It’s 2016, a balmy summer’s evening on Ponsonby Road. 22-year-old me, my boyfriend at the time, and a gaggle of gays had wandered down to see the show – the Pride Parade was on. I was grateful for a respite from the horrors of 200-level biomedical science papers and quietly excited since I had never been to a pride parade before.
People packed the sidewalks. I think we took shelter in a restaurant and sipped on some pride-themed cocktails while we waited for the show to start. I had sunglasses on, but my white cane was in my bag.
As the floats began, we meandered upstream. It was darker, and I was struggling to see. I latched on to my boyfriend’s arm. The music and laughter of the parade faded into the background of my sensory world as I focused on not tripping over the craggy Ponsonby footpath. My cane was still in my bag.
We found a spot near the top of Ponsonby Road. Don’t walk into anyone. Dodge that dog… Seat. Sit. Phew. I was already feeling uneasy. Grin and bear it, Ari – my usual mantra back then. As people oohed, aahed, and haha’d at the floats, I felt a wave of profound FOMO. I couldn’t see anything- this wasn’t fun. I didn’t feel any pride. I felt isolated. I wasn’t celebrating who I was. At that moment, I resented who I was. I resented that I couldn’t see what everybody else saw. I couldn’t fit in.
So I left. I ran. I ran down K’ Road, dodging the benches and people I could make out under the awning lights – I knew the place like the back of my hand anyway.
My boyfriend and maybe a few others came after me. What was going on? Was I okay?
And still, my white cane was in my bag.
There’s a lot to unpack in that story. First, I want to say that my cane is no longer white; it’s black, with a holographic film on it, and it looks bomb AF; thank you very much. I’m proud of my blindness and use my cane always, without any shame.
We’re conditioned as a society, consciously and unconsciously, to discriminate against each other. That applies to the rainbow community – thankfully less so now in Aotearoa – but marginalisation and stigma, even against ourselves, is still an everyday reality for much of the Deaf and disabled community. But it took quite a while for 22-year-old Ari to get to where 28-year-old Ari is on his journey of self-acceptance.
Much like the event organisers, 22-year-old Ari, despite being blind for over two years by then, didn’t know too much about accessibility. He had grown up in a world where nobody talked about disability. He hadn’t had any disabled peers in school or professionally. He saw his blindness as a flaw in himself that needed correcting – which was why he started his degree in biomedical sciences. He wanted to contribute what he could towards retinal medicine, so others in the future wouldn’t have to go through the same traumatic experience of sight loss that he had.
22-year-old Ari didn’t like using his cane because it signalled to the world, “hey! I’m blind!”. He saw it as a vulnerability over which he had no control. It drew attention, and he felt embarrassed and a little ashamed. Because that’s what society, and the lack of visibility of blindness, had taught him to feel.’
Ableism in abundance. When I talk about ableism, I do not mean it as a finger-pointing accusative term. I mean it to describe the inherent biases within the systems that make up our society – social, environmental, governmental, educational, cultural, and so on.
My internalised ableism is why I saw blindness as a problem that needed fixing. It wasn’t like I was a conscious eugenicist who saw disability as invalid and wanted to eradicate it. If you’d asked me back then, I’d have supported the concept of disability rights. However, I knew very little about it. At the time, I had never seen blind people doing things in the world– so I assumed they couldn’t. An assumption that is still commonplace today. Out of sight, out of mind.
Thank you for taking the time to read this, by the way. I appreciate you, whoever you are, proactively putting the disability narrative into your sight and mind, even if it is only a little article. Tell your friends! Widespread awareness is a powerful thing.
In reality, blind people are just as capable as sighted people – but the inaccessibility of the world around us makes it that much harder to be present within it. The same applies to all disabilities! Disability is not inherent within a person. It is created when a person’s experience of the world around them is limited by how that world; digital, physical, informational, or cultural – has been made. It’s a cycle. Access barriers lead to a lack of presence. And so, we as a community are out of sight and out of the mind of the mainstream. The mainstream doesn’t see or experience the barriers we face, so there is no perceived problem. And nothing changes.
Now, those views 22-year-old Ari had about himself and his blindness – mirror what many Queer people go through, too. A sense of shame in one’s identity or how one is. A desire to fix or cure it. I am grateful, at least here in Aotearoa, New Zealand. We have come a long way since mainstream persecution of queer identity – though I’m sure a lot of “othering” remains, especially in more conservative areas.
It makes sense; when you’re disabled- you face access barriers that make it harder to be present and visible in all areas of the world. To represent yourself – whereas a middle-aged, affluent, non-disabled, Caucasian, cisgender male can still be Queer. (and that’s not to villainise them – it was the “old white gays ” who led much of the beginnings of the rainbow movement, even if it was by virtue of their privilege). But I can’t help but feel like the awareness and understanding of disability are lagging.
And yet, as recently as 2018, Stonewall still denies entry to a blind man’s service dog.
Pride is about celebrating ourselves. Our sexuality, our gender. Diversity. Body euphoria. And yet, I see little to no acknowledgement of disability within that diversity narrative.
Does the thought of somebody who may need assistance using the bathroom having a fulfilling sex life make you uncomfortable?
I was reading an article researching for this piece that posed that question – unfortunately, the link was a casualty of my war on digital accessibility. Still, it struck me as quite profound. It made me realise the extent to which society does invalidate the sexuality of disabled people. It’s taboo. The incredible disabled advocates I’ve met through my recidivist advocacy shenanigans are pretty stroppy and master those sorts of issues seemingly effortlessly. But can you imagine how invalidating that would be; how much it would mess with your head if you didn’t have such a high confidence level?
Artists – let’s talk About this. Authentic representation. Creating and platforming our narratives around our sexuality as Queer disabled people is one aspect I see as essential to releasing ourselves from this unspoken taboo.
I am lucky to have a network of beautiful Queer friends all over the country with whom I can go to rainbow events and spaces. Yet, even so, I often feel at least partially socially isolated. It can be exhausting socialising in spaces full of new people who, by the status quo of our invisible disability culture, know nothing about my blindness. Disability is being othered just as queerness was in the past, and many parts of the world still are. So creating environments which aren’t unsafe or exhausting for disabled people to be in is critical to normalising and de-stigmatising disability.
Being both queer and disabled presents its unique barriers. I’m usually pretty upbeat. But the lack of consideration of what my disabled queer friends or I might need in a queer space or event. And often, needing to find ad hoc solutions to access barriers can wear me down sometimes.
Fun fact; access barriers can be attitudinal too. And other times, the barriers win. I can’t imagine navigating Auckland’s queer nightlife in a wheelchair. Or the stigma you might face having a body that isn’t considered “normal” in a culture that can be pretty toxic and elitist.
Nightclubs can be sensory overload, even for neurotypical people – but where else do we celebrate our queerness?
That’s not a rhetorical question.
Petition for a queer, accessible coffee shop – European style – where we can go to celebrate and be together in a less intense setting! Can somebody please make that happen?
I’m not one to play the victim. The conversations my cane has started in queer spaces have been incredibly insightful at times. But I’m writing this hoping our rainbow community can take note. Please try to create spaces that aren’t exhausting for diverse people in not only sexuality and gender but also mind and body.
I’m not the only one thinking this, either.
My friend. An incredible photojournalist and fellow AIFA hottie Becki Moss was organising a panel- a discussion and queer disabled pot-luck dinner for this year’s Pride festival. The first disability-themed events in pride’s history in Aotearoa, to my knowledge – but unfortunately cancelled due to Covid-19.
Becki shared fantastic ideas with me around some easy steps everybody could take to ensure rainbow celebrations are as accessible and diverse as possible. Imagine. Concerts with an area near the stage for people to park wheelchairs and a place for sitting or laying down for people who would are usually excluded from the celebration? Mobility Parking!
Another member of the queer disabled whānau I am lucky enough to call a friend is Susan Williams – a playwright who uses audio description and has relaxed sessions with beanbags and chill for every show they do. Is Susan the only one doing these things? No – the lovely folk at Arts Access Aotearoa are spreading the word to more and more performers. But a culture of inclusive performance is still far from the norm.
Ensuring consistent wheelchair access and regular rest stops across the pride parade route. Have quieter areas in a nightclub. Generate subtitles for video content. None of these measures is unreasonably difficult. Yet all, if done consistently, would make a meaningful difference to a group who are serially misrepresented, misunderstood and marginalised, even within a community that preaches acceptance and diversity.
As queer disabled people, the onus does fall on us to an extent, too. I’m a big believer in empowerment. When your identity is a source of pride rather than shame – be it a disability, gender, sexuality, whatever – so many doors open. You find your tribe, even if it seems impossible when you’re still coming to terms with who you are. People who matter don’t mind, and people who mind don’t matter – the adage rings true. Perhaps I am a twit who has no idea what the real world is like, but I genuinely believe that.
In high school, I wasn’t blind. But I was *hella* gay. And I didn’t hide it. People used to call me emo, faggot or words to that effect. I would smile and thank them for noticing and affirming my identity. I put no energy into worrying about who I was; how people perceived me had no power over me. And people saw – a few friends confided in me about their sexuality and later came out themselves.
I was lucky. I grew up with accepting parents who had all manner of diverse friends, so I had no stigma around my sexuality. Blindness wasn’t so simple.
Having come to a similar place of pride in my blindness, I’m eager to share that pride with others. That’s why I started Retina Youth’s Customise Your Cane initiative back in 2019. Getting people like 22-year-old Ari to embrace their mobility aid by reframing it as a fashion accessory or art piece rather than a medical device – a la spectacles – is hugely empowering. When using said accessory grants so much more freedom of movement than anxiously trying to navigate without a cane, just hoping people don’t assume you’re on drugs. True story…
There is still a consistent lack of disabled people being genuinely present and embraced in queer spaces. But I want to live in a world full of; stage-side mobility parking and disabled people who are out and proud about every aspect of their identity. And the non-disabled public who have learned through osmosis that disability is a diversity to be celebrated, not excluded, by simply being around disabled people who are present.
Is that too much to ask?
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