“My sister is autistic”
“No autistic! Autism!”
Awkwardness, uncomfortable glances, stumbling over their own words as they try to not say the wrong thing, or worse, pity - I'd seen and heard it all. The reactions after merely saying that Tara is autistic were so full of fear and discomfort and were something that continued to confuse me growing up in a household where our mum treated autism as simply a diversity - the same way that she was Iranian, the same way that we were all woman etc.
Do I think these were terrible people? Certainly not. But something had clearly gone very wrong in our society, in schools, education and our communities, where mentioning the word 'disability' to people who were otherwise very aware and educated on other marginalised communities and systemic discrimination, sent them into a slight panic. There was an obvious lack of understanding or exposure to everyday disabled people and an unspoken of segregation between the disabled and non-disabled community.
Disability is the group that so often gets left out of the diversity list: women, BIPOC, LGBTQ+, but rarely disability. Media representation is still abysmally low, public spaces are still so often inaccessible and societal inclusion has a long, long way to go.
As a sister and an ally I often wondered what I could personally do to challenge this or bring about even a small amount of change. How could I change the way people think about the disabled community?
So I talked. Talked and talked and talked. I talked about my sister Tara, her character, her art (ironically she is ‘artistic’ as well as autistic) and how her neurodiversity makes her who she is, which is someone who is absolutely wonderful.
I expanded the content that I’d post on Tara’s artist Instagram page to include stories of other disabled people, their achievements, their protests, their passions and their joy. Inspired by the slogan used in the London disability protests of 1992 “Piss on pity”, I wanted to show my friends the disabled community that I knew, a community rich in culture, people and potential - and one certainly not to be underestimated or pitied.
'Piss on pity' as originally seen at the 1992 Telethon protest
Fast forward, we formed ARTXV, an NFT collective for neurodivergent artists around the globe to sell their work digitally and to provide them with the opportunities that they had been denied by the traditional art world.
In the NFT community there's an acronym often used “WAGMI” which stands for "we’re all gonna make it", used to signal hope and encouragement that a project or community will collectively experience success.
But to me, WAGMI only when we amplify the voices and potential of ALL people and end the stigma around disability, one story or piece of art at a time.