Interview with Riley

In Interview on December 9, 2009 at 1:19 am

An interview with Riley Johnson about his involvement with the trans-friendly gyne-care program at the Chicago Women’s Health Center and other things . . .

Interviewed by Bethany

B: First I want to ask you what other projects you had been involved in or how you came to head up this project. Were you involved with the Chicago Women’s Health Center already? Or were you just . . .

R: I was sort of limitedly involved with the Health Center. I dated somebody who was a therapist there at one point. She got me connected in one of their first trans panels where they basically had trans people come in and provide our basic experiences of health care. What we were getting into and all that.

B: What year was that . . . ish?

R: I think ‘04 or ’05. They had been seeing trans patients for a long time. They were just starting to rethink and sort of be mindful of what they’re doing and put it out to the public in a really expansive way. I think TGAP in terms of work-wise had kind of spurred out of that in the sense that I came back to Terri Kapsalis who is somebody that I met at that first panel. She asked me to come speak at her class a couple times in that time span (’05 to present). I was seeing this pattern where I wasn’t getting gyne care, my friends weren’t getting gyne care – I had friends who were butch or lesbian identified and they weren’t getting gyne care. It wasn’t necessarily that providers were being bad to us. I mean there were some obviously who were being bad. But there were also a lot of us who weren’t going. What I originally asked her [Terri Kapsalis] was “is there a way that we can bridge that gap? [Can] we make it so that it’s a manageable thing for people to do – to go in and get care?” I think that part has been fairly successful. We built in a buddy component to it so if people want me to be in with them for any part of the exam they can choose that. But realistically what ends up happening thus far is that once – I have personal connections with a lot of people in the trans community here in Chicago and if they know that I’ve vetted somebody, or that I’ve trained them, then they don’t need to know more.

B: That’s good enough. Right.

R: They are pretty much taking my word for it and they know that I don’t put up with anything.

B: Is TGAP . . . what exactly is that?

R: It’s a joint project with – I, back in 2004, I started a project called the Queer Peoples Health Collective.

B: Ok, and that is the website that I saw.

R: Yeah. That was born out of my frustration more then anything else. I, in early 2004, I had a hysterectomy and was not well prepared in terms of my own language and knowledge about it. I prepared myself very well for my other surgery related to transition but I just was not well schooled about that. I had a lot of complications with mine and I was in the hospital for five days. And had a hematoma – about a two by two space or close to it. It impacted my hemoglobin in a big way. You are supposed to be between like thirteen and eighteen and I started when I first got to the hospital I was at thirteen or fifteen and I got all the way down to a seven. They were like we can’t . .

B: I don’t know what a hemoglobin is.

R: It’s this internal blood thing. Your blood has platelets, red blood cells, white blood cells, and plasma – these different sorts of sets within the blood. Hemoglobin is an essential substance in your blood and in my case, like if people are anemic, they are sometimes pretty low in hemoglobins. If they are really anemic they may get blood transfusions. In my case I got three. The nurse at the time said that she had been in there for twelve years and she’d only seen people get two transfusions at a time.

B: Wow.

R: I was pretty far-gone apparently. I was very much out of it and it impacted me. I could not have made good decisions for myself in the state that I was in. I was lucky that I had a partner and friends who were really advocating for me and making sure that I got what I needed and all that. Then I was on bed rest for two months. That process was really kind of hard because I tried to reach out to other trans men about it and their reactions were either “you need to man up” like “don’t talk about it” or a lot of them had had laparoscopic hysterectomies where their reactions and their experiences were completely different from somebody who has a full surgical one where you’ve got abdominal muscles interacting in there. There is a whole other set of expectations. There are a lot more complications with the non-laparoscopic version. There weren’t a lot of people who had the full version that wasn’t laparoscopic, and those that had were in the “man up” category. I was really kind of without a lot of support from the trans community. I tried to reach out to sort of traditional women’s versions of hysterectomy support. There was a website called hystersisters.com which is like the big, kind of like the starbucks of . . .

B: Like the mainstream.

R:  . . . hysterectomy support. I’ve pretty much always tried to be upfront if I’m gonna be interacting with somebody in a support role or in a friendship role or whatever. I feel like if I’m not honest with them, then we’ve already started off on the wrong foot. So I said to people there, here is the situation: I’m socially male, I function as a man, I live as a man – that’s not . . . that’s not the problem. The problem is that my biology has made this [the hysterectomy] a necessity for me. I had a hysterectomy and I’m hoping that my social role as a man does not get in the way of me getting what I need in terms of support for my recovery. What basically happened from there was that once I came out as trans they pulled my access.

B: Wow.

R: So I didn’t have the access to ask questions – I didn’t have the access to search for anything. They directed me to the men’s (husbands, boyfriends) area. Which needless to say did not fit. Needless to say I was really up a creek. I didn’t really have much in the way of support or venues to turn to. At first I believed the trans men’s version of  “yeah you gotta man up about it” or whatever and then I realized . . . that’s such a crock. It really is. We need to be able to be conscious consumers of health care. Our gender doesn’t play into that. I mean obviously it plays into that, but it shouldn’t stop us from getting good care.

B: Yeah.

R: So I started Queer People’s Health Collective. Which is a bit of a misnomer. It’s not anybody else – just me. I do have people who are interested who are on the horizon. What that does..er the goal is to create printable web pamphlets basically. PDFs, documents, Word docs and things like that. For both LGBT queer and trans clients as well as their providers. So if you’re going into – lets say you have to go in to go to a specialist and you are concerned about and you are concerned about your provider seeing whatever, your surgery scars or whatever the situation may be. My goal is to get a pamphlet for that so that you can say in the middle of your visit “this is what you need to know about me and this document will tell you more than what you currently know.” A lot of people are getting a bit better in terms of the training that they are getting. But it is still a big kind of crazy world out there. My goal has been to not only increase my own personal knowledge about things but then also to sort of spread that. To spread the idea of people being active consumers and active . . . “consumer” that phrase makes it seem like it’s just a one-way activity. What I’m envisioning is something where people are advocating for themselves- they are making educated decisions and they are really being active in the process as opposed to just listening to what their doctor tells them and doing exactly what that is.

. . . more on the interview with Riley to come!

Check out:

The Queer People’s Health Collective at: http://users.resist.ca/~qphc/

The Chicago Women’s Health Center at: http://www.chicagowomenshealthcenter.org

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