Season 03: Episode 14: Connor McAlister Transcript

Queer Diagnosis Podcast

Season 03: Episode 14: Connor McAlister

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Interview

Zarya: Hey, welcome back to Queer Diagnosis. Long time, no see. If you haven’t heard about us before, in our first season we interviewed medical students. In our second season, we interviewed healthcare providers. Now, in our third season, we’re interviewing members of the LGBTQ+ community. I’m Zarya, my pronouns are she/her/hers.

Srihita: Hello, my name is Srihita. My pronouns are she/her/hers. Our guest today is Connor McAllister. Hello Connor, could you please introduce yourself with your pronouns?

Connor: Yeah. Hi, my name is Connor and I use he/they pronouns.

Zarya: Hi Connor! Connor is working on a lot of interesting things, so we have a very fun list of things to talk about. One of which is that you work with CRISPR.

Connor: Yeah, so I don't work directly on the scientific side. I work with a nonprofit called the Center For Genetics and Society which focuses on human biotechnologies on the ethical side. So while we don't work with the scientific side, we work primarily with legislation and advocacy related to the impact that CRISPR technologies could have on marginalized groups.

Zarya: And could you go a little bit into detail about how CRISPR can be used to target marginalized groups?

Connor: Yeah. To do that, you have to get into the idea of eugenics, which has a long history in the United States. Most people know the most popular idea or movement of eugenics being the Holocaust, with Adolf Hitler, and the eradication of Jewish people but also LGBTQ people and people with disabilities. Eugenics became popularized in the late 19th century/early 20th century when groups started to associate genetics with certain undesirable traits. Oftentimes, this was directed towards people of color and poor people. And this resulted in this marginalization through the "facts of science" which have largely fallen out of favor.

In today's times after World War Two, everyone kind of realized what a big mistake they made and started to veer away from that. But with the rise of technologies like CRISPR, eugenics has largely been brought back into the global sphere. And that's because CRISPR is, for those of you who don't know, a gene editing technology that essentially allows people or scientists to genetically modify people. You can also modify other things, but it's most commonly used for gene therapies now. There have been a few clinical trials being brought out where they will edit the genes of people, or certain parts of people's bodies in an attempt to correct genetic abnormalities. The issue that the organization that I'm a part of focuses on is heritable germline editing, which is the editing of the genetic makeup of embryos, to completely genetically modify the human being by completely taking out or replacing genetic material, which then gets passed down to every genetic offspring after that.

The problem is that most people and, understandably so, take a look at heritable germline editing and say, ''Of course, we should do this. Of course, we should eradicate illnesses and diseases. We should give everyone the best life possible." As a result, we get rid of the disabilities that would be caused as a result of such genetic abnormalities. But the problem is that disability, especially for those who are born with disabilities, is an identity. And we've seen that our lens of what counts as a disability has changed drastically over time. Certain things have become disabilities, while other things are no longer disabilities. A lot of people will know that homosexuality used to be classified as a mental illness in the DSM. People were diagnosed as homosexual and there were certain disabilities that went along with that. We of course, nowadays do not see that as a disability anymore, but that just goes to show how our lens of disability changes over time.

The problem with CRISPR is that people are essentially getting rid of things that make us different. This is a very slippery slope. It starts out with, "Oh, we want to get rid of terminal illnesses," where they will get rid of things that are just incompatible with life. This is a phrase used for fetuses that will not be able to survive outside of the womb. It's called being incompatible with life. They'll get rid of diseases that cause incompatibility with life and that turns into getting rid of diseases that shorten your lifespan, which then turns into getting rid of diseases that "impede your quality of life".

Zarya: How does it affect people who currently are living with disabilities? If they were to use CRISPR, it's kind of eugenics in its own way.

Connor: It really is. For a long time, people with disabilities have been marginalized. Until recently, it was almost assumed that anyone with a disability - physical or mental - will be institutionalized, gotten rid of, and put on the fringes of society. With CRISPR, if we get rid of a new disabled population, that removes any support that the currently disabled population will have and completely disregards an identity that these disabled people hold. It's essentially showing that we don't care about you and the identity that you hold. In fact, we're going to take away support as a result because there are not as many of you anymore.

This is currently happening in the UK. The UK has national health care. As a result, something that has been covered recently is prenatal genetic testing, which essentially is a quick and easy test that will give you some basic genetic results for a lot of common diseases or illnesses. One of those is Down syndrome. The NHS, which is the UK's healthcare system, oftentimes covers prenatal genetic testing for Down syndrome. As a result, the Down Syndrome population in the UK has plummeted because the vast majority of people with fetuses with Down syndrome are aborted. That is seen as the proper care to take because there isn't much of a support system anymore. Parents or prospective parents with a fetus with Down syndrome are not necessarily given as many options because it's seen as, ''Oh, we have the opportunity to not put a person with Down syndrome into the world. Let's take that.'' It shows that people with Down syndrome are not seen as worthy of life, essentially. It's even been put into legislation.

The UK has a ban on abortion after viability, which essentially means once the fetus can survive outside of the womb, we shouldn't abort it. But for fetuses with Down syndrome, you are allowed to abort at any point in the pregnancy. A woman with Down syndrome in the UK brought up the case to court in the UK, and said, "'Hey, this is a form of discrimination. It should be all or nothing essentially. You should not be treating fetuses with Down syndrome any differently than you treat another fetus.'' The Court said that she had essentially no case and that it wasn't discrimination at all, and that it "just is the way life is." So through the use of CRISPR and other gene editing technologies to eradicate a disabled population, you were removing support systems for these disabled people and removing an entire population of disabled people who many with disabilities want to exist.

Srihita: Can you talk a little bit about how you got interested in this field of work? Is it fair to call it bioethics? What led you to work in this nonprofit?

Connor: Yeah, I would consider it bioethics. What I specifically focus on is disability rights and bioethics, which is what I talk about the most but it is under a branch of bioethics. I am disabled, both physically and mentally. I took a class in my undergrad that was the philosophy of disability. It was the first time in my life that someone looked at me and said "just because you are disabled does not mean that you have inherent negative aspects in your life." It was the first time I was taught what's called the social model of disability, which many people aren't aware of. Essentially it says that you are not disabled because of an inherent difference in your body or your mind. You are disabled because of the way that society is formed around you. So one of the most common examples is, let's say, a person in a wheelchair. They are trying to access a building's entrance that has stairs but no ramp. According to the medical model, which is what most people know, the person's difficulty when entering the building is due to their mobility impairment. It's because they are unable to walk on their own that they cannot reach the building. What the social model does is instead says, "It's not because this person is in a wheelchair, it's because society is not catered to the needs of people in wheelchairs." It's the same with sight. I wear glasses. If I don't wear glasses, I can't see a thing. People don't look at me and say, "Oh, you're disabled because you wear glasses." It's because our society has decided what is and is not disabled based on how many accommodations we're willing to give people. This class was life-changing for me, and I was very lucky to study under Dr. Adam Cureton who helped develop the world of the philosophy of disability. I kind of fell in love with the validation it gave me but also the validation that it can give others. This new way of thinking disproves what so many have decided what disabled people are.

During the summer of my junior year in undergrad, I got put into contact with the Center for Genetics and Society. They have taken me under their wing. I've gotten to meet some incredible people, write some amazing things, and I'm just very honored to be in a very privileged place to not only have the lived experience of being disabled but have the academic experience of being able to study disability and what it means to be disabled.

Zarya: So I'm very glad that you brought up the point about the social model versus the medical model. A few months ago, Srihita was on her college campus and she sent a photo of a piece of paper that said disability seating or something along those lines. The thing is that was posted right in front of a set of stairs. So we thought that she was sending the photo in the chat to show the irony of the photo but it was something else, right Srihita?

Srihita: The word was completely misspelled, there was a letter missing but these signs were posted everywhere. And I was like "Oh my God, look how careless they've been with these signs." But there was also, an ironic aspect of the picture that I did not capture.

Zarya: I did not know about the social model versus the medical model. I've only been familiar with the medical model. I didn't even know that up until a certain year that wearing glasses was considered a disability. I had no idea of that, and actually, it makes sense. In the third grade, I remember that they asked "Do you have a disability?" and there was a form that we were filling out. I thought I didn't but they pointed out I was wearing glasses.

Srihita: Can you talk about how the Free Britney movement is related to the disability community?

Connor: Yeah, of course. I wrote an article about this when the Free Britney movement was becoming a huge thing because her conservatorship was finally going to court.

Zarya: Before we dive into that, do you mind telling us a little bit about what the Free Britney movement is?

Connor: Yeah, of course. The Free Britney movement centers around Britney Spears and this conservatorship that she's in. In some states, it's called guardianship, but we're gonna call it conservatorship for simplicity's sake. The conservatorship is sometimes held by an individual but most frequently, it's a group. In Britney Spears’ case, her father was named as one of the conservators, but it was also managed largely by a company. In this conservatorship, she was forced to sign away her rights as an individual. In this conservatorship or any conservatorship, a group or a person can go to the courts and say, "Hey, I can prove that this person is not able to take care of themselves." In some cases it's valid, like with people with severe disabilities or multiple support needs, they can say, "Hey, they can't make all decisions for themselves. I need to be the one to make decisions for them." Even able-bodied people have that in a power of attorney, so if you go to the hospital they're able to make decisions for you. It's a preparedness thing where instead of you having something happen to you where you need a person who can make decisions for you, it's just a given that this person is not able to make any decisions for themselves; medical, financial, or personal.

So Britney Spears was put under this conservatorship. I can not remember how many years ago but it was over a decade. It was in the early 2000s that this happened. This was after, a lot of people will remember, she had her "breakdown" and shaved her head. She was put into this conservatorship at that time. Since then, regardless of whether or not you think that it should have happened, she has improved. The vast majority of people agree that she should no longer be under this conservatorship. The problem is that when you're under conservatorship, you have little to no rights to overturn that because technically, you've been proved in a court of law, that you're not able to take care of yourself. Once that conservatorship has been put in place, it's very hard to get rid of it. Britney Spears finally got enough traction to essentially try to get out of her conservatorship because she said that she was being abused or financially abused by being forced to work. She was being forced into certain situations. She was forced to go to therapy out in public as opposed to having the therapist come to her home. So, she was forced to out in the public against her will. A whole bunch of messed-up things happened to her. She was quoted as saying she “felt isolated, medicated, financially exploited and emotionally abused." When Britney's longtime fans found out that this was happening, they rightfully got very upset.

What this showed was that unfortunately, conservatorships and guardianships are not rare things. Wrongful conservatorships are not rare. It's because, so frequently, people with disabilities are often not regarded as being in their right mind of any kind, which goes back to what even is being in your right mind. Oftentimes the court of law will side with able-bodied people when they try to prove that a disabled person is not capable of taking care of themselves.

So the Free Britney Movement, whether people realize it or not, has a lot to do with disability rights because it shows that this could truly happen to anybody. Britney Spears was forced under a conservatorship for 13 years. For 13 years, she was denied the right that most people should be entitled to. It goes to show that she's lucky that she is as rich and famous as she is. She was able to get out of that situation.

A lot of disabled people and disabled individuals do not have that same "right", or the ability to get out of these situations because oftentimes disability is in line with poverty. Even those who are on social security and disability checks are being forced to live under the poverty line. How is a disabled person who cannot work with no money going to be able to raise the legal funds needed? The Free Britney Movement goes to show just how ingrained in society taking away the rights of disabled people is.

Zarya: Yeah, I will say I didn't know much about the conservatorship. I didn't even know that Britney Spears had a conservatorship until there was the documentary that came out. Even then, I still didn't fully understand it. I think it has shed awareness at least. I had no idea that conservatorships existed beyond Britney Spears. I thought that this was a very rare situation. I think it's shocking that there are still conservatorships that exist. I'm not sure how often conservatorships take place but I'm glad that there was at least Britney Spears to be a representative, I guess temporarily, for that situation. So Connor, can you tell us about any healthcare experiences that have stood out to you as someone who's part of the LGBTQ+ community?

Connor: Yeah, so I am transgender. I'm transmasculine. I was born in a female body. I have since transitioned but getting health care when transgender is already hard enough. Getting health care when transgender and disabled is infinitely harder. Being medically disabled, I require healthcare. Many transgender people will just forego health care because receiving health care while transgender is so hard. It is entirely legal for doctors to deny you care on the basis of being transgender. I've had a friend of mine who had to see a new doctor and the doctor outright denied filling his prescription because he did not want to feed into "his transgender mindset." And it's legal for him to do which is just not okay. But I have had doctors not be educated, which is the hardest part. There's a difference between, bigotry in the medical world, and just sheer ignorance. It's not as common that a doctor is just going to look you dead in the face and say "get out of my office" and call you a slur. But, it's so common that doctors do not know how to properly care for transgender patients whether that be from the emotional side.

I just recently got my first pap smear and I was very lucky that I had a community that knew of a doctor that I could go to that was going to respect my gender identity and knew what going on testosterone while being female-bodied looked like and knew how to ask for permission when doing medical procedures that may have been sensitive for me. I was very lucky that I had that experience. I've known so many people for whom getting a pap smear just in general is traumatizing, let alone getting that in an unsupportive environment. I will never forget when I first started testosterone and I had been on estrogen-pill birth control since I was a teenager. And when you go on testosterone, you don't want to be putting estrogen in your body, of course, because those two will cancel each other out. It can impede your transition and just all around make you not feel good. And so I needed to go on different birth control.

I went on the Depo shot for a bit because that's just progesterone so it's not going to affect the testosterone as much. I had terrible side effects. So I went to see my primary care physician and I said I want an IUD. I did my own research, which I'm very used to doing and I came to the conclusion that an IUD was going to be best for me, just a copper IUD, no hormones, but still the birth control. And my doctor looked at me and said, "No, why would you do that?" And I said, "Well, because I need birth control. I don't want to get pregnant." I, first of all, don't want kids. Second of all, I'm on medications that if I get pregnant, will be catastrophic in terms of health. And she goes," But you can't get pregnant." And I went, "What?" And she goes "Yeah, you're on testosterone so you can't get pregnant," which just isn't true.

So when you're on testosterone, you do stop your period after about 6 to 12 months. But, there have been many documented cases of transgender men on testosterone getting pregnant. It's because testosterone is not a form of birth control. My doctor is the sweetest can be and I love her. I continued to see her after this because she was willing to learn, but if I had listened to my doctor, I could have gotten pregnant. And that just should not ever be the case. I should not be the more medically educated person in the room. I was getting my bachelor's degree at the time and it wasn't even in medicine. It was in philosophy. So I should not be the most medically educated person in the room when it came to my medical care. Unfortunately, for transgender people, you are required to. I've had to read medical journals to figure out what effects certain things were going to have on my specific body.

While I understand that transgender people have existed and been documented for thousands of years, there have been documented cases of transgender or gender non-conforming people, it's only become recently a publicly realized identity where it's become both a different thing and also a recognized thing.

I recognize that it's impossible for a doctor to know everything about every marginalized identity but I am still learning that they have not updated their curriculum at all in medical school. I have talked to newly graduated medical students, now doctors, who said that they did not receive a single word of information on transgender care for patients which should not be happening. Diversity training is so important in the medical world. To completely deny an entire segment of the population, it’s even an issue in research. Unfortunately, I can count on both my hands the number of articles I've read that have to do with certain niche comorbidities of my conditions with being transgender. I remember signing paperwork when I first went on HRT to start testosterone that said that they don't know what was about to happen to my body. It's not only just doctors not knowing, but it's also researchers not wanting to research and so this has led to this perfect storm of transgender people not being able to receive the care that they need. People aren't changing fast enough.

The curriculum isn't changing fast enough to keep up with the fact that a noticeable percentage of Gen Z or even Gen Alpha, identify as not cisgender, whether that be transgender, nonbinary, or gender non-conforming. There is a vastly growing population of people who aren't just suddenly becoming transgender, but now have the words and the experiences to identify with who they are, and be able to receive treatment as a result. For the medical world to not provide education to their doctors or for doctors that have already graduated, to not seek out education for themselves [results in] so much mistreatment that I know personally has happened to me. It is happening to those around me and god knows happening to everyone else.

Zarya: Thank you for speaking so passionately on this topic. This is exactly why I wanted to change it up for the third season, shifting away from people who are explicitly physicians or medical students. Based on our conversations with medical students from the podcast, the onus is on them to make initiatives to include or acknowledge queer people in their curriculums or create queer cases for patient experiences. It is upsetting that it seems there's no ripple effect to that. It might just be in one institution, maybe just for that year. It might not progress beyond that. That is something that I think needs to be improved upon, both on behalf of institutions as well as medical providers who are already out there and already out of medical school. I don't think that the learning ever really stops. Especially what you said about your doctor telling you... doctors are supposed to be trusted and people that you can talk to, so it is upsetting. Thank god that you knew better. I think that is a learning experience for a doctor that should be a little bit better known. You might not be the only patient that they'll see but if you hadn't said something, what else could happen? That is a concern. So, thank you so much for that. So Connor, if you could turn back time and talk to your 20-year-old self, what would you tell them?

Connor: Gosh, my 20-year-old self. When I was 20, I had just started testosterone. And I was very impatient and very scared and very ignorant. I had done as much research as possible, but I couldn't possibly know what was going to happen afterward. If I was talking to my 20-year-old self, I would say, keep reading. Keep continuing to learn, because there's still so much out there. Make sure you advocate for yourself. When I was 20, I was still very new to the whole transitioning thing, I'd only ever socially transitioned. So keep advocating for yourself, because no one's gonna listen to you until you convince others otherwise. You have to be the one that listens to yourself and learns about yourself and then shares that with others. Keep doing some introspection, keep advocating for yourself, and keep advocating for others because it's what we love to do. Keep learning.

Zarya: I know that was a message for your younger self. I'm gonna take that as a message for me. I liked it very much. Thank you so much. So that is about as much time as we have but thank you so much for joining us, Connor. For our listeners out there, Connor is... Are you available anywhere on Instagram or media? Where we can follow you, Connor?

Connor: My Instagram handle is @definitelynotbroccoli.

[Laughter]

Srihita: Oh, I thought that you were saying that it's not broccoli. I didn’t think it was.

Connor: No, my Instagram handle is three words: ‘Definitely Not Broccoli’. There's a long funny story about that that we don't have time to get into. If you follow me on Instagram, I am always reposting news articles about LGBTQ news. If you want to stay updated, that's a way you can stay updated. Instagram is the main thing that I have. If you want to check out the article I wrote on the Free Britney Movement, it's on the Center for Genetics and Society's website which is geneticsandsociety.org. We also have a newsletter that we released if you want to stay up to date on bioethical news.

Srihita: Thank you, Connor.

Zarya: Thanks for listening. Please consider making a donation to the Queer Diagnosis Scholarship Fund to connect students with much-needed financial support as a means of guaranteeing their academic success, particularly those students who identify as members or advocates of the LGBTQ+ community. Read the transcript for this episode at QueerDiagnosis.com. Queer Diagnosis is

Jameson: Jameson Coleman.

Srihita: Srihita Mediboina.

Katya: Katya Shemelyak

Zarya: And me, Zarya Shaikh. Music is composed and provided by Cara Dugan and Adam Fredette. This podcast is supported by listeners like yourself. Our Patreon is patreon.com/QueerDiagnosis. Rate and subscribe to Queer Diagnosis wherever you like to listen.

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This transcript has been edited for clarity. This text may not be in its final form and may be updated or revised in the future.