“When sex gets hard’ – Sex & disability forum

Content warning for explicit but not gratuitous discussion about sex.

I was lucky to attend this forum recently, and promised to blog my notes for all those interested parties who couldn’t attend. This is not an exact record of the event, I scribbled notes as quickly as I could but none can be considered true quotes. I have paraphrased and may have misunderstood or mis-attributed in places. This was a forum arranged by the Society of Australian Sexologists. It’s a topic close to my heart but difficult to find training in, so I was really pleased to hear about it at the last minute and be able to squeeze in. It was an excellent, wide ranging conversation and I came home even more enthused about being part of cultural changes and a movement towards more freedom and joy in sex for people who have traditionally been marginalised. The panel was made up of:

  • Assoc Prof Greg Crawford, a Palliative Care Physician who works with people and sexuality in the context of end of life care
  • Dr Tabitha Healy, a Medical Oncologist who works with sex in the context of cancer and cancer treatments – she’s become known as the ‘dry vagina doctor’
  • Assoc Prof Sharon Lawn, a Mental Health Academic who described herself as being married to a lovely man with paranoid schizophrenia
  • Dr Jane Elliott, a GP who specialises in treating women who are struggling with menopause
  • Sonia Scharfbillig, a Pelvic Floor Physiotherapist – this is working with the muscles of and around the pelvis to help restore function, elasticity, sensitivity, or ease problems such as chronic pain
  • Naomi Hutchings, a Sexologist who has worked with SHineSA, and in youth work
  • Nick Schumi, also a youth worker, and representing the views of those with a lived experience of disability
  • Kelly Vincent, member for Dignity for Disability, partnered with Nick, and likewise representing lived experience, with additional interests in sex abuse, and sex work

Q: Why don’t doctors talk about sex more?
Greg: Doctors often don’t like to talk about sex. There are cultural issues with many doctors and nurses coming from Asian backgrounds who are very uncomfortable with the topic. There’s a lack of training provided.

Tabitha: Oncologists don’t talk to patients about sex for three main reasons:

  1. I don’t know enough about sex to feel comfortable discussing it
  2. There’s not enough time to bring it up
  3. Isn’t that topic someone else’s problem?

Meetings like this tend to preach to the converted. Training must be compulsory or those who are most vulnerable or anxious will never learn the skills.

Sharon: Mental health clinicians don’t discuss it because they don’t want to open the ‘child sex abuse’ box, because they don’t know what to do once it’s open. Sexuality itself is often pathologised in mental health, especially for young men with psychosis. All their sexual behaviour is interpreted as part of their disorder, and possibly dangerous. Delusions about being pedophiles or rapists are common with such young men, and it’s not hard to trace where the ideas have come from. There are also issues with overmedication when people only have support from mental health teams. Because this often causes sexual dysfunction, then we see non-compliance and often then treatment orders. It’s a big problem.

Kelly: There’s a lot of issues in the disability sector too with people being unwilling to acknowledge that a person with a disability can be sexual or want to have sex… It also helps to ignore cultural ideas about what ‘real sex’ is (ie penetrative sex) to be able to relax and enjoy whatever sexual activities people really want and feel ready for. There are a lot of unhelpful myths about what sex is.

Naomi: There are a lot of issues with doctors not disclosing that mental health medications can kill the libido.

Jane: On the other side of ‘not acknowledging that people want a sex life’ is that if women weren’t ‘distressed by their symptom’ (low libido) they don’t have a problem. Women are sent to me by husbands and whoever to be ‘fixed’. Problems with dry vagina can be resolved by using oestrogen in the vagina. Fixing menopausal symptoms can fix sex issues just by allowing everyone to get more sleep and be less stressed. Testosterone can ‘turn up’ sexual feelings a bit for women where everything else is alright. It won’t overpower depression. Low doses only are safe. High dose patches etc have been taken off the market for good reasons.

Naomi: There can be troubles with partners who have a desire mismatch. Sometimes women come to see me for help because their libido is improving after treatment and they’re excited, but their partner is very unhappy – they were actually content with the low amounts of sex they were previously having.

Sharon: There can be issues with partners wanting people to stop taking their meds so that mania would happen and they would have lots of sex. People can be very vulnerable.

Q. How can we better support people who are having sexual problems due to disability eg. stroke etc. ?

Naomi: Unpacking penis-in-vagina as the only form of sex is helpful but so complex! There are huge cultural issues – emasculation issues – some men feel anxious about not using their penis the way they’re used to. I talk to people about having more ideas and opening up more options. You don’t have to orgasm! Presenting this as an expanding of experiences, not a loss of options. A freely available resource is the Masters and Johnson sensate focus exercises. I start the conversation – what do you think sex is? “If my penis didn’t work today, I’m not a good lover” – well, there’s thighs! And hands, and eyes, and so on. Being sex positive. Exploring what you can do – especially for people with physical disability. Learn what your limitations are. It’s not about what you do, but how it makes you feel. There’s an adjustment process to illness or disability – “This is not the end”. Another suggested resource “Sexuality Reborn” a DVD about disability and spinal injuries and sex, contains suggestions for comfortable positions and so on. Available from the SHineSA resource library.

Kelly: It’s about using bodies in alternative ways. Many women especially are taught that masturbation is masculine and selfish. The reality is that trying to live up to a partner’s expectations while learning about your own body can be exhausting.

Greg: You know the Old Testament story of Onan – who incurred the wrath of God for spilling his seed on the ground? In the hospice, they have a budgie called Onan.

Sharon: Carers, especially those caring for people who have had strokes, or war vets and so on are striving for relationship and dignity with their partner. Systems often focus on the burden of caring, helping you with your tasks. Carers themselves want support with intimacy, connection, maintaining dignity.

Sonia: Working with pain. My role is often about the mechanics – being able to achieve or tolerate penetrative sex. Often women are motivated only by love for their partner, not personal desire. Women are often at their wit’s end and don’t want a bar of sex. Mine is a very clinical approach, stretches, relaxation – taking the sexual side away from it and approaching it like you would any other group of muscles. In my work I differentiate between ‘intercourse’ and ‘outercourse’. I refer to sexologists such as Naomi for the psychological aspects.

Naomi: It helps to de-medicalise issues like vaginismus. The process is often:

  1. Take penetration off the table for now
  2. Work on communication
  3. Rebuild normal patterns of arousal and pleasure
  4. Undo the aversion

It’s important to find time to feel sexual that’s normal and not medical.

Jane: The importance of understanding limerance, that sexual desire changes as relationships develop. A loss of libido can be about unrealistic expectations about desire. Sometimes ‘decision driven sex’ can be a key resource – Rosie King, Where Did My Libido Go?

Kelly: With disability those expectations are often reversed. For example, I was once phoned by the head of the support agency who provided care for me, after sex at 22, in my own home. They were smirking. I told them the phone call wasn’t appropriate. Their response was “We thought you were a good girl”. My agency called the residential care agency who provided support to the man in question (who had an acquired brain injury). They discussed the situation and decided to resolve it by no longer providing transport support for the man to visit me. It was only many years later that I discovered this breach of my confidentiality and collusion by two support agencies to prevent a sexual relationship between consenting adults.

Nick: I was once working in consultation with SHineSA in a supported accommodation situation, providing education about ‘safe sex’. Young men were taught to put condoms on by using broomsticks as an example. One night, two of the young people got together. The workers discovered them in the same bed, with two broomsticks in the room with condoms fitted to them! It’s important to educate in relevant ways so people understand! Just because you do have to educate in different ways, shouldn’t mean people get excluded.

Tabitha: Porn can be a huge issue in that it sets up expectations and distorts the sexual norms. Young men are now often confused by pubic hair on women. There is an expectation of penetrative anal sex. The accessibility of porn and lower age of sexual onset can cause problems. The most effective recommendation I have to support people’s sexual functioning is exercise. It boosts oxytocin and serotonin, the happy hormones. Exercise has been shown to have extraordinary outcomes for cancer, health, mental health, sexual health. It is more effective than antidepressants by far in trails. It’s also good for body image and so on. There’s debate about radical mastectomy vs breast conservation surgeries. All women have different relationships to their breasts and sense of femininity and sexuality. The biggest single factor that impacts on a woman’s health, body image, and happiness post mastectomy is their partner’s response to the surgery. Weight gain associated with chemotherapy and hormone therapy is often more deleterious than mastectomy to body image. It’s important to ask questions, identify problems, and refer to a useful network. None of us can ‘do it all’ or be the one answer.

Sonia: For men with prostate cancer, physio can help hugely with bad pain. Anatomically, men are similar to women with regards to their pelvic floor. Pain can cause a pelvic spasm that perpetuate pain. Relaxation and sometimes dilators can help. Retraining the brain about responses to pain – to prevent the muscle tension. Pelvic Floor Physiotherapists work in private practice and through public hospitals – they are available at Flinders, the RAH, Lyell Mac and so on.

Greg: Men going through prostate cancer often have to deal with a life threatening illness, plus feminisation by the meds, plus loss of libido (due to anti-androgens). Many of the meds cause terribly side effects such as fecal incontinence and so on.

Tabitha: The psychology is important – masculinity, erections, identity, sense of self, and confidence all have a relationship. Men who undertook a structured exercise program had 50% improved erectile function – for much better outcomes this must be started as early as possible post treatment, and also to maintain erections via masturbation. Women going through radiotherapy are often not told that their vagina can seal shut if they do not use it – with dilator etc. There is a real ‘use it or lose it’ aspect to this.

From the audience: As mental health workers we are witnessing sexual exploitation, abuse, risk taking, but we’re not supposed to talk with our clients about it. We’ve been told us talking to them about sex is akin to prostitution. We’re not allowed to discuss safer sex. Clients are not supposed to be having sex.

Sharon: The Mental Health system is obsessed with risk. There are huge issues with risk management marginalising people, othering people, and increasing risks. Many other issues compound for people, such as poverty, grief, abuse, low self esteem.

Kelly: Often the problem (refusing to discuss sex, othering the client) doesn’t come from the workers, it comes from the bosses.

Q: How to support people dealing with chronic illnesses, where low energy levels impact on libido?
Tabitha: Fibromyalgia is common in cancer. Reconditioning program – twice a week in a gym with a personal trainer for 6 weeks – the difference is extraordinary. We talk about “A new self in chronic illness” – it’s key to reset expectations. Being chronically stuck in a world where you’re trying to be who you used to be is horrific, people become distraught and self destructive. Guided programs are key! People are too sick and overwhelmed to do this on their own.

Sharon: Start early! Exercise after de conditioning and weight gain is much harder for people.

Kelly: Exhaustion and muscle fatigue are limiting. Nick and I have found working activities that help with energy and muscles into the sexual wind up process eg stretches, massages, some forms of exercise – become part of sex. We take a very physiotherapy approach to the nits and bolts of muscles and energy. There are many resources available on the net and youtube! For example, if you need resources about having sex for a client in a wheelchair, google wheelchair sex positions, you will get a lot of information. This kind of sharing of lived experience is very valuable for people.

Q. Kelly, where do things stand with the decriminalisation of sex work in South Australia?
Kelly: Stef Key from the Labor Party was recently involved in drafting bills to protect rights. It didn’t pass. For more information about sex work and disability, there’s an organisation in NSW called Touching Base. Touching base was started by Rachel Waters to teach sex workers how to engage with clients with a disability. SIN (Sex Industry Network) also do good work in this area. People with disabilities may seek out sex workers for different reasons – and some absolutely do not want it, or it would have detrimental effects on self esteem and so on. It’s a complex story with many different aspects. Choice is important. There is some danger in looking at sex work only through a disability perspective.

Someone mentions that clinic 257 (the STD clinic at the RAH) codes sex work as a community service. Kelly argues against this, using the example of sheltered workshops being moved out of industrial relations and into the community services bracket – that this creates a damaging view of disability.

The wrap up – that it’s helpful to build a vocabulary to have these conversations. Redefining our ideas about ‘normal sex’ is also crucial. And that our obsession with normality makes us slaves to our cultures.

This was an exciting forum, very encouraging in light of the work I’ve been doing regarding Emotionally Safer Sex. I’ve also recently completed some work with SHineSA, supporting the development of training about sexual health specifically for mental health work. I’m looking forward to seeing the first round of training offered later this year and hope that this goes some way towards busting stigma and starting good conversations for people. I’ve also decided to share my own experience of sexual health counselling. There is much yet to be done!

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