There remains a heavy taboo around sex and disability in our culture. Research by the charity Scope found that only 7% of non-disabled people have dated a disabled person, while disabled young people are let down when it comes to sex education, often receiving none at all, or nothing appropriate to their needs.

The writer and activist Penny Pepper, who writes extensively about disability and sex, including in her erotica collection Desires Reborn, told me: “If disabled people aren’t having sex, they would like to. And the reasons they’re not are overwhelmingly to do with the barriers in society. I’ve known quite a few disabled people who [because of this] have resigned themselves to never having sex.”

This isn’t just wrong because of the obvious: sex is fun, enables procreation and for many people is vital for wellbeing. It’s also wrong because it’s part of a process of denying disabled people full humanity, which makes it easier to marginalise us in other ways.

I’m invisibly disabled, so I don’t experience the stigma around sex that many visibly disabled people do. But I’ve still noticed that when you’re dealing with disability or chronic illness, there’s a sense that sex isn’t something you should be worrying about. You seem to be expected to exist in a shadow world of sadness and struggle, certainly not entitled to enjoy life (especially if you’re claiming benefits, when an appearance of wellness might get you investigated for fraud).

Some disabled people may be fetishised, a complex topic explored by Emily Yates in her documentary Meet the Devotees, but that’s not the same as the wide choice of sexual roles available to non-disabled people. Yates said: “We end up being one of two things – infantilised or hypersexualised – neither of which help with the normalisation of the disability and sex arena. I don’t want to be treated like a child or a ‘bucket list’ item, just the wheelchair-using woman that I am.”

But attitudes are starting to change a little. Mainstream media coverage of disabled people dating and having sex has become more common in recent years, from Channel 4’s The Undateables to a wave of articles exploring topics such as accessible sex toys. And disabled models are being seen on the catwalk and in major ad campaigns.

I don’t give the media much credit for this change, however. I think disabled people themselves have brought it about. Using social media and blogging over the past decade, we’ve built online communities that have enabled us to start taking control of the narratives around our lives. Sex bloggers with disabilities are talking frankly about the challenges – and joys – of sex in their particular bodies: Leandra Vane, who was wrongly told as a young woman that she’d never have sex because of spinal cord issues, writes about myriad ways of enjoying sex with widespread nerve damage, from “thinking herself off” to kink, and says “visibility is key to bringing about mainstream change”.

Charities are making good use of the internet, with the disability-led charity Enhance the UK’s Love Lounge offering online advice on sex and dating. In February, Andrew Gurza, a Canadian disability campaigner and writer, created the hashtag #DisabledPeopleAreHot and saw it go viral. Popular influencers such as the model Mama Cax and the retro fashion YouTuber Jessica Kellgren-Fozard celebrate disabled style (including customised mobility aids), while critiquing non-disabled beauty standards. And Imogen Fox offers frank posts and images about the realities of dealing with illness and bodily difference. Varied representations of disabled life, identity and subjectivity were never so accessible before. On taboo topics, the mainstream media generally operates on the basis of “oh, nobody wants to hear about that”. But in many areas, since the rise of social media, people are making it clear that actually, they do want to hear about it, because, hello, it’s part of their lives.

Facebook Twitter Pinterest ‘Maybe more non-disabled people would explore the idea of dating disabled people.’ Photograph: Dmitriy Shironosov/Alamy

Meanwhile, in the sex toy industry, a few companies are selling products with disability or health conditions in mind, including Hot Octopuss (which I work for), Ruby Glow, the retailer Jo Divine, and Spokz, a disability-led site selling sex toys alongside mobility aids. But most sex toy companies make products aimed at young, non-disabled people and market them with the usual “media ideal” models and tropes. It perpetuates the idea that sex should be effortless, and done in the “right” way, and that those who can’t do it right should just disappear. If you can’t be penetrated, perhaps due to vaginismus (which affects young people too), can’t get an erection (ditto), need help with positioning etc, it’s just not sexy.

But the truth (that most won’t admit until they have to) is that illness and impairment are normal, everyday human experiences. One in five people are disabled. Add people with health conditions that affect sex life (for example, erectile dysfunction), people who are adapting sex to their naturally ageing bodies and … suddenly you’re talking about a lot of people who don’t fit the mould. We can continue to be limited by a fantasy view of what bodies are like and what sex is, one that marginalises most of us at some point, or we can grow up and start to accept each other and ourselves. As Pepper told me: “If a non-disabled person says, ‘Oh no, a disabled person can’t have sex’, well that really says more about that person’s lack of imagination [than anything else]. Sex isn’t just being penetrated with a dick.”

Disability and sex are not mutually exclusive Read more

So what would a more accepting approach look like? Maybe all sex-related products and content would be made with the awareness that one-fifth of their audience may have a health issue that affects their sex life – whether reduced mobility, SSRI-induced anorgasmia, erectile dysfunction, vaginismus, sexual trauma or the natural changes of ageing; these are all factors that change sex, but do not automatically end it. Maybe we’d scrap “sex tips” that guarantee orgasms, or assume all bodies are alike and that penetration is the focus. Maybe more non-disabled people would explore the idea of dating disabled people. And maybe it would enable more of us to accept our own imperfect, ever-changing bodies as they are, throughout our lives, and explore more sexual possibilities without shame – and a bit more imagination.

• Aly Fixter is a journalist and communications consultant who writes about health and sexuality. They head up communications at Hot Octopuss and run Spooniehacker, an online magazine by and for chronically ill and disabled people