The w o b n i Ra l a t n e M Health t r o p p Su s e c n e Experi Study gs indin F f o y r ma Sum Victoria raser Gloria F ton elling W f o y it Univers Background Project Overview and Methods Participant Demographics Gender and Sexual Orientation Hauora/Wellbeing Access to Mental Health Support Helpfulness of Mental Health Professionals Experiences of Discrimination Experiences in Therapy Creating Rainbow-Friendly Spaces Gender-Affirming Healthcare Strengths Ngā Mihi In this report we use a few different umbrella terms to describe the people who’ve taken part in our research, including “rainbow community members,” “sex, sexuality, and gender diverse people,” and “queer, trans, and intersex people.” We aim to be as inclusive as possible with our use of language, but acknowledge that not all of these terms work for everyone. 2 International research shows that sex, sexuality, and gender diverse people around the world experience high rates of adverse mental health outcomes as a result of stress caused by stigma, violence, and discrimination. Research from Aotearoa – a country well-known for being at the forefront of social change – suggests that mental health disparities within rainbow communities reflect those seen overseas, but there is a current lack of research examining whether rainbow community members are receiving the support they need from Aotearoa’s mental health system. The aim of this study is to gain an in-depth understanding of the experiences and needs of queer, trans, and intersex people who access mental health support in New Zealand. Our hope is that this will highlight potential areas of improvement in New Zealand’s mental health service provision for queer, trans, and intersex clients. A second aim of the study is to consider ways in which these findings can inform the development of a resource to guide mental health professionals in their work with rainbow clients. The research questions for this study are as follows: What are the experiences of rainbow community members who access mental health support in New Zealand? What are the experiences of gender diverse people who undergo mental health assessments for gender-affirming healthcare in New Zealand? How can these findings inform the provision of high quality and responsive mental health care for queer and trans people in New Zealand? 3 The Rainbow Mental Health Support Experiences Study is a community-based research project led by Gloria Fraser from Victoria University of Wellington’s Youth Wellbeing Study, in partnership with Gender Minorities Aotearoa, InsideOUT, and Rainbow Youth. We also seek guidance and advice from other rainbow community organisations and leaders. Gloria is supervised by Professor Marc Wilson and Dr Anita Brady. As a research rōpu, we make decisions around research design, interview and survey questions, research recruitment, and analysis of findings. The project is made up of three parts: interviews with rainbow community members, an online survey with rainbow community members, and the development of a resource for mental health professionals, to guide their work with rainbow clients. This report summarises findings from Study 2, the online survey. Due to space constraints we have not been able to report on all of our findings. If you’re interested in more detailed results, or have a question that is not answered here, you can contact us for more information (see the final page of this report for contact information). To see a summary of results for Study 1 (the set of interviews with 34 queer, trans, and intersex community members) visit http://tinyurl.com/ study-1-summary. The resource based on Study 1 and 2 findings will be developed in early 2019, with a tentative launch data of July 2019. The online survey was developed based on analysis of 34 interviews with queer, trans, and intersex community members about their experiences of accessing mental health support, past literature on rainbow mental health support experiences, and the advice of community leaders and organisations. After the survey was drafted we held a series of hui for feedback on the proposed survey, and made changes to the survey questions and design where needed. We also invited those we had previously interviewed to pilot the survey and provide final feedback on the design and questions. The survey was advertised through social media, asking community organisations to distribute our flyer through their networks, and posters in universities, cafes, and on community noticeboards. 4 there were responses to the survey that we could use 1.4% Northland Auckland 29.4% 2.5% Bay of Plenty Waikato 6% 0.5% Taranaki 1.5% Gisbourne 2.3% 3.9% Whanganui & Manuwatu 1.8% Nelson & Tasman 0.7% 28.9% Wellington different ethnic affiliations 0.9% 11.1% Canterbury 1% outside Aotearoa 6.4% Otago 1.7% Southland average age Hawke’s Bay Malborough West Coast respondents were aged between were intersex or had a variation of sex characteristics were unsure and gender- affirming healthcare iwi around Aotearoa were trans or nonbinary were unsure and had accessed are in the process of accessing have not accessed but wish to access 5 whakapapa connections to Unlike most surveys, which ask about gender and sexual orientation using tick boxes, we asked our participants to describe their gender and sexual orientation using open boxes, meaning they could use as many terms as they liked. Survey respondents used a wide range of terms to describe their gender and sexual orientation. The word clouds on pages 7 and 8 visually represent responses to the gender and sexual orientation questions; the bigger the word, the more participants wrote it into the open boxes. These responses highlighted how complex and multifaceted gender and sexual orientation can be. Many participants told us how difficult it was to provide short responses to these questions, with some sharing that they may describe themselves in different ways depending on the context, or might simplify the words they use to help other people understand them. Survey respondents often noted that their gender and sexual orientation shifted over time, and others shared that they were unsure about their gender or sexual orientation, with some saying they didn’t think they were going to find out any time soon – and that this was fine with them! 6 Woman-(cis mostly-male Demigirl/Agender Transgender-FTM Transgender-Woman Male/Questioning incoherent-screaming Non-binary/gender-queer Non-binary/-gender-queer Non-binary-trans-masc/male e CIS -w om an -bin g ue st io nin ar yq in Male-(AFAB Demigirl Demiboy Gender-Fluid ur e Whatever-i-feel-on-the-day male rfluid- Gende Trans-Female Masculine/questioning Gender-is-confusing not-sure Transgender-demiboy Nonbinary-trans Female-binary er qu Trans-masc/guy ee n r oma cis-w pui,- tā Taka er Neutrois Trans-masculine-non-binary GenderQueer Cis-woman Cisgender-female Trans-femme Girl I-am-a-woman.-Female non-binary-transman Femaile bigender Non-binary-/queer transgender-man feminine gender Male-CIS 7 Queer-ftm Non-binary-/-trans-woman Male/Man Nonbinary-transmasculine Transman Not-applicable Non-binary/Female-leaning Female(I-guess Male-(Ftm Gender-non-conforming Non-Binary/Gender-Queer Transgender-man Nonbinary-(AFAB Zigzag I-am-not-sure,-I-am-somewhere-in-the-non-binary-area-tho Non-binary/-trans-guy/-genderqueer Non-binary-skewing-feminine Nonconforming Female-/-nonbinary GenderQueer-Non-Binary Gender-Non-Confirming Gender-nonconforming/-Nonbinary-(I'm-not-sure-which-word-is-best-yet -binary female/non Technically,-MTF-transsexual-woman,-although-socially,-more-like,-woman-whose-medical-history-is-kept-private I-don't-know Cis-guy nd Possibly-FTM-transgender-or-nonbinary,-although-I-am-AFAB-(assigned-female-at-birth Nonbinary Femaleish Trans-Non-binary ge woman Trans-masculine an intersex-(i-consider-this-my-gender Genderqueer-/-non-binary e- Mtf-transgender Genderfluid y-trans-m FTM-guy m y Transmasculine Nonbinar genderqueer-and-nonbinary y,fe m Male,-sometimes-genderflux ar er Cis-Female bin Non-Binary a le nonbinary Questioning nd ge on Genderqueer Man Cis N trans-fem-/-genderqueer B Trans-masc Genderfluid--Female-leaning ar m Non-binary-AFA Make nd Male-(ftm Male-expressing Nonbinary/transmasc/genderqueer Bin Tra Trans -ft ns Queer Gender-fluid Dont-have-one female-cis Questioning-but-not-female Non-Binary-Transgender---maybe-Trans-Masc n- fem ale r-M de n ge Cisgender-female-(but-potentially-questioning sorta-a-girl,-sorta-not Gurl Cisfemale No ale Ftm-m trans-male Trans-male Agender/non-binary ge Bigender-(female-+-androgyne-are-the-2-genders-I-identify-with r/ ary -wom en on queer trans on't- Ze/it I-dont-think-im-going-to-find-out-anytime-soon,-and-im-okay-with-that No t-s an nde r -ge hav e-a -w om none Genderqueer-cis-woman Male-or-Neutrois Unsure ee -(I-d genderfluid u rq N/A i de Demigirl/nonbinary s-n lesbian Cis-male Fluid Blended pu en Tra n Female-ish G Male Dyke Tak ata Female male so girl Cis-Woman agender y ibo dem ing l-th -gir eird f-w rt-o o -s gender-queer me cis no nb bfe m ale -fo r-e as ay -n st -s -t oju te nd er -b ut -ien d ag ne dlig Ge nd er -fe flu m id /flu ale x .-m ay be -li ke -fe m ale -a ith -w alo ng goin -g ith -o kw bu t-im now kn un ing n stio ue tāhine Transgender-male Trans-female Neutral /q le Ma Transmasculine-(male-adjacent-non-binary Involuntary-celibate i r-fluid gender-fluid Demi-Girl Femail Cisgender-Female Man,-transman takatāpui Trans-woman ftm-/-nb Female-/-Genderqueer Cisgender-woman ende trans-masculine Null N Cis m-g or-if-I' Male/Non-binary cis-femme-fluid Non-binary-/-Woman-/-Takatāpui.-I-am-AFAB-and-drift-in-and-out-of-womanhood unsure Fluid,-nonbinary Cis-female,-questioning-genderfluid male- Cisgender-Man Cisgender-femle Male-(ftm-but-don't-like-to-use-it ibo be Trans-Masculine le ema atal-f Gender-queer I-don't-have-a-gender-and-am-not-trans fe etely- ay Questioning,-probably-agender trans-female d n o y Intersex-Female d -in er nd Male-(with-trans-experience m de oridflu ar ale ,-m / er cu as ,-m an M cisgender-woman Non-binary-transgender-male n bin luid no Trans-FTM Genderqueer-Woma on erf ale m e t-f en er iff -id e lin Transgender-mtf Female-aligned-non-binary e Fe m /n nd Nonbinary/queer Gender-fluid/non-binary genderfluid---third-gender-to-demiwoman Divers Gender- an trans-genderqueer Genderqueer-/-genderfluid-/-nonbinary pl -com er-I'm th s-whe W om ge Femle sure-a Not-defined Transmasculine-non-binary g in y tif en femail e---un femal Femal genderqueer ry/ Female,-possibly-agender fluid Female,-Cisgender ina Female/NB Male-(FTM Non-binary-trans-femme N Transwoman Transgender--female-to-male Agender-female--(pronoun-ambivalent Queer-(cis-female-on-paper Cis-Gendered-Female Boy non-binary,-afab nb Ira-tāngata-kōwhiri-kore en Male-identifying Wahine Female-/-questioning ag gender-neutral;-male-presenting no I-am-female.-I-am-a-woman ge an Mascfluid agender/demigirl Non-binary/transmasculine er nd Transgender-Male om w Cis Transfeminine Ge Non-binary/agender Nonbinary?-Maybe y r a Cis-women Gender-fluid/Non-binary -man Trans transwoman-female femme-/-agender b n Male-and-female Trans-masc-Nonbinary m y r o inacis-female W -b Cis-female A Non-binary-femme Non-binary/female cisgender-female in gender-non-confirming-woman Cisgender-Woman Transfemme ale m -fe er er /h nd he ge /s ns an tra om /w ale m Fe n a Non-conforming GenderFluid Bigender Heterosexu al Homosexual al al u ex es n Gy Ho Greyromantic Oriented ur io us at-the-moment Mostly-straight Visual exuality Flexible Demiromantic Undefined Prefer Grey-ace Transmascbian ic Maybe Polyamorous Unsure-how-to-describe anroman tic Male Hard-to-define Rainbow al-C hara IDK Curious cte r no t-c om Interested Same-sex pl et el ys ur e straight Cis Fluid Non-specific sorta nd e I-like-guys -ge Heteroflexible Fic tion Slightly Aro Possibly r W om an Lesbianism Poly Homos Biromantic P Grey-Asexual Lesbian Prefer-to-use-the-label As Relationship-with-a-woman not-100%-straight ted lica mp Co t an om or m Bic Asexual-spectrum ex u Questioning Homoflexible ple Sa I-like-girls ds ar w to g- in Ace Define-my-orientation Bisexual-past In-love Bisexuality mi Male-attracted I-think Identify Mostly De Gay-leaning Attached not-sure an le Pan ia r Va Pe o me QueBisexual T a katāp e ui Unsure r Gay Transexual ble all-genders not-c omfo rtable -with -labe Long-term ls I-like-people Females Don't-use-a-label Dyke Preference At tra Androsexual ct ed Fo Evolving rm erly to-c e -id en rtain tifie d peo ple lithromantic kinsey-scale Often-non Attracted-to-women-more-than-men Aromantic lain Exp I-don't-know Pansexual ing -tir -is ing Polysexual Gay-ish Still-trying-to-figure-it-out Omnisexual Non-Binary Greysexual Easier-to-tell-people erm d-a-t un n't-fo e hav unknown Fe m al e Demisexual sexual orientation Heteroromantic 8 / 1 2 3 4 5 Spiritual wellbeing – taha wairua Mental health - taha hinengaro Social wellbeing – taha whānau Social wellbeing – taha whānau very poor poor average 1 Mental health 1 2 3 4 5 taha hinengaro 1 2 3 4 4 5 good 2 3 Social wellbeing 1 2 3 4 5 Physical health –very taha tinana good taha whānau 5 Spiritual wellbeing – taha wairua Spiritual wellbeing – taha wairua - taha hinengaro Social wellbeing – taha whānau 1 1 1 3 4 2 3 4 2 3 4 2 3 4 5 5 5 1 2 3 4 5 Physical health – taha tinana 5 Spiritual wellbeing – taha wairua Physical health – taha tinana Mental health - taha hinengaro Physical health 1 2 3 4 5 taha tinana 1 2 We based our questions about wellbeing on the Te Whare Tapa Wha framework, a Māori model for understanding holistic health. Results showed that, overall, 1 2strongest 3 4 5 participants’ domains wellbeing 1 2 3 4 5 of wellbeing was taha whānau, Spiritual taha wairua or social wellbeing, and taha or physical health, Physical health – taha tinana 3tinana, 4 5 while the weakest was taha hinengaro, or mental health. 9 2 1 35% 55.2% 9.8% were seeing a mental health professional were not seeing were waiting 1 How long did you wait to see a mental health professional? 20.3% one week or less 0% 0% 39.5% between 2-5 weeks 13.8% 15% 6-8 weeks three months or more 20% 40% 60% 80% 10 % 20% 40% 60% 80% 10 % Series1 Series2 Series3 Series1 Series2 Series3 Series4 Lengthy waiting times made existing mental health difficulties a lot worse. Some participants had been told by their GP that they were unlikely to receive publicly funded mental health support, due to high demand and lack of availability. Some reported that they were only able to access help following a suicide attempt, or if they were considered to be high risk, while others noted that once they had told services they had no suicidal intent, they did not receive any follow up referral. Several particiapnts had accessed care privately and noted that this was a privileged position – that to others having to pay for private care would be a significant barrier. Although most feedback about waiting times was negative, some participants shared that they were seen very quickly by their mental health service. 10 Thinking about all the mental health professionals you have seen - overall, how helpful have they been in supporting your mental health? extremely helpful mostly helpful neither helpful nor unhelpful mostly unhelpful extremely unhelpful We also asked participants to rate the helpfulness of different types of mental health professionals. Psychologists and therapists were, on average, rated as most helpful. Participants also got support from those around them, like whānau, friends, partners, and rainbow organisations. On average, these sources of support were rated as mostly or extremely helpful. 11 A third of participants had heard stories of other queer, trans, and intersex folks having negative experiences with mental health professionals. Almost half had experienced discrimination outside of mental health settings. Over 20% had had negative experiences with other health professionals in the past. Participants who had experienced discrimination outside of mental health settings, or had heard of others having negative experiences with mental health professionals: felt less comfortable discussing their sex, sexual orientation, or gender with a new mental health professional, and were more likely to worry that a new mental health professional would respond awkwardly or with discomfort when they came out. Survey results showed that participants’ average number of positive experiences has increased over time. The average number of negative experiences has stayed relatively stable over time, but there is some evidence to suggest that the kinds of negative experiences people have has changed over time: far fewer participants reported that their mental health professional had tried to change their identity in the last five years than those who saw a mental health professional more than five years ago, but the number of people who said their mental health professional required education about sex, sexuality, and gender diversity has increased. The figure on the next page shows the proportion of people who had each experience, positive and negative, within the last five years. 12 0% 20% 40% 60% Focussed on topics you’d come to discuss Was knowledgeable about sex, sexuality, and gender diversity Affirmed and validated your identity Asked about the relationship between your identity and mental health Used inclusive language Asked about your own understanding of your identity Asked about your coming out experiences Asked about your experiences of stigma and discrimination Displayed visual signs of support, like rainbow flags and posters Asked how you identify your sexuality and/or gender Checked what pronouns you use Shared what pronouns they use Refused to see you after you came out Tried to change your identity Refused to talk about your identity when you wanted to discuss it Used your deadname Implied your identity was a phase or not real Made insensitive or hurtful comments about your identity Implied your identity was caused by past trauma Misgendered you Blamed your difficulties on your identity Focussed on your identity when it was not the issue Seemed surprised or uncomfortable when you came out Required education about sex, sexuality, and gender diversity Assumed you were straight or cis 60% 40% 20% 0% 13 To explore how mental health services could be more rainbow-friendly, we provided participants with a list of different things mental health professionals could do, and asked them to rate how helpful each would be. All of our suggestions were, on average, rated as helpful by participants – though some more than others. In order of most to less helpful, they were: most helpful Using inclusive language that doesn’t assume identity, e.g. “do you have a partner, or partners?” instead of “do you have a boyfriend/girlfriend?” Displaying rainbow posters, flags, or other visual signs of support Checking what pronouns clients use Asking how clients identify their gender/sexuality as part of the initial assessment Sharing what pronouns they (the mental health professional) use when introducing themselves less helpful Asking how clients identify their gender/sexuality on a form Overall, results from the mental health services section of the survey highlighted the need for: Training for mental health professionals about gender, sex, and sexuality The importance of following the client’s lead when it comes to discussing identity The need for an affirmative approach, where all identities are seen as valid and potentially fluid Consideration of the impact of structural factors (like homophobia, transphobia, and intersex discrimination) on mental health and wellbeing 14 In this study, we defined gender-affirming healthcare services as any services that affirms and validates a person’s gender, including support to talk about life stuff, and transition-related services like hormones or surgery. We focussed most of our questions on medical transition services, as there’s very little research on access to these services in Aotearoa, and an urgent need to improve public health provision of these services. The most common gender-affirming healthcare service participants had accessed was hormone therapy, with 90% those who’d accessing gender-affirming healthcare accessing hormone therapy. The average waiting time between participants first requesting hormone therapy and getting their first injection was 47 weeks – far too long when considering that long waiting times increase distress and exacerbate mental health difficulties. of participants had accessed care through the public system through the private system through a mix of the public and private system The most common reason for accessing care privately was because the waiting time was too long in the public system – over half of those that had gone private reported this as a reason for doing so. Of those participants who’d accessed gender-affirming healthcare or were in the process of doing so, three quarters had seen a mental health professional for an assessment in order to access that care. 15 reported that the person doing the assessment had respected and validated their gender, but 62% said they felt pressure to conform to a dominant narrative during their assessment, e.g. having a binary identity, knowing they were trans from an early age, or feeling “trapped in the wrong body”. This suggests that though many individual professionals providing good support to their clients, professionals must still ask outdated questions because of systemic demands. Over a quarter of participants who tried to access gender-affirming healthcare had been denied it. The most common reason they were given for this was that they needed to be more mentally well to access care. This was followed by being told they needed to think about it for longer, and needed to lower their BMI or lose weight. Overall, results from the gender-affirming healthcare section of the survey highlighted the need for: An increase in availability for gender-affirming services Shorter waiting times for gender-affirming services Clear pathways and information about accessing gender-affirming services Implementing an informed consent model, rather than a gatekeeping model, for gender-affirming service provision 16 Because research often focusses on the negative experiences of sex, sexuality, and gender diverse people, we asked participants at the end of the survey what they thought is amazing about being queer, trans, and intersex. For the most part, responses emphasised the opportunities to find community, see the world from different perspectives, and love freely: “ The ability to fall in love with the best parts in anyone. ” It opens your eyes to not accepting a lot of other bullshit we're taught “about relationships, sexuality, gender, and gender roles. There's a lot of cool community stuff to be part of. You get to help other people. Being queer can prompt you to get a better understanding of politics, society, and the world we live in and why we need to change it. ” freedom, creativity, not having to conform, being able to integrate “Love, all of yourself together, compassion for others who are stigmatised, realising everyone has something painful about themselves and feeling connected, healing shame by learning to trust and connect, having a amazing broad family, being able to create your own family. ” strength, resilience and perseverance more so “My identity taughtthanmeany other experience in my life. ” “You meet so many lovely understanding and open people.” liberating resisting toxic gender stereotypes, and I have met the most “It'samazing non-judgmental people along my journey. I feel my transness is something to be celebrated, and love wearing T-shirts which make my gender diversity known to the world. I have an appreciation for how people of all genders experience the world because of the bodies they inhabit. I just wish everyone else felt the same about how cool being trans is! ” me te manaakitanga o mātou ki a mātou “Teanō.whakawhanaungatanga Ka tū māia mātou i ētahi wā i te mea kei te mōhio mātou ko wai mātou. ” 17 This study wouldn’t have been possible without the help and support of hundreds of people who gave feedback on our study design, helped to spread the word about the study, and filled out the online survey. From the bottom of our hearts, ngā mihi nui ki a koutou. We would like to give special thanks to Toni Duder, Aych McArdle, Joey Macdonald, Jelly O’Shea, Ahi Wi-Hongi, Tabby Besley, Lucy Cowie, Dasha Fedchuk, and Jaimie Veale for looking over our survey questions, and Maggie Shippam for help with data coding. Thanks to Kealagh Robinson, Kate McLeod, Kylie Sutcliffe, and the other Youth Wellbeing Study team members for your aroha and support. A big thank you to Jordan Curtis for your beautiful design work on our research flyer, and on this resource. Last, but certainly not least, we would like to thank all our furry (and not so furry) friends who helped us advertise for our study. Thank you Poppy, Artemis, Percy, Ghost, Ziggy, Ollie, Nala, Merlin, Ariel, Banjo, and an unidentified, yet curious, Wellington-based kereru. 18 For any questions, whakaaro, or feedback of any kind on this report or our wider project, please email Gloria.Fraser@vuw.ac.nz Watch out for the last part of our project our resource for mental health professionals launching mid ! 19 The Rainbow Mental Health Support Experiences Study is presented by: Thank you to the Rule Foundation, the Oakley Mental Health Foundation, and Graduate Women New Zealand for providing funding to support this project. This work uses the Gilbert font family which was designed for striking headlines and statements on banners for rallies and protests. A preview version of Gilbert is available on http://www.typewithpride. com. This use of the Gilbert font family is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License https://creativecommons.org/licenses/by-sa/4.0/deed.en. Some minor modifications have been made to this font. This design and its elements are otherwise the exclusive intellectual property of Jordan Curtis. For more information please contact jordancur@gmail.com. 20