Disability is a natural part of human variation and an aspect of diversity, not something to be feared or avoided, pitied or overcome.

This year, a record number of LGBTI people marched (and wheeled!) in the Sydney Gay and Lesbian Mardi Gras parade. The progressive statistic—Over 150 people with a disability!—was enthusiastically championed in article headlines and Tweets by various LGBTI and mainstream media sources.

The popular visibility and heterosexual palatability of Mardi Gras afforded a rare opportunity for discussions about the intersection of queerness and disability to penetrate circles and discourses where they would usually go unheard. However, as is often the case with intense bouts of media popularity, the headlines receded as quickly as they had arrived.

Such a vacillating interest in the identities and oppression faced by queer, disabled people is not a new discovery for queer, crip activist, writer, poet, performer and public speaker on LGBTI and disability rights, Jax Jacki Brown. Jax uses a wheelchair and is in a relationship with a woman. She is eloquent, passionate, and fed up with others speaking on her behalf.

We talked with Jax about disability, the role of the body in gender identity, and the ways in which queer, disabled people—especially queer, disabled women—are well and truly over their sexual erasure in media and popular culture.

I feel a lot of current discourse around gender identity does explore the physical, relational elements of gender identity (e.g. I may be happy in my womanhood partly because I have breasts, and I like my breasts because I like the feeling of those breasts against another woman’s breasts). But as an activist who is both queer and disabled, you must think about the physical body as a site of queer desire a lot. Is this trend in discourse something you have noticed? And if so, do you think that it is important to bring back questions of physical sex and sex acts into discussions about gender and sexual identity?

This is an interesting opening question, and I think a potentially dangerous question. I want to be really clear, I think gender identity is really important and what we really need to be talking about. I do think a lot about the physicality of bodies, power and systems of oppression and exclusion, and who and how people are excluded.

The type of body we find desirable is heavily influenced by the society in which we live, and this is true to an extent I think even for us queers. We are conditioned in this “ableist” world to fear disability, to find nondisabled people attractive. The able-bodied, slim, healthy, young, white, gender-conforming person is the image of who is desirable and what is attractive. This image is perpetuated in the media, in advertising, in the very narratives and stories we tell and are told about who is desirable and who is worthy. These narratives perpetuate the idea that disability is the worst thing that can happen to a person, that if you acquire a disability you are a burden on the system, that no one could ever love you. I think this myth continues to be perpetuated in the LGBTI community partly because queer spaces are often inaccessible, in dark rooms up a flight of stairs, so we are not used to seeing people with disabilities out and about partying on Saturday night because disabled people literally can’t get there.

I think we need to talk about power, structural power and the need to create systemic change. One in five people in Australia have a disability and 90% of people will acquire a disability at some point in their lifetime. Disability is a natural part of human variation and an aspect of diversity, not something to be feared or avoided, pitied or overcome.

Sex is always different because people are always different, but if one were to only watch Hollywood representations of sexual encounters, they might assume that sex is a white, skinny, straight monolith. Given the dearth of filmic representations of heterosexual, disabled people having sex, what do you think are the chances of an increase in representations of queer, disabled women having sex any time soon? How else might we change cultural perceptions of sexual desirability and ability amongst disabled people?

This is a great question! If we see disability and sex represented at all in the media it is about heterosexual disabled men’s desire and how disability has robbed them of their masculinity and therefore their sexuality. We don’t see women with disabilities and our desires depicted at all, let alone queer desires and sexuality. I want to say that the way to increase nuanced, interesting and hot representations of queer, disabled sexuality is to make the films ourselves but that assumes that we all have access to resources and power and the means to get our alternative messages out there and that mainstream media organisations would be receptive and willing to screen queer, disabled, sexual content which I highly doubt they would be.

Representations of disability in the media currently can broadly be said to fit into two camps: the inspirational narrative where a person with a disability is depicted as being inspiring for doing nothing of note at all just for existing; or conversely where they are viewed as tragic or something to be pitied. One of the ways we change these metanarratives of disability is to understand that disability is not an individual or personal problem, it is not a medical issue, it is not something we need to overcome, minimise or fix but it is a socio-political issue, an issue of human rights.

Many of the barriers which exclude people with disabilities, which limit us from living full and equal lives are socially created things, such as inaccessible buildings, inaccessible transport, low levels of employment, lack of housing options and so on; but also the ideas people may hold about disability unconsciously, the stereotypes they may have absorbed through the media which also shape our interpersonal interactions with others, our access to relationships, to friendships, and to social and community connection and belonging. It is a social understanding of disability—known as the social model of disability—which really needs to be understood by the wider public.

What are some more examples of times in which your disability has affected your ability to participate in the queer community?

Most blatantly it is being excluded from spaces, due to stairs or other access issues. Often it is more insidious and manifests as people never having thought about who is not in the room—who is missing. It is the assumption that I just don’t belong in queer spaces. I have been in a queer bar, flagging butch lesbian pretty hard, and had a woman, who looked just as dykey as I did, say “honey, you do realise you’re in a gay bar?” as though I must surely be confused. It is this assumption that queer people with disabilities just don’t exist because people with disabilities are presumed not to have asexuality.

Obviously, there is a big difference between how our culture views the sexuality of people with intellectual disabilities, and with physical disabilities. While a presumed lack of sexual ability is the main misunderstanding about people with physical disabilities, a presumed inability to give sexual consent is often attributed to people with intellectual disabilities. Clearly, many people with intellectual disabilities are able to give consent to sexual relations and relationships. But is it right to say that some people with intellectual disabilities are not able to give sexual consent? Could you expand on this area for the benefit of readers whose concern comes from a (perhaps misguided) place of wanting to protect vulnerable people?

Adults can consent to sexual expression and exploration. Two or more consenting adults should be supported to have sex if they want to. The consensual sexual expression between adults is a human right. People with disabilities need to have access to comprehensive, understandable sexual education which includes information on desire, sexual health, consent, learning about your own body and what you want, how to say yes as well as no.

The idea that people with disabilities cannot give consent and that they should not be taught about their bodies or taught about consent is deeply ableist. I have real issues with the idea that disabled people are inherently vulnerable and that we should protect them because of this presumed vulnerability. It’s infantilizing and doesn’t treat people as adults but presumes they are perpetual children and shouldn’t expect to grow up and gain levels of independence. We should educate, empower, and support them—not presume them to be vulnerable and incapable from the outset.

Further, that queer, female disabled people have less access to sexual support services is a reflection of patriarchy and its intersections with ableism, which create this idea that women cannot possess asexuality and that disabled people do not have one, and so this intersects in the lives of women with disabilities when we are just presumed to not have any sexual agency or desire.

What are the best things about being queer and disabled? What makes you proud and happy to be a queer, disabled woman?

Being queer and disabled has allowed me to live life outside the box of social expectations. It’s enabled me to question deeply society, bodies, power, identity; to work out what I really think is important, what I’m really passionate about. It has enabled me to become unapologetic and proud.

Also, people with disabilities are better lovers, just FYI.  We are because we are inventive because we have to be more experimental; we’ve had to think deeply about our bodies, desire, consent, power, about resilience. Knowing yourself and your sexuality, loving your body in a world that tells you that you must feel ashamed is an act of resistance, an act of pride, an act of self-love and reclamation.