Ten powerful points for the health sector: lessons from #LBQWHC17

Melissa Sweet
Friday, July 21, 2017

Croakey longreads, Social determinants of health, Discrimination, Tobacco, Disabilities, LGBTQIA+, Mental health, Women's health, Health reform, Health ethics, Safety and quality of healthcare and aged care, Public health and population health, #LBQWHC17

Presentations and discussions at the recent Lesbian, Bisexual and Queer Women’s Health Conference in Sydney revealed significant gaps in the health sector in policy, research, practice and knowledge.

In the must-read article below, Amy Coopes, reporting for the Croakey Conference News Service, identifies the top ten lessons out of the conference for the health sector and wider community.

1. Smoking is a major problem in the LBQ community

Australia may be a world leader in efforts to curb smoking, but mainstream campaigns are not reaching the lesbian, bisexual and queer community, with tobacco use 2-2.5 times higher than that seen in the broader populace: 30 percent overall and a staggering 42 percent of 16-24 year olds, according to the latest SWASH survey.

This is a major failure in public health terms.

Why do LBQ women smoke?

Internalised homophobia, minority stress, discrimination and bullying, isolation, polydrug use, a community culture of smoking
Additional risk factors: lower levels of education and income, more likely to report regular binge drinking and illicit drug use, more likely to have experienced anti-LGBT harassment and to have received a mental health diagnosis

Why are current campaigns failing?

There is no mention of LBQ women at the national policy level, despite data showing 74 percent of LBQ smokers want to quit, 73 percent had tried in the past year, and only 16 percent had never tried to kick the habit
Mainstream quit models like Narcotics Anonymous do not resonate with LBQ women due to theist overtones, are not safe or relevant spaces
Within the LBQ community smoking is seen as a cultural norm; outside the community there are implicit biases about smoking as a crutch for trauma
With the exception of ACON’s Smoke Free Still Fierce initiative, there are no campaigns targeting and featuring LBQ women, and no funding for this work
Most GPs and those working in public health and policy simply don’t understand that this is a significant issue for the LBQ community

What might work better in this space?

Peer support programs linking LBQ smokers to LBQ ex-smokers – a role model who can answer questions, provide accountability and guidance
Community-conceived, driven and led campaigns with positive messaging, elevating LBQ voices and faces
Targeted approaches appreciating the diversity within the LBQ community and engaging partners such as LGBTQI sporting clubs
FUNDING

Check out ACON’s Smoke Free Still Fierce resource hub here.

2. Everyone with a cervix needs a Pap test

Despite years of concerted education and campaigning, one in five LBQ women have never had a Pap test, and women who had never had sex with a man remain 2.5 times more likely to have never been screened, according to SWASH.

Myths persist among health care workers about lesbians not needing cervical screening, and there are significant barriers for trans and gender diverse people including dysphoria around those parts of the body, the fact that the test is designated as being ‘for women’, and previous traumatic experiences with the health system.

In response to this, ACON will be rolling out a new awareness campaign ‘At Your Cervix’ to increase screening rates among the LBQ & TGD communities, including sensitivity and awareness training for health workers and a community-run STI screening clinic in Sydney. At Your Cervix will launch in December, to coincide with nationwide changes to the cervical screening program.

Its central message? Everyone with a cervix needs screening.

Watch our interview with At Your Cervix project lead Amie Wee, and check out her conference presentation At Your Cervix.

3. Beyond the binary: boxes don’t capture bodies don’t capture beings

Asking someone to check a box on some of the most fundamental aspects of their being is worse than reductive — it can be oppressive, offensive, even obliterative. Categorisation of gender (binary or otherwise) cannot capture the spectrum of human diversity, in body, desire, relationship or sexual practice. Each is distinct, diverse, and differ from person to person, reflecting a spectra of possibilities.

In simple terms:

Gender is part of how we make sense of ourselves and is situated across spaces of femininity and masculinity. Gender identities are typically female, male, neither or a combination of the two, and identity isn’t contingent on any medical or legal transition. Gender experiences might be cisgender (identifying with the gender we were assigned at birth) or transgender (identifying to a different gender then what we were assigned at birth).
Though commonly conflated, bodies are not synonymous with or prescriptive of gender (or vice versa); any and all genders can have any and all physiologies
Concepts of self as a sexual being and identification with a social/cultural group (e.g. straight, gay, lesbian, dyke, bisexual, queer, pansexual, asexual and many others) may not capture all the desires, relationships and sexual practices people experience and prefer.
This is critical in sexual history-taking, public health campaigns, policy development and respectful, safe, appropriate research.

According to SWASH, identities within the LBQ community have shifted over time, with more and more women identifying themselves as queer rather than lesbian, particularly in younger age groups, and exclusive attraction to women the experience of just one in three.

Of note, two thirds of LBQ women surveyed by SWASH said they had ever had sex with a man – 1 in 5 reported doing so in the previous 6 months (and 38 percent often did not use protection). This underscores the importance of not making assumptions about sexual behaviours based on identity.

Attitudes and language translate into very real health outcomes, determining whether LBQ and trans and gender diverse (TGD) individuals access care, their experiences within the system and their overall wellbeing.

One study cited showed 28 percent of TGD people had experienced harassment in a medical setting, 19 percent had been refused care and two percent were victims of violence in a doctor’s office. Another study showed that 24 percent of TGD disagreed or strongly disagreed that they were treated with respect and sensitivity by service providers, and 53 percent strongly agreed or agreed that services did not understand transgender issues.

The overarching message – I’m great, but assuming makes you a bit of a donkey.

DO ask about sexual partners and practices using open and non-judgmental language, inquire about preferred pronouns and be guided by the person in front of you. DON’T jump to conclusions about bodies, gender, desires, relationships or sexual practices. NEVER intentionally misgender, use incorrect pronouns or refer to a TGD person by an old name or identity.

There are some great factsheets from the LGBTI Health Alliance, the Victorian Equal Opportunity and Human Rights Commission and resources on building inclusive health services from GLHV.

Researchers from the University of Melbourne have also developed this fantastic guide and checklist for GPs & nurses on creating LBQ-friendly practices.

4. The medical community is failing intersex people

The term intersex encompasses a diverse spectrum of variations, mostly genetic, on the medically dichotomised definition of sexual and reproductive anatomy as male/female. Despite being a part of normal human variation since, well, forever, Western social and cultural narratives and language around intersex continue to medicalise and pathologise.

Surgeries to ‘correct’ or ‘assign’ gender to intersex infants continue to be legal in Australia, despite the fact there is no evidence base or medical consensus for these procedures, rendering them little more than genital mutilation.

In March this year, a delegation of intersex people from Australia and New Zealand came together to discuss community concerns and priorities going forward, and issued the landmark Darlington Statement. As its first order of business, Darlington calls for the ‘immediate prohibition as a criminal act all deferrable medical interventions that alter the sex characteristics of infants and children without personal consent’.

Research presented at #LBQWHC17 showed that 95.5 percent of intersex people surveyed felt the surgery performed on them as children was inappropriate, reporting it had been ‘completely disempowering’ to not have been able to consent. In adulthood, 16.7 percent found sex dissatisfying as a result, with six percent reporting little to no sensation and 13.7 percent experiencing a mental barrier to sex.

Incorrect assignment requiring later correction occurred in 25 percent of all cases, and scarring left people without sensation, or infertile. Some 40 percent of intersex people who underwent such surgeries were estimated to develop severe psychological issues. Poor education among healthcare professionals, conflation with transgender and lack of intersex-specific services were also identified as issues.

Organisation Intersex International (OII) Australia’s Bonnie Hart said intersex people had huge trust issues with the health system, and questioned how, when most assignment surgeries were inherently experimental without an evidence base or long-term follow up, they could meet the maxim primum non nocere. Hart said intersex people encountered a raft of other barriers in accessing health:

Lifetime of isolation from being told they are ‘rare’
Conflict between raised/lived gender identity and identifying as intersex; inherent political connotations of this act
Lack of an empowered language to demand affirmative health care, spectrum of identities and bodies beneath the umbrella of intersex making a unified voice and agenda challenging
Inherent heteronormativity of treatment paradigms – some intersex women need mammograms and Pap tests, others require prostate care
Poorly managed transition between paediatric and adult care
Lack of clinical consensus on intersex variations and treatments
Inherent pathologisation and othering of intersex by the medical system

Hart said greater education was needed for midwives, GPs and other medical professionals on understanding that intersex was not a pathology and that such messages needed incorporation into the school sex education syllabus.

You can access the LGBTI Health Alliance resources on intersex here and OII Australia has a guide to including intersex in research studies and surveys here, along with a heap of other excellent resources. You can also catch our interview with Bonnie Hart here.

5. Eugenics and ethical dimensions of the IVF industry are not being addressed

There has been a pink dollar boom in the IVF industry as more and more LGBTQI+ people seek to have children, but the ethical implications of fertility clinic screening have been little scrutinised.

Through sperm testing or use of pre-implantation genetic diagnosis (PGD), where a cell is removed from the developing conceptus for analysis, couples are offered the opportunity to screen out a host of ‘disorders’ including trisomy 21, cystic fibrosis, haemophilia A, Tay-Sachs and Turner syndrome, along with a number of other intersex variations. Unlike sex selection of embryos, which is illegal in Australia, these screening practices are not only permitted but encouraged by clinics.

Disability rights advocate Jax Jacki Brown told the forum 92 percent of all trisomy 21 cases detected in the United Kingdom are now aborted due to stigma and assumptions around living with a disability or the supports available. She said screening out difference was grounded in the medical model of disability rather than the social model, which views disability as a construct of society and is now the globally accepted way of understanding disability.

Organisation Intersex International (OII) Australia prepared a comprehensive submission to the NHMRC on ethical issues around PGD and we’d encourage you to have a read here.

Other ethical issues discussed at the conference included:

Declaration of same-sex couples as ‘socially infertile’ for assisted reproductive technology purposes, meaning they do not get access to Medicare rebates for the first cycle of treatment and have to pay the full cost (~$15,000) up front
Race and donor conception, with delegates told some clinics offer couples a fast-track to the top of waiting lists if prepared to use an Asian or African-American sperm donor

6. Discriminatory public discourse affects health

Harassment and abuse of LBQ women in Sydney has hit a 10-year high, rocketing 10 percentage points in the most recent SWASH survey period – two years dominated by vitriolic political and media debates about the same sex marriage plebiscite and Safe Schools program.

Unsurprisingly, this has been matched by an increase in the proportion of women reporting moderate to high levels of psychological distress (continuing a trend seen across the survey’s 20-year history) and receiving a mental health diagnosis.

The bottom line? Brinksmanship over whether the general public should be allowed to discuss (at length and in technicolour) and then vote on the civil rights of a historically oppressed minority is a. permissive of abuse, discrimination and vilification and therefore b. traumatic, damaging, and unnecessary.

Marriage was circumscribed as between a man and woman by parliament, without a public vote, in 2004. To pretend anything greater than this is required to reverse it is dog whistle politics with the very real potential to harm. See SWASH lead investigator Julie Mooney-Somers on this issue here.

7. Be an ally, not a saviour

This was a recurring theme across the spectrum of groups who presented at the conference, whether it be Indigenous LBQ women or trans and gender diverse people – we don’t need saving, we need support.

Too often, delegates heard, service providers would come galloping in on their white horse, martyr complexes aloft, seeking plaudits for top-down solutions. What was actually required was support for community-driven ideas and initiatives.

Presenting Indigenous perspectives, Kirstie Parker called for “good hearts who will stand beside us”, sharing her 10 tips for showing up in solidarity (below), while Dr Vanessa Lee stressed that Indigenous women did not need saving. You can catch our interview with them here.

Rei Alphonso, from the Victorian AIDS Council, urged delegates to free themselves from the tyranny of perfection when it came to seeking allies. Perfect allies, the conference heard, simply don’t exist.

8. Services not known to be accessible are assumed to be inaccessible

All the diversity and inclusion training in the world won’t make a difference if you don’t advertise – proudly – that your service is LBQ and TGD friendly, accessible and safe.

It’s not enough to have an open door, you have to go through it, out into the community, and bring people inside. There are huge barriers to overcome for many people in these groups in accessing health including previous poor experiences. Offering a safe, non-judgmental space of respect, where LBQ and TGD individuals are seen for who they are, goes a long way.

9. Acknowledge your implicit bias

No one is free from bias, whether it be about sex, gender, race, sexuality, class, political worldview, taste in music or men. There was much discussion about the overrepresentation of white, middle class women within LBQ community organising; erasure of and discrimination against bisexual women by lesbians and queers and the invisibility of trans and intersex narratives.

When held by those outside the community, particularly health providers, biases (lesbians don’t sleep with men/need Pap smears), can do actual harm.

Microaggressions can take many forms, from the binary boxes for sex and marital status on health documents to the way questions are asked in clinical settings (assuming the gender of a partner) the facilities provided (male and female toilets) and the diversity of staff. There are neutral ways to inquire about everything, and there is no excuse for refusing to do so except implicit bias.

10. Positive messaging has power

The greatest moments at #LBQWHC17 were those that captured a community in full flight, whether it was Kirstie Parker’s soaring keynote, Indigenous delegates leading the auditorium in traditional song or the irreverent bass of Smoke Free Still Fierce.

Rather than dwelling on the downsides, delegates revelled in celebrating difference. Any engagement with LBQ women must have this as its starting point.