Disabled is not a bad word.
That’s the message writer Melissa Blake wants to send this Disability Pride Month, as she advocates changing people’s misconceptions about people with disabilities.
“A lot of times we try to dance around, you know, just the word itself. So people will say ‘special needs’, the ‘disabled’,” Blake said. “Nondisabled people try to talk about us or explain our own experiences to us.” .”
And when the trolls come after her— Blake claps back. Blake was born with a genetic bone and muscle disorder called Freeman-Sheldon syndrome. Her symptoms can include abnormally flexed joints, spinal abnormalities and a characteristic facial appearance, and she has had 25 surgeries to correct her joints – including spinal fusion surgery.
And she went viral in 2019 for her response to trolls who told her not to post any more pictures of herself. Telling her own story has opened the curtain on the treatment that people with disabilities often face.
After all, she says, no one knows better what it’s like to be disabled than the disabled themselves.
“Disability is seen as a tragic and horrible thing,” she told CBS News. “Disability Pride Month gives us the opportunity to change that script… and to authentically show up and be ourselves.”
Her story is part of the fight for community, inclusion and acceptance highlighted by Disability Pride Month, which began in 2015 to commemorate the 25th anniversary of the Americans with Disabilities Act.
“Pride of disability for me means survival — sometimes out of spite, sometimes I had no other choice,” Imani Barbarin told CBS News. “But it does mean that we’ve made inroads into the society we live in.”
Barbarin was born with cerebral palsy, the most common childhood motor disability, with 1 in 345 children diagnosed, according to the Centers for Disease Control and Prevention. It’s all about how the brain sends messages to the rest of the body – so it affects each person differently. For her, she uses crutches to get around.
As an advocate for disability and inclusion, Barbarin writes, speaks and creates content about disability. In “Crutches and Spices” on social media, she sheds light on disability rights, inclusion and racial justice.
She remembers a lack of representation growing up.
“I really wanted more representation of people with disabilities who looked like me, who had my experience,” said Barbarin, who is black. “And so I really wanted to write about my experience.”
But she soon found a “welcoming and loving” disabled community that mirrored her experiences back to her, embracing her with open arms – even when society at large sometimes doesn’t.
“The more I started to study, observe and listen to the black community, the more I realized how racism and racism go together and how different communities reflect these stereotypes on black people with disabilities,” she said.
His hashtag #MyDisabledLifeisWorthy went viral earlier this year with thousands of responses after CDC Director Dr. Rochelle Walensky said that among those vaccinated, it is primarily those with comorbidities who are dying from the virus – leaving many with disabilities outraged.
“Ableism is a living, breathing system that we encounter every day,” Barbarin said. “We have a responsibility to fight it, to fight it and to understand ableism is to understand so many other marginalizations as well as how ableism is used against us.”
With the resurgence of COVID withand now Barbarin admits she is still upset with the federal government, adding that it “sends a signal that they don’t take this seriously.”
“People with disabilities make up nearly a third of the population – growing even more with COVID,” she said, referring to health issues like fatigue and an inability to regulate body temperature that can persist after the initial infection known as.” “This idea that it’s ‘simply’ good to have disability inclusion is not the truth. Disability inclusion is literally a lifesaver.”
“We can build a society that includes people with disabilities – in a way that impacts all of us – when we include people with disabilities in the conversation,” said Barbarin.
Photographer Robert Andy Coombs set out to do just that, exploring the intersections of queerness, disability and sexuality with his art – often with vivid self-portraits.
He has always been interested in photographing his body. During his third year in college, he was on a springboard to film a series called Fly/Fall. A week later, Coombs was back at the same. This time, he suffered a spinal cord injury that left him paralyzed in his legs, torso and hands.
As he spent a year at home recovering, he still had his photographic eye – but what could he photograph? But he remembered how worried his parents were.
“They saw all my hopes and dreams kind of withering, which was the complete opposite of my experience,” he says. “I was like, ‘OK, well, little mishap. I need to rebrand.'”
He quickly realized that he was sitting on a gold mine of imagery and was determined to push the limits of what can be achieved with such a transformative disability – with the help of others.
In one series, “Traversing Pride”, photographs are taken duringat eye level — from a wheelchair. He says it was difficult to maneuver and at times it felt like no one saw him – but he definitely saw them.
Coombs spoke about his participation in a recent Pride event in Miami, where organizers set up a handicap tent on a hill. Being a wheelchair user, he says it was “childish”.
“It’s exhausting for people with disabilities to try to get through these Pride events because you’re doomed if you do. And you’re doomed if you don’t,” he told CBS News. “People don’t think we exist because we don’t feel comfortable in these spaces.”
But there is beauty too. In photos from his recent trip to Fire Island, he is peacefully floating in the water. In another, a friend empties his catheter.
“There are themes of care, there are themes of love and affection and touch and desire,” he said. “I think those are pretty universal for any relationship.”
Coombs is featured in trans deaf activist Chella Man’s art exhibition “Pure Joy”, on display at the 1969 New York City Gallery.
The group show, with 12 other artists, “recognises the persistent tokenization of artists with disabilities, countering this cycle by focusing on ideologies of pleasure rather than pain,” according to a gallery statement. “The show serves as a recovery and celebration of our humanity.”
Blake, Barbarin and Coombs don’t want anyone’s pity or ridicule – and they don’t want to be objectified as “inspirational” for living with their shortcomings. To tell your own stories in your own way is to be human with pride and without remorse.