Key Takeaways
- Sexuality is a valid and important part of life for everyone: People with disability have the same rights to relationships, sexual expression, and education. Open conversations help reduce stigma and support informed, respectful choices.
- Lack of education creates greater risk than sexuality itself: When people don’t have access to clear, accessible information about consent, relationships, and sexual health, they are more vulnerable to harm. Education builds confidence, safety, and self-understanding.
- Support should balance safety with independence: Providing guidance, resources, and safe spaces for discussion allows people to explore their identity while maintaining appropriate boundaries. Respecting choice while offering support leads to healthier, more positive outcomes.
As we navigate the complex world we live in, it’s quite often that we find topics that seem to raise more questions than answers. Taboo issues and stigmatisation can decorate many of our cultural and social conversations, but it’s important to strive for clarity and increased knowledge.
Whether it’s sexuality, sexual health or sex, we can feel that information is protected (or hidden). To remove the stigma of these things in our world for all – especially for people with a disability – we need to lead with thoughtful conversation, share an abundance of correct information and deliver all of it in a safe space. Accessibility to this information then needs to be highlighted.
Seeking support from an organisation like SECCA is a great place to start. Standing for Sexuality, Education, Counselling and Consultancy Agency, SECCA is changing the landscape of all things sex in the disability sector.
Kimberley Care Group sat down with the marvels at SECCA to learn, not only how best to support those with a disability, but how to lead with a human-centric vision to help break the taboo.
Breaking taboos of sex, sexuality and sexual health
In simplistic (almost reductive) terms, SECCA is an organisation that offers a plethora of resources – with easy-to-understand information – to support those with a disability to boost their knowledge on all things sexual health, relationships and sexuality.
With counselling, educational workshops, consultancy, advocacy and a range of accessible materials to gain support from, SECCA is a trailblazing force in a – still relatively – untouched world of sex and disability.
The world of sex has always felt slightly forbidden. Many people can feel shy or limited in their experiences, or knowledge, about what it all means. Speaking to Jordina Quain, Education Director at SECCA, we wanted to dig deep and find out why sexuality, sexual health, and the act of sex remain such taboo topics. And, not just in the disability sphere.
Quain says that “the big influence of Catholicism in Australian society” has influenced the dichotomy of what is right, and what is wrong. Other religions and faiths have played a role in defining a one-size-fits all approach in terms of sex and sexuality. For example, many interpretations of religious literature might define sexuality as being solely heterosexual, which we know is not the case. This has meant that the previous conversation of sexual liberation has been rather biased.
The topic of sex has been related to procreation which has meant deviating from this as the principle of sexuality and sex has felt jarring in the social discourse. Of course, this is getting a lot better, but there’s still a long way to go.
In terms of sexuality and disability – “the double taboo” – Quain believes that the taboo comes from the perceived risks of having a disability and exploring sex and sexuality. Moving away from institutionalised living, those with a disability are, in many people’s eyes, exposed to more services and therefore more risks such as sexual abuse. But there’s the issue, many people focus on the risk elements and almost remove the human capacity from someone with a disability. As “taboo and shame are interlinked, there’s limited education around sex which is what puts people at risk,” not the fact that people with a disability have sex.
Quain talks about the myths in the disability sphere, such as, “those who believe that [those with a disability] shouldn’t have sex; that they don’t have a sexual drive; and that they cannot have sex (physically, mentally or emotionally).”
“As a culture, we struggle to talk about sex and sexuality in general” and without knowing how to work and talk in this space, the taboo will remain rigid, and unbroken. We need to talk about sex, especially in the disability world, as that’s the only way to reduce the stigma and to make the conversation fluid and comfortable.
The real risk of sex in the disability sphere
Above, we mentioned the ‘perceived’ risks of sexuality and disability, but truly this comes from a place of defining those with a disability as almost childlike, sexless beings, without adult thoughts, feelings and natural instincts (such as a sexual drive).
With or without a disability, “the main risk is the lack of education [around sex]”. Everyone needs to protect themselves in some form from unsafe situations but to do this, we need to understand “our rights, our body parts, what a healthy relationship is, self-worth and if something happens, who you can talk to [about it].”
The risk stems from the discomfort around sexuality and talking about it. Quain notes how knowledge might only be shared when a challenging experience occurs such as an accidental pregnancy to learn about safe sex. While there are risks – for everyone in this world – for things like sexually transmitted infections (STIs), consent and unhealthy relationships, “the bigger problem [for those with a disability] is that it can feel like there is no one to talk to or learn from, due to being neglected as sexual people, historically.”
How can we promote freedom of sexuality?
Opening up the conversation to discuss sexuality and sexual health is the first port of call, but “there’s no true script.”
Education and conversation are the pinnacles for promotion of sexuality, sex and sexual health inside as well as outside the disability world. SECCA believes that using resources with imagery can be very helpful as well as teaching the language to discuss body parts – cultural and medical terms – as well as the language for protective behaviours. It removes any ambiguity around consent whilst also reducing the sexual shame that once came from creating these ‘hidden terms’ for our genitalia.
Though, it’s important to remember that “boundaries and expectations keep people safe.” It’s important to not confuse freedom with ‘say yes to everything’. Freedom is about someone having the ability to explore without pressure, prejudice or limited (or incorrect) knowledge.
Talk about what it means to:
- Be loved the right way (remembering that everyone has different sexual preferences, too)
- Be touched
- Be sexually explorative
- Feel safe (alone or with others)
- Have a question and know who to go to for support or further knowledge
- Understand the different contraception options
- Understand the different ways to communicate (verbal, emotional and physical)
- Feel sexually empowered
- Use sexual aids such as a vibrator
For Quain, “It’s about balancing the duty of care with the dignity of risk. The fear of being perfect can stop us from allowing people to be people. We’re all flawed, and having a disability can mean people are at more risk, but freedom should always be promoted through a balanced outlook.”
“Preventative education alongside sexual exploration and freedom can be the best outcome. In the disability sector, it seems the conversation revolves around the ‘bad’: the risks, the dangers, rather than the good. Focus on the goodness of relationships, connecting with others, sex as a pleasurable act and sex as stress relief” to ensure freedom of sexuality is promoted, and more importantly, achieved by all.
Everyone has the right to this.
Supporting someone with a disability to make healthy sexual choices
Quain says that while boundaries keep people safe, we need to ask ourselves – if we’re supporting someone with a disability – whether these boundaries, or ‘rules’ we create (as an informal or formal support) would be made for someone who does not have a disability?
We always need to make sure we treat everyone fairly, for example, if we work in a group home setting, everyone in this group home shares the same rules such as ‘no visitors past 9.00pm’. Ensuring our boundaries are age appropriate, too, is especially important. If the person we support is under eighteen, then of course our ‘rules’ can be a bit more rigid.
“For the most part, [we try] to educate [people] before things get to a ‘high risk state’”. This means educating before they have a negative or unwanted experience.
“Create a space for those to discuss sexuality – the negatives and the positives – [and] everyone will be aware that these conversations, questions, ideas, will be openly encouraged [which] ensures safe and happier sex and sexual health.”
It’s also important to remember that if you support someone who enquires about these things, and you don’t feel comfortable answering – that’s your prerogative. But, we must ensure the conversation doesn’t close because of this. Try directing the person to someone else to talk about it, or direct them to resources such as those available through SECCA.
What resources are available?
The great news is, there is a lot available for people wanting to learn more about sex, sexuality and sexual health specifically in the disability world.
SECCA, as an organisation, is a place where you can go for many resources such as counselling, educational workshops and the option to ‘pick the brains’ of sexual health experts who are based within or outside the organisation.
Through SECCA – using SECCA as the central resource – we can recommend books, videos, YouTube channels, guides and open conversations to learn more about supporting someone with a disability in sexuality and sexual health. “People just need a guiding hand [to find] reputable, fact-based and experience-based resources.”
Final Thoughts
With something as complex and multifaceted as sex, it means there won’t be a cut and dry answer to all of our queries. But, while we move through this grey area, the main thing we know is that using an individualised approach and opening up the channels of communication is how we can best support everyone in relation to these – sometimes challenging – topics. Open and honest conversations are at the heart of the stigma walls falling down.
If you’d like to find out more about this topic, or have a specific question in mind, then reach out to the team at SECCA today via their email: admin@secca.org.au
You can book a video consultation so that they can link you with the most appropriate educator and/or counsellor, learn new strategies, find relevant support as well as link you or someone you know to a workshop or other resources.
If you want to remain anonymous with any questions you have around sexuality and sexual health, you can contact SECCA via phone: (08) 9420 7226. They will always find a way to support.
If we lead without judgement or shame-fuelled-language, the taboo will end for good.
References:
https://academic.oup.com/edited-volume/27980/chapter-abstract/211655176?redirectedFrom=fulltext
https://www.betterhealth.vic.gov.au/health/servicesandsupport/disability-and-sexuality
https://shq.org.au/2022/09/common-myths-sexuality-disability/
https://www.tandfonline.com/doi/abs/10.3109/09638280903419277
https://www.tandfonline.com/doi/full/10.1080/09688080.2017.1336375