A New Coming Out Story
There’s something you don’t know about me, that I want to tell you because it’s important. Maybe some of you are aware of it if you know me quite well, but even that isn’t a guarantee.
It’s not that I’ve kept it hidden, so much as it took me this long to realise it about myself. I hadn’t seen it until recently, and have just begun to realise that naming it is not just about me. It’s about a whole community and a lot of misconceptions and policing out there about who does or doesn’t belong to that community. It’s about realising that belonging to any invisible minority means moving through the world largely unseen, and naming and claiming that identity is an act of resistance to our collective erasure.
This has been an ongoing process for me over the last few years. It’s taken me time to get here, to this place where I can finally, comfortably, name a part of my identity that has applied to me since birth. I’ve needed time to consider why I didn’t notice it before, to wrestle with why I felt it wasn’t a legitimate claim, and to explore different terms and consider what fits and what doesn’t.
It’s a familiar journey—one I’ve been through before.
I came out as bisexual when I was fourteen. The term was new to me and blew my dualistic understanding of sexual attraction. Before I had the word ‘bisexual’ I knew I liked girls. I knew it, but I also sometimes liked boys and it didn’t occur to me that my preferences were valid. Attraction was not part of the school curriculum when they did sex education. It was all biology and the assumption that we were all straight. Learning the term ‘bisexual’ was like a beam of light busting open the tiny boxes I’d been taught about.
And it fit until it didn’t. It fit until I realised that identity isn’t just about what you choose for yourself but also about how the people and society around you understand a label. As I grew up and began to meet other folks in the gorgeously diverse QILT2BAG+1 community, all my ideas of dualism got blown to bits. Gender, sex and sexual orientation didn’t exist in binaries. They became explosive spectrums of colour. As I did drag and explored various relationships, I gravitated to the term ‘queer’. It covers gender and sexuality, and its very definition is about ambiguity.
When I first heard the term Spoonie, coined by Christine Miserando, I didn’t have quite the same reaction as I did to ‘bisexual’, but there was definitely something there. It made a lot of sense for personal reasons, despite not having a chronic illness like Lupus or Crohn’s or CIDP. I knew what it felt like to have diminished energy, unpredictable pain and unexpected physical limitations. Yet, I was reluctant to claim this identity, despite my lived experience of having limited spoons.
There is an idea we are all taught about what ‘counts’ as a disability. It’s an idea that we all internalize, regardless of who we are, because we live in a society with a Dominant Ableist view.
Dominant society establishes what is ‘normal’ or ‘average’ and teaches us to view everything else as ‘other’. You are either this or that. These are the options. There are no others. This dualistic view of sexuality got smashed to bits for me with the term bisexual. I could always see the heteronormative, cis-gender narrative of Dominant society because I knew I didn’t fit it. I knew I wasn’t interested in marrying a man, and I also hated the ways I was bullied throughout Junior High for not conforming to a very narrow expression of being a girl.
I didn’t yet see that the Dominant Narrative was presenting an equally narrow view of what was ‘other’, which was why it took me some time to get to ‘queer’. I was taught you are either straight or you are gay. Growing up, the only examples I saw of people who weren’t straight were:
Flamboyant openly gay white men who never kiss or if they do kiss it’s a Big Deal because MEN! KISSING! — see: Nathan Lane and Robin Williams in The Bird Cage and Kevin Kline and Tom Selleck in In & Out.
Implied and coded stereotypically ‘butch’ but not explicitly out white lesbians or white gender non-conforming women who confused the crap out of me and also made me feel a special kind of longing I couldn’t name so it was little wonder I came out as bisexual within days of learning the term — see: 1980’s Annie Lennox, Bee Arthur as Dorothy in the Golden Girls, and the character Darlene Conner from Roseanne.
David Bowie in the Labyrinth. I didn’t know if I wanted to be him or was attracted to him. This was, actually, the first representation of queerness I ever encountered, although I wouldn’t ‘get’ that until my twenties.
Dominant Culture presents the ‘othered’ as a monolith, and yet, as anyone who has been ‘othered’ knows, we realise our glorious difference because we don’t fit the monolith of Dominant Culture. But recognizing and being able to name our otherness varies from person to person. It‘s difficult for us to see the full multiplicity of our own humanity and learn to live at the intersections when we are constantly presented with narrow, dualistic representations of complex identities and embodiments.
Dominant Culture operates on a Medical Model approach to health and wellbeing. The Medical community sees ‘conditions’ and ‘symptoms’ rather than full human beings, and a person is either able-bodied or they are not. Full-stop. A formal diagnosis from a medical professional is viewed as essential, irrefutable proof of where an individual is on this binary, as if someone’s lived experience can never be enough. Dominant Culture reinforces ableism by demanding badges, certificates, or medical authority to validate a reality someone has been living with for months, years, or even their entire lives.
In my case, it has been my entire life, which is probably why it took until I was twenty-five for me to learn there is a named condition for the very particular experiences of my body. It wasn’t until the age of thirty-three that I got an ‘official’ diagnosis. The things I’ve lived with, I’ve always lived with, and so they are not something I’ve had to ‘adjust’ to. The impact on me hasn’t been overt to observers. When you are born with a thing, that’s just the way your body is. If it’s not obviously visible, you don’t realise it’s unusual unless someone points it out.
It was a sports massage therapist who told me I was hypermobile, and as soon as I researched it, I knew she was right. I’d found an explanation for the dizziness, extreme fatigue, and migraines I experience. I suddenly had a reason for the many times my neck had seized up, so painfully I couldn’t breathe, and why I was intensely averse to needles. It also explained my massive appetite, why I developed celiac disease at nineteen, and why I had terrible skin problems as a child.
All these things have just been part of being me, and it has only been as different people remark on them as odd or maybe worth looking into, that I’ve begun to see that what is normal to me is not so for others. What I have learned to live with because, well, it’s just how my body is, others see as concerning, strange or alarming. For example, I never really mentioned how easily I get dizzy to anyone. I figured everyone gets head rushes. No big deal. I didn’t realize that most people don’t experience head rushes on a near daily basis, sometimes multiple times during a day, and sometimes when just standing there, not even really doing anything. It was my wife who indicated that this was unusual, and sure enough, when I consulted the good old Interwebs, I could add it to my list of Living A Hypermobile Life.
Honestly, it’s a real mixed bag and increasingly I’m realising just how much of my experience is impacted by this condition. My wife encouraged me to finally go to the hospital for the heart palpitations I have had for as long as I can remember, adding another symptom of this condition to the heap. My heart drops extra beats sometimes, just because it can.
I also recently learned that anxiety disorders are incredibly common for hypermobile people. I was diagnosed with Panic Disorder at seventeen, and though I recovered from it and there were other contributing factors, the anxiety has never entirely gone away.
I’ve long known yoga is really bad news for me but didn’t realise why until I saw a physiotherapist who explained that excessive stretching is something I should avoid. Suddenly I understood why I was in so much pain for so long after gym classes where we were made to stretch for ten to fifteen minutes, and why my attempts at yoga resulted in searing hot pain in my shoulders and back.
With each new bit of information and ‘aha’ moment, I have come back to this question of identity. I have spent months considering and thinking about why it is I am only now, at thirty-four, realising I belong to the Disability Community just as much as I belong to the QILT2BAG+ community.
This question is actually quite easy to answer: I don’t think I have a claim to disability because I don’t fit the ‘idea’ Dominant Culture has taught me of what a disabled person looks like.
This is an idea that has been reinforced again and again, and taken a lot of unlearning on my part. Despite that massage therapist running me through the tests and telling me that yes, all indicators point to hypermobility and my follow-up research confirming it, I have had at least half a dozen medical professionals raise their eyebrows and ask, “Did you get a formal diagnosis, or are you just flexible?” I’ve had to list the symptoms as ‘proof’ and still was told, until I saw a specialist and received a formal diagnosis, that no one was really buying it. My word was not enough. Either that or I got blank stares from physiotherapists, massage therapists and doctors who have never heard of such a thing and then treat me like some fascinating specimen to examine.
Each time this happens I encounter in myself the very limited monolithic ideas we have been given and continue to perpetuate about ability and disability. This notion of disability as something that needs to be legitimized or diagnosed by the medical community is how Dominant ableist views are reinforced. I struggled with whether or not my disability ‘counts’ because all my life I’ve been taught to see Disability through the narrow lens of Dominant Culture.
The near-universal symbol of disability is a stick figure on wheels. When we remember to talk about accessibility, the conversation is almost always about wheelchair access, sometimes about sound amplification, and very occasionally about sign-language interpreters or closed-captioning. Disability is generally limited to wheelchair users, and sometimes expanded to include the Blind and Deaf communities, but almost always focuses only on what is “obvious”. Everything else is suspect because that’s how ableism works. The ableist view is that able-bodied means you have all your limbs and they all function in a particular way, and that if you are disabled then you can’t walk or you’re missing a limb, but regardless, you have a ‘fixed’ disability, and you can’t claim the identity for yourself, it must be ‘diagnosed’.
This is, of course, absurd. The Disability Community is as vast a spectrum as the QILT2BAG+ community. Disability can be temporary or permanent. It can be a single thing or an array of things. It can look super obvious and it can be entirely invisible, something you might never know unless someone chooses to tell you. People with the same condition will experience it differently. Some people have multiple conditions. Some people have lived with something since birth while others have not. What is central to one person’s experience of being disabled could be a secondary aspect to another person. Sometimes disability is caused by infrastructure that doesn’t accommodate or consider different needs (Ahem, Pro Tip: plastic straws are necessary for some people), and sometimes it’s how a condition disables a person due to chronic pain, joint dislocation, or paralysis. And disabled people also have sex, have children, raise families, are queer, transgender or intersex, are not white, go to school, travel, work, and live happy, fulfilled lives.
There is no singular representation of Disability, just as there is no singular representation of Queer.
So this is it. I’m claiming it: I am a disabled person.
Sometimes I can’t walk or take stairs because the muscles connecting to my knee are too tight or a bone in my foot dislocates. Sometimes I am floored by a migraine or I can’t actually move my head because a vertebra is pinched or the muscles in my neck are knotted. Sometimes I lose the grip in one of my hands because a bone has dislocated or a tendon is inflamed. Sometimes I’m so fatigued or have such brain fog that I just need to sleep, to give my muscles time to heal. Sometimes I move ever so slightly and a muscle or a tendon ‘catches’ and the pain is breathtaking and I have to stop anything I’m doing to attend to it. Some days I’m in pain all day, and some days, I’m not. This is my reality and has been my whole life.
And the thing is, it’s fine. This is part of what makes me who I am. I do not need to fix it and don’t need advice or tips2. I’m just saying: I have a disability.
It’s taught me a lot, and continues to teach me a lot. It helps me to see and unlearn implicit biases handed to me by the society and culture in which I was raised. As I work with relating to my body and it’s shifting capacities and limitations, I’m getting better at understanding the relationship between self-care and community-care. Realising that sitting for long periods of time aggravates my condition has invited me to explore how meditation can be taught in more inclusive ways, embracing a diverse range of embodiments. I also carry the intention to not view a single person as the authority or sole representation of the experiences of an entire community. But mostly, it reminds me to be kind and compassionate, to listen wholeheartedly and remember there is so much we cannot see just from looking at someone.
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I would like to extend my gratitude and appreciation to Jessica Kellgren-Fozard for her amazing videos. Jessica, your work in the world is so important and incredibly valuable. I could not have come out as disabled, and feel so comfortable claiming the identity if it wasn’t for you. *fistbump* from one Spoonie to another.
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This blog was originally published on Medium.
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Queer, Intersex, Lesbian, Transgender, 2-Spirit, Bisexual, Asexual, Gay and +:Pansexual, agender, genderqueer, non-binary, androgyne, polyamorous/non-monogomous, kinky. Plus sub-categories like bear, butch, lipstick, tomboi, puppy etc. It’s a beautiful world and there are as many ways to be human as there are people on the planet.
Remember what I said about Yoga being awful for me? Yeah, that’s a common suggestion which I’m learning most Disabled folk get a LOT and like, just stawp, please. This is part of undoing that Ableist Narrative we have all been given. Don’t treat disability like something that needs to be ‘fixed’. Unless someone has asked for advice or support, do not list all the ways they could be ‘cured’ or ‘healed’.