Playing With The Challenges Of Disability

Disability Pride Brighton has been running for a few years and last month it went digital with the Disability Pride 2020 Online Festival. Founded by Jenny Skelton after a post calling out her daughter Charlie’s disability-based discrimination went viral, the annual event was condensed into a two-and-a-half-hour livestream, which aired on July 12.

This year, the Disability Pride committee wanted to put more of a focus on mental health conditions in the festival, particularly during the pandemic. Lauren Alex Hooper’s song about the invisibility of depression particularly stood out to me. She shot a music video in which she paints the words to her song on the walls of a white room. “I tell you everything and you tell me there’s nothing, nothing you can do”, she sings. “You say that there’s no reason why, as if that makes it all alright.” These are brilliant lines, but the most poignant was, “Stuck behind glass in a crowded room, do you see it changing anytime soon?”

Naz, a Disability Pride committee member, shot a PSA-style video about invisible disabilities. It begins with shots of Naz and others, voice-overlays indicating the invisible disabilities that each person has, including a young man with anxiety and another with obsessive-compulsive disorder (OCD). Showing people this invisible reality is sorely needed. “Would you believe me when I said that I’m severely sight-impaired?” Naz asks in the video. “Would you question me if I said that I struggle with mental illnesses? You wouldn’t be the only one that tells me I look fine.” People with chronic illnesses and other invisible illnesses are very likely to be stigmatised and disbelieved even by doctors, because they do not show outward symptoms and cannot “prove” their disability. “Invisible illness stigma needs to go,” Naz says.

“Pride” is a word that has unshakeable roots in queer activism, and I was skeptical about seeing it applied to something other than the LGBTQ+ community. UK Black Pride is LGBTQ+ only, but Disability Pride is not. Ebony Rose Dark, a self-proclaimed “visually impaired drag queen” takes this full circle. She says that in cabaret, she is able to put the topics of disability, sexuality and race together. “I’m interested in playing with ‘being seen,’ looking fantastic, but not being seen. Challenging the seeing eye,” she says in a PinkNews video streamed at Disability Pride. “Most people when they go to cabaret are used to seeing a beautiful person onstage, but if you can’t see that person, that challenges them, because that’s how it is for me as a visually impaired person. I don’t see people, I see shapes. I like to play with my image, it changes all the time, I like to play with that challenge.”

Every musical act was live-interpreted in BSL, except for recordings that had been sent in long before, which the organisers acknowledged as being something they would rectify. But BSL was centre stage as much as possible. Al Start aka Go Kid Music writes songs that are all signed with BSL and Makaton – a communication aid that uses signs and symbols, but not a separate sign language. While the audio from their song ‘Brand New Day’ played, interpretation was the complete focus. Al signed about the state of the Earth’s climate in front of changing backgrounds, from rainforests to icebergs. The centralisation of sign languages in ‘Brand New Day’ and in Pebbles Malone’s version of ‘Fight Song’ is integral to bringing sign languages to the front of the accessibility movement.

Music from bands such as The AutistiX and Paper Dragon was showcased alongside statements from members of Parliament and activists about the significance of Disability Pride in the current socio-political climate. These included Adam Pearson, an activist campaigning to stop facial-deformity-related bullying, and Caroline Lucas. As the MP for Brighton Pavilion, she said the festival is, “more important than ever, because the coronavirus crisis has exposed the inequalities in our society… the government has said that it was committed to supporting disabled people through every stage of this pandemic, but the reality has been somewhat different,” she says. “Disability Rights UK have said that disabled people have been forgotten by the government’s coronavirus strategy, which has failed to keep disabled people in mind…that’s why I’ve been calling for the government to do much, much more.”

This was the first Disability Pride I had ever attended, and while it was a pity that COVID-19 meant it couldn’t be live, the online platform was actually more accessible, since almost everything was captioned, people didn’t have to leave their home to attend, and could watch it wherever and whenever they wanted. I really enjoyed seeing the diversity of the disabled community and the variation of the acts, the performers’ talent was never shown as being lessened by their disability, rather being disabled was integral to the performers’ identity and by extension, their art.

The organisers of Disability Pride acknowledged that the subtitles on the original programme were not complete at the time of streaming due to technical difficulties and time constraints. There will be a future programme including BSL interpreters so that the programme is fully accessible to all. The Final Broadcast Version of Disability Pride 2020 Online Festival can be watched at

Words: Beatrix Livesey-Stephens

Image: Disability Pride Brighton (Lauren Alex Hooper)

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One thought on “Playing With The Challenges Of Disability

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  1. I do feel that “pride” is absolutely allowed to be used by disabled people. There’s a lot of overlap in terms of how they’re treated in society – left to die by governments, passed up for jobs, discriminated both by official policy and socially. Keep in mind that in the US (where I’m from), the Americans with Disabilities Act was passed in *1990*. Shock therapy for autism is still legal. ABA, which has the same roots as modern queer conversion therapy, is also still legal and encouraged. I think these parallels are important and using it as opposed to being expected to “reinventing the wheel” will lead to more immediate progress.

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