WPATH for modernizing things, to make things fit to the context of the reality, and just to advocate for people who have had this experience of having trans surgery that feels misrepresented by providers -- and not necessarily out of malice. The provider's idea of a successful surgery is "no infections" or "didn't have to go back to the operating room."

JD: How will patient input and advocacy pressure change WPATH's Standards of Care? Can the best of the providers just figure out how to get it right on their own?

GB: One of the current members of the board of directors of WPATH, Loren Schechter, M.D., who's a surgeon, co-wrote with Stan Monstrey, M.D. Ph.D. -- who's a past president of WPATH and sort of like a godfather-figure surgeon to a lot of the other surgeons and who's done a lot of amazing research -- a proposal for surgical training. But their idea of minimum collected outcomes is, very concretely, things that would happen immediately after surgery that are medical. You know, like, infections, take-backs to the operating room, things like that.

There's nothing that would be a patient-reported outcome, much less a patient-defined outcome. There's nothing about orgasm. There are surgeon-defined complications -- that's their training. That's what they're thinking about, what they have control over in their scope of practice. So, it makes sense.

But in order for it to be a procedure that serves the people who are asking for it, we the patients need some patient-defined outcomes in order to have data that actually informs our consent to the procedure.

JD: How would you describe this moment more broadly in trans health? What else are people talking about, in support groups, and moving forward, as advocates, to improve people's opportunities to have assistance in the best possible health?

GB: The basics [of trans health care] are a human right, and they're becoming closer to universally available -- you know, the basics of any trans-affirming medical care, any hormonal treatment, any ability to change your name and gender regardless of medical treatment, workplace nondiscrimination laws, stuff like that. I predict that the next progressive Democratic-led government is going to institute national stuff that's just going to end that question.

But what's beyond the basics? So, you have any health care. Do you have mental health care? Do you have good mental health care? Do your cis mental health practitioners understand the peculiarities of treating a trans population? If they want to learn more, do they have access to spaces to do that?

It's a moment beyond hormones. Yes, getting people access to hormones is great. And also, there's just so much more after that, after us being allowed to transition at all.

We are going to need to really reckon with the trauma that we've experienced as a community that's been unaddressed. There's such a sense of scarcity, about stuff getting taken away. We may feel we can't be angry about whatever we're experiencing because we just need to hold on to these basics.

Once we're not afraid of the basics being taken away from us, what does that unlock in us to work through that past of real harm?

JD: And the health and medical implications of trauma-fueled illness and other things.

GB: Oh, yeah. And surgery is controlled trauma, even in the best circumstances -- which is why there's post-op depression; this is a common complication of surgery.

JD: It reminds me in some ways of the first decades of the HIV epidemic, when people were on their own or sharing information in support groups and PWA [People With AIDS] groups and ACT UP, figuring out what to do and then turning around and making demands on the system for better research and better assessments of what worked -- things like more research in opportunistic infections and what made a difference in people's quality of life.

GB: Absolutely. The specific parallel with HIV, I think, is like when there were protests to have women's symptoms added to the definition of AIDS, [saying that] if you get out of your laser focus and listen to people, then you'll see that there's actually more there. That's not, again, malice; it's like a larger structural issue of study design around enrolling women and stuff like that.

I think it's similar here. All of the surgeons are doing something that is not necessarily winning them any favors in their professional communities. They're all doing this because they want to help people, and because they're interested in trans health. It's just that the structure around them is not enabling them to do the kind of care that we want to see in the future.

JD: Recently, a friend of mine was looking into top surgery, and they were looking at different procedures, looking to retain nipple sensitivity, and came to realize that all that means is that you can feel something -- not necessarily that, if it was pleasurable before, it will still feel pleasurable. That could include the "something" that you feel feeling kind of awful, right?

GB: Absolutely.

JD: What are the opportunities for and obstacles to bridging trans identities, or surgical interventions, or desires, when it comes to trans men, trans women, non-binary people? For now, the same teams -- which could include urologists and OB/GYNs, in addition to surgeons and others -- are doing both transfeminine and transmasculine bottom surgery. So, in the case of wanting to bridge different trans folks, one thing is that often it's the same providers. What else did you tap into, or what did you figure out, in your groups?

GB: I'm a trans man; the procedure I had is specific to trans men. A lot of the early people I was talking to were trans men. I also participate in a couple of forums that are with trans women, but they're very different. There are lots of secret groups that are more locked down for people who have surgery dates.

Some of the challenge is just that people are secretive and protective. You know, it's such a highly personal thing. Many people are not openly trans identifying -- and careful about how they participate in trans information gathering or in trans community. And then, to add onto that something that's private medical care, getting the surgery -- people are not necessarily out in the streets, asking each other, or claiming that they've had surgery.

It's been amazing since the letter came out, in terms of just how many different people have been in contact with me and learning that this is happening everywhere. I often find that with trans health stuff in New York, someone's doing the same exact thing in San Francisco and I just didn't know about it.

So it's been both awesome -- it's like, this is the zeitgeist -- and heartbreaking to hear that people are having these issues everywhere.

Some people like to point at particular surgeons, [saying] we know that they're not good because we fix a ton of their complications. Sure, some surgeons are worse than others.

But there are avoidable, bad outcomes everywhere. It's the academic medical centers, just as much as it's the private breast and body and plastics people with big dollar signs in their eyes. There are avoidable, bad outcomes everywhere.

And we can't go one by one, surgeon by surgeon, saying, "Oh, you're OK," or, "You're bad." We have to put in place some structural stuff that stops the corner cutting.

JD: How much of this moment is also about expansion in trans people's access to gender-appropriate care and surgery? How much of this is that the demand has increased and the system isn't able to meet the demand in a quality way?

GB: It's both. In Europe, where these surgeries have been performed for decades and decades, it's actually much more normalized for people to get trans surgery because they've always had access. And access in these contexts has had other pros and cons with it, like having to have genital surgery in order to change your name and gender marker. Sweden just gave reparations to trans people that they had sterilized in order to transition.

But surgery is much more normalized there. It's more common because people who participate in the trans community know other people who have had it. So there's more possibility modeling and knowledge of the reality of what it looks like because there's been more access.

There might be more trans people coming out. But access is expanding -- so people who have wanted surgery forever and thought that they could never achieve it, could never save $20,000, could never save $150,000, are able to get it through insurance. Right now, the insurance map of states that require coverage looks like gay marriage in 2013. It's the same sort of almost everywhere sensation.

And then, that has a wave effect where, as more people get surgery, there are more narratives out there, [so] people are like: "Oh, this is possible. I never saw it as a reality, and now, I see it as a reality, and it feels like something I can want now." So I think it's a lot of factors together.

But certainly, the insurance coverage aspect has impacted the immediacy of the expansion and the quality issues.

New York and California are the only places that I know of in the U.S. where there's more than one option of genital surgeon in the state, if there even is one in a state. So, a lot of people who have Medicaid or just have limited means, limited support structures, have one option. And two options aren't actually that much better than one option.

People have this very longstanding desire for something. It's finally achievable. But they have one option, or very limited options. So, it's sort of a you-take-what-you-can-get environment. Unfortunately, I've heard that echoed from surgeons before, like, "Oh, well, we didn't even used to make sensate clitorises, so now at least we try."

There's this kind of -- it feels really un-medical to me -- sense of, "Oh, well, at least we're giving you something." Whereas medicine is about innovation and standards evolving over time, right?

Several people who have contacted me said, "Thank you; I can't be public about my issues," or "I have to be very delicate about my relationship with my surgeon, even though there are things that weren't good, because I don't have another option, and I need revision surgeries."

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