Last updated November 3, 2011. Both statistics and excerpts are now available.
Background on the Survey:
Responses collected from 9/15/2011 to 10/15/2011. Survey link and details were posted across Tumblr, Transyada.net, What is Gender?, and Laura’s Playground. Purpose of the survey was to gather information about health from the genderqueer community and supplement a project for my college health class (full essay from this class with expanded sections coming soon).
Total respondents: 196. 180 out of the 196 respondents checked a box at the end of the survey giving “permission for excerpts (anonymous attribution) from your text entries to potentially be quoted in the finished project”; some of this material will be quoted on this page in the non-statistical portions of this data where write-in boxes were available.
This survey had been created with the purpose of collecting data on experiences of health care of genderqueer and non-binary identified individuals. “Genderqueer” is being used here in its largest umbrella sense; there are many related identities and not all who filled out this survey may use genderqueer alone to describe their identity or presentation. Anyone of any gender identity and orientation could take the survey, though I was particularly looking for those who identify themselves as genderqueer or related identities in some way because of the focus of this survey.
STATISTICS FROM THE SURVEY:
1) Basic Info / Sex / Gender Identity / Orientation
AGE:
All 196 respondents listed an age, the average age being 23, the median 21, and mode at 16. Youngest respondent was 14, oldest was 64.
COUNTRY:
All 196 respondents listed a country. Residency statistics: USA (152), Canada (18), UK (10), Australia (4), Ireland (2), South Africa (2), Turkey (1), Netherlands (1), Norway (1), Israel (1), Japan (1). (1) respondent listed a continent (North America), and (1) respondent listed two countries (USA / Mexico).
SEX ASSIGNED AT BIRTH:
All 196 respondents checked a box here.
Male 31 16%
Female 159 81%
Intersex 0 0%
Prefer not to state 6 3%
Other 0 0%
SEX IDENTITY:
This option was a write-in field; prompt was “sex you identify with, how you see your body - may or may not be the same as sex assigned at birth.” 156 out of 196 respondents wrote in some response in this field. This section produced some of the most varied and interesting responses of any of the fields and it is worth noting that sex identity did not always ‘correspond’ with an associated gender identity.
Most common responses: female (56), male (24), genderqueer (8), neutrois (7), androgyne or androgynous (5), both or both female and male or male and female bodied (4), none or neither (4), no idea (2), female-ish (2), and CAFAB (2). Many sex identity responses involved a combination of terms, such as “primarily female”, “third-sex / feminine androgynous”, “sexqueer female”, and “genderfluid androgynous”. Some respondents referred to their sex characteristics to clarify or to challenge generally accepted meanings, such as “Male: meaning I call my vagina and associated organs “male”, “Male but with a vulva/vagina instead of a penis”, “CAFAB; person with a clit”, and “Flat chested female body? not that I have that right or anything :(“. Other sex identity terms included female-to-male, FTX, unknown, ?, human, non-binary, and epicene.
GENDER IDENTITY:
People could select more than one checkbox, so percentages may add up to more than 100%. The Other field allowed for a write-in response.
Genderqueer 128 65%
Non-binary 89 45%
Androgyne 58 30%
Neutrois 29 15%
Agender 37 19%
Bigender 13 7%
Trigender 3 2%
Pangender 12 6%
Intergender 6 3%
Gender fluid 83 42%
Transgender 51 26%
Trans man 16 8%
Trans woman 13 7%
Transmasculine 29 15%
Transfeminine 11 6%
Demiguy 9 5%
Demigirl 7 4%
Man 18 9%
Woman 27 14%
Questioning / unsure 32 16%
Other 31 16%
Write-in responses under Other included: genderweird, femme demiguy, epicene, trans*, genderother, multigender, chapstick femmequeer, diva boi, pansy, cuntboy, genderfierce, and stone butch.
SEXUAL OR ROMANTIC IDENTITY:
People could select more than one checkbox, so percentages may add up to more than 100%. The Other field allowed for a write-in response.
Heterosexual 11 6%
Homosexual 29 15%
Bisexual 24 12%
Pansexual 65 33%
Asexual 53 27%
Demisexual 22 11%
GrayA 14 7%
Girlfag 9 5%
Guydyke 1 1%
Queer 90 46%
Androphilic/romantic 13 7%
Gynephilic/romantic 11 6%
Polyamorous 41 21%
BDSM / Leather / Kink 45 23%
Questioning/unsure 20 10%
Heteroromantic 5 3 %
Homoromantic 7 4%
Biromantic 5 3%
Panromantic 42 21%
Aromantic 11 6%
Demiromantic 10 5%
Gray-romantic 10 5%
Other 25 13%
Write-in responses under Other included: monoamorous, polyromantic, transromantic, sapio-romantic, quasiromantic, omnisexual, homoflexible, label-free, bicurious, and biemotional
PREFERRED PRONOUNS:
People could select more than one checkbox, so percentages may add up to more than 100%. The Other field allowed for a write-in response.
Masculine (He/Him/His) 65 33%
Feminine (She/Her/Hers) 64 33%
Neutral (They/Them/Theirs) 80 41%
Spivak (Ey/Them/Eirs) 6 3%
Ze/hir 31 16%
Other 40 20%
Write-in responses under Other included: “masculine, feminine or neutral depending on the situation”, “it/its”, “Ze/zan/zans”, “Co/Co/Cos”, “I just let people choose what they want”, “Ne/nem/nir”, “ It depends on the gender I present on a day-to-day basis”, and “anything BUT gender neutral.”
2) Therapy
Have you sought a counselor for concerns related to genderqueer / non-binary identity?
People could select more than one checkbox, so percentages may add up to more than 100%. The Other field allowed for a write-in response.
Yes, from a professional (psychologist, therapist) 53 29%
Yes, in a group therapy or support group setting 22 12%
No 115 63%
Other 20 11%
Write-in responses under Other included: “Sought support for being trans but not for non-binary identity.”
“I’m in therapy for other, personal reasons, and we end up discussing my gender
from time to time.”
“Made appointments and got too nervous to go/couldn’t pay.”
Briefly describe why you sought counseling and if your needs were met:
O., 23: “I sought counseling because I want a hysterectomy and I knew that I would have to see a psychologist before this could happen. My needs were not met.”
A., 20: “I was very confused and it was driving my usually quite consistent states of occasional depression to new, blacker lows which frightened me in their severity. I was worried that I might hurt myself or people around me so [I] sought counseling to untangle some of the nasty knots that kept me down there.”
J., 19: “I was just really emotional and was confused about why. There turned out to be a conflict familial and self-identity. My needs were definitely met. Helped me be as proud as I am today.”
S., 64: “I began my transition in 1991 when there was much less dependable information available than there is today. I wanted a surgery letter and to get that, I had to enter into counseling at a local Gender Clinic.”
B., 29: “I was becoming more and more depressed and dysphoric. My needs were not met due to binarist and cissexist attitudes from my therapist and the trans-oriented health center I was referred to.”
What were the most beneficial aspects of your experience?
G., 25: “Discovery of the community, more than anything else, was the most beneficial result. To have a safe place to go to, just to talk about these gender issues and be taken seriously.”
A., 31: “Mostly just being around other people who were/had also struggled against conventional ideas of gender.”
C., 27: “She framed my identity as legitimate. She helped me talk through my concerns in a safe space. She de-emphasized labels and suggested I could like whoever I liked and be whoever I wanted to be. She also suggested I join the LGBTQ support group at the university, which she facilitated. It helped me connect to others, form friendships, and find acceptance. Recently, I suggested creating a support group for trans* and gender-queer people, and my counselor actually listened and created it this semester!”
T., 24: “I was hospitalized for mental health concerns when I was 20 years old. I wanted to address everything that was bothering me. Unfortunately, the psychologist who evaluated me didn’t listen to me. I said “I hate being female.” He said “So you want to be a man?” I said “No. I don’t want to be male, either.” He then told me about how I would one day be glad to be female when I decided to have children. I haven’t sought out counseling since.”
J., 21: “My psychologist is queer as I am.”
Any negative aspects of your experience? Explain, if so.
M., 21: “I got no benefits from the first therapist because I spent so much time educating her that there was no time to do my own liberatory self-work around gender. I also put so much energy into teaching her, explaining/defending myself, etc. that I did not get to actually work on my immediate concerns (like my returning eating disorder) and I continued to starve myself and damage my body in the mean time. Even if she had finally let up and given me some time to talk about my eating disorder, depression, and anxiety, I wouldn’t have been able to truly and honestly discuss the way those things relate to my experiences as a trans person because she and I had already built such distance around that topic. The therapy group left me feeling alienated by my trans and genderqueer peers and mentors. I continue to feels isolated by trans and genderqueer spaces and to avoid those spaces in general no matter how badly I think I might need or want them. Those groups made me feel like I wasn’t “trans enough” because I am not a masculine, slender trans man or a perfectly “androgynous” (read masculine) slender genderqueer.”
G., 18: “I don’t feel able to discuss my non-binary identity for fear of the therapist deciding I’m confused/whatever and not getting recommended for top surgery.”
E., 22: “It felt like all I was doing was educating my psychologist about non-binary identities instead of receiving the support and feedback I had hoped for.”
C., 21: “One time in support group another participant told me that I needed to put more effort into looking androgynous since I “never presented as anything but female.” This made me cry since I felt erased as a femme nonbinary person.”
V., 26: “Both times, I felt like I would have to explain about non binary people. Both of the counsellors, even though they were both supposed to be very educated in the aspect of gender identity had little to no knowledge about people who are non binary.”
Gender Identity Disorder: The trans* and queer communities have mixed opinions on GID overall - please share any of your feelings on or experience with GID diagnosis here:
C., 24: “I don’t feel that I have the disorder, I feel the society at large does with accepting and embracing those whom are different.”
C., 51: “GID? I have it. Have had it since age 10. Mixed feelings, no. I’m proud to be trans.”
T., 25: “It helped me feel more legitimate back when I was binary identified and I had no community, no role model, no trans friends. I could point to it, and my straight, cis friends and family would take me seriously. Now I think it’s shit. It’s super gender policing in what it says is abnormal behavior for men and women, and it ignores people who prefer not to identify within the binary. Also: it makes transness a disorder. “
Q., 26: I think it’s awful that we have to have someone officially diagnose our genders, but as things are, it is a useful tool for many people to be able to get the treatment they need. I hate that it’s called a disorder.
K., 26: “In addition to the fact that it pathologizes difference, it can force folks, particularly nonbinary persons, to be disingenuous about how they experience their gender just so they can receive the treatment they need. It should be done away with.”
Areas of improvement you’d like to see in the field of therapy / psychology for genderqueer / non-binary individuals?
E., 26: “I haven’t sought therapy for my identity, mostly out of apprehension and even fear. I don’t feel safe trying to do so in my area, for it is a highly conservative one.”
C., 21: “Informed consent for all! Don’t even bring up the “real-life test” since that’s sadly impossible for almost all nonbinary folk.”
J., 19: “Understand that some trans* people don’t want to move strictly from completely male to completely female or vice-versa bodies. Some of us want a mix or to just be neutral. “
L., 15: “For everyone to be treated like how they feel is valid, no matter on their age. I’ve heard many stories of doctors and/or other adults not giving people, specifically minors, things that could help them because “they might change their mind.”
T., 25: “I’d like the focus to shift from treating “disordered people” to helping people who are oppressed by gender/biological essentialism, cissupremacy, and the binary gender system to learning how to live, love, and thrive in this world.”
3) Medicine
Have you seen a doctor or other medical professional for hormones, surgery, or other aspects related to transition?
People could select more than one checkbox, so percentages may add up to more than 100%. The Other field allowed for a write-in response.
Yes, hormones (but not surgery) 14 8%
Yes, surgery (but not hormones) 4 2%
Yes, hormones and surgery 9 5%
No 149 82%
Other 21 12%
Write-in responses under Other included: “I’d like to look more into hormones but I don’t trust most doctors to understand.”
“Saw for hormones initially and backed out.”
“Top surgery only and was previously on hormones but stopped.”
“Am looking into one.”
If you did receive medical treatment, did the treatment require a letter from a psychologist beforehand?
The Other field allowed for a write-in response, which was primarily filled in as “N/A” or “not applicable”.
Yes 15 8%
No 33 17%
Other 148 76%
Briefly describe what medical procedures and/or access to hormones you sought out and if your needs were met:
M., 25: “I had top surgery with an informed consent doctor, where I did not need any sort of documentation about any diagnosis, disorder, or counseling. My needs were completely met. I also go to a transgender youth clinic where I can access hormones and trans-specific counseling, and other health needs, whether related to being transgender or not, but always trans-inclusive.”
R., 29: “I endured a few harrowing years of therapy wherein I was pressured and stonewalled until I gave in and pretended to be someone I was not so I could begin hormone treatment. My needs were only technically met in that I eventually got on HRT.”
O., 23: “I was seeking a hysterectomy which required a minimum of six months counseling and a letter from a psychologist. I didn’t get the procedure.”
J., 25: “I saw an endocrinologist one time to get a prescription for testosterone (didn’t have a pre-T hormone level check or blood pressure check beforehand), then saw his nurse once after that to get my first shot and learn how to administer the shots myself. My dose of testosterone was too high for my first 3 years on until I went to a physician’s assistant at a clinic near where I live, had a hormone level test, and decreased my dose. I’ve mostly just seen physician’s assistants and a couple internists, and I’ve never really found quite the right dose of testosterone to be on. I’m planning on seeing another endocrinologist soon, prior to stopping testosterone.”
T., 25: “Access to hormones and surgery were super easy, super smooth. But I know that I was really privileged to live where I did with the doctors I had access to.”
What were the most beneficial aspects of your experience?
Z., 23: “My current doctor is lovely, listens to my concerns, respects my identity and is available to talk to if I have problems or get sick. She really cares about me and that is absolutely amazing, I haven’t had such lovely care since I was still being read as cis. That’s kind of sad to say, actually.”
S., 29: “I learned who cannot be trusted with sensitive and personal medical decisions I needed for my mental and physical health.”
C., 44: “I feel awesome! I feel alive, I feel calm, I feel relaxed, I feel happy and excited to be alive. “
M., 25: “I have never had a gatekeeper that I had to fight for access to my medical needs. I dealt with people who were knowledgeable or at least respectful of my identity.”
N., 60: “Dealing with a doctor who understood my desire to transition and did not push any preconceptions on me. “
Any negative aspects of your experience? Explain, if so:
C., 22: “I was pretty intimidated. First, there was the doctor who didn’t understand why I would want a lower dose of testosterone (either long-term OR short-term to lower my voice). Then there was the surgeon who in person flat-out refused to do top surgery without grafts, even though he had said he would via email months before and that was why I had chosen him. He asked some invasive questions before realizing he was out of line, but still required more of me.”
A., 29: “I was prescribed HRT after a two year struggle to get it, wherein I was subjected to pressure to conform to an image of hyper-femininity that was constantly policed. My needs were not adequately or sufficiently met due to the insufficient dosage and the initial pressure to conform to a supposed feminine “ideal” that I never wanted or needed in the first place.”
G., 21: “Doctors refusing to using the correct name, pronouns, title (I use Mx). Doctors not seeming to be aware that being genderqueer doesn’t mean I don’t require physical changes.”
A., 20: “Whole process was too stressful between transportation miles away to the office, having to pay 100% out of pocket for ALL care given…and having to once every three months go into therapy where I had to lie blank faced.”
H., 19: “The insurance I’m working with just recently changed their requirements for transgender individuals, and are probably still in the process of changing — additionally, it isn’t as if there are too many people who are going through this process. Therefore, there isn’t a very streamlined process for this. Most of the weight is on me to go around and talk to the right people and collect the right letters. It’s all a little scattered, and a bit of a barrier for somebody who like me who hates phones and dealing with new people.”
Areas of improvement you’d like to see in the field of medical health care for genderqueer / non-binary individuals?
S., 28: “I believe before anything useful can be done regarding surgery and gender NON-BINARY gender reassignment surgery, one has to deal with the medical profession’s ethical stance on such issues. Formulating new concepts and regulations for dealing with gender-variant people in a non-discriminatory, non-reproachful manner is key to this. “
A., 22: “It seems there needs to be greater acceptance and validity placed on GC/nonbinary identities. While I don’t experience regular dysphoria, I know many people that do - and from what I’ve heard, the “gatekeeper” system means that many nonbinary people need to learn and recite the scripts of the normative trans narrative in order to access the medical options. So someone who intensely needs chest surgery might need to “pass” as a transman, even if they don’t ID as such. That erasure is really problematic and harmful; in creating the need for people to be duplicitous to get what they need, the system may be not serving to the best of its ability (eg. not having the whole story on how someone will use the shots they get; if they’re not able to tell their whole story to a therapist, they may not be able to really heal. Of course that’s making the assumption that professional routes are the ONLY path to healing, which is false but for many people may be the case). I guess to clarify - people adapt to a lack of resources by leaning more on community (eg. internet, peer groups), but it would be so helpful if the medical community was actually a core support as well as opposed to a gatekeeper, foe, or even like a semi-awkward relative.”
K., 23: “It should be as easy to have top surgery/bottom surgery/get hormones as it is to get a nose job. “
C., 37: “I thought for years that I could not access hormones because I wasn’t someone who had a classic transsexual narrative—just spreading the word that it is possible (if it is) would really help. Also, I think everyone in the field could use some help/training/supervision in asking about preferred pronouns, and asking before touching, and in general being sensitive around trauma and discomfort with nakedness.”
B., 24: “More acceptance and knowledge. The majority of people I’ve talked to aren’t completely open to their doctors when it comes to any non-binary or androgynous stuff. Even for trans* in general, you’re pretty screwed if you can’t find anyone accepting or knowledgeable. Especially if you find yourself in an emergency room, which is already scary enough.”
4) If you haven’t received health care…
Please explain why you haven’t sought out health care (psychological, medical, or both) related to genderqueer / non-binary identity in the past or present:
(Sean, below, requested to be cited by name rather than an initial)
Sean, 22: At first it was because I didn’t know where to go. Then it was because I was dependent on my parents for funds, and they wanted no part in helping me transition, and I couldn’t afford anything on my own. Eventually I stopped wanting to medically transition.
M., 20: “I have not fully come to terms with my gender identity/I don’t really know what it is yet, so I would prefer to leave more drastic measures until I am more sure of myself.”
R., 20: “I don’t need someone telling me my gender. That is something that I should be able to figure out on my own through experience. “
J., 17: “Fear. I’m pretty young and I want to get a foot in the door of my life, and I’m afraid that seeking out these resources could jeopardise that. I need them desperately but I am not at all comfortable with letting authority figures know that I’m not what they think I am.”
D., 27: “Financial reasons are top of the list, as I have no health insurance. I am also worried about being pathologized, both for my desire to be neither sex (ideally I would want top surgery and a hysterectomy) and my asexuality (and moral judgements about my pansexual relationships are really not something I want to hear, either). I don’t have the money or the patience right now to educate a therapist.”
