Interview: Ableism and Me

 
[Image Description: An photo of Sophia’s face and upper body. She has red hair and is wearing a black sweater] Source: Sophia Kleanathous

Interview by Ellanora Lerner

Read the second part of the interview here!

Earlier this year, in the midst of a global pandemic, disabled and chronically ill campaigner Sophia Kleanthous (she/her) decided to take a big step to counter the “lack of understanding of what disability really means.” 

Across news and social media she saw many people advocating for a societal response to the pandemic which would “leave vulnerable and disabled people at home and let everyone else just live their lives.” This ignorance and apathy towards disabled people is something Sophia has faced since university. When she spoke with school friends about her disability “their responses were to kind of sanction me” and they dismissively told her “not to go out.” 

She says “it was almost like, when you have the label of being disabled, or chronically ill, you shouldn't do anything. And you should just forget about living.”

Sophia’s response to the recent growing ableism was to found Ableism and Me, an ambitious global campaign to raise awareness of everyday ableism and fight for disability policy changes. Sophia, who is 28, is no newcomer to campaigns. Her activism started during her time at university, where she ran a campaign advocating for Syrian refugees, and extends into her current professional life and volunteer involvement. 

While this campaign is in its early stages, Sophia has big plans for Ableism and Me. The organization is already moving fast and growing globally, it currently includes people from the United States, Australia, Nigeria, the United Kingdom and different parts of Europe. 

[Image Description: A colorful graphic that says “Ableism and Me Campaign. Challenging Everyday Ableism. @the_chroniccampaigner”] Source.

A central part of the campaign, which Sophia hopes to kick off within the next few months, will be collecting and sharing the experiences of disabled people. Throughout our talk she repeatedly referenced the Everyday Sexism Project as inspiration for her work. This project was founded by British feminist Laura Bates in 2012 and began “as a website where people could share their experiences of daily, normalized sexism, from street harassment to workplace discrimination to sexual assault and rape.” This provided a platform for women to share their experiences and for others to gain a better understanding of what sexism looks like in people’s daily lives.

      Sophia is putting her own twist on this testimony collecting activism model by “asking people to send us their stories in any format they want. So, as a poem, or as a piece of art, or anything they want, to not only show what ableism is and how often and common it is, but also to show how skilled and talented the disability community is.” She hopes to create a website to host the testimonies that the campaign receives. 

      Currently, Ableism and Me is focused on Instagram, a platform that Sophia only joined in the last six months but where she has quickly grown to love and be inspired by the disabled community. Sophia’s work joins a host of powerful disabled activists on Instagram including Imani Barbarin (@crutches_and_spice) “a powerhouse of activism. [Who] is able to take a very complicated policy issue that affects disabled people, and make it into such a clear simple Tik Tok video or post”, Neha (@_endoaware_), Sophie, (@sophs_endo), Emma B (@emmanuewella) “who's doing some amazing work on how Black and disabled people are treated, and her experience of medical racism“ (and whose educational experience you can find here), and Imogen, (@chronicallyimogen), who “focuses on body image and taking away the stigma around disability and sex.”

      This online community includes a diverse group of disabled activists, including POC, trans, and non-binary disabled people, groups that “a lot of the time...get left out from the disability conversation.” Seeking to address this issue, Ableism and Me recently “did a Black History Month campaign on Black British disabled people from history. And we're continuing that into November and December.” The series features artwork by Junior (@yikesitsjr), a Black disabled activist who is volunteering for the campaign. 

[Image Description: A drawing of professional Deaf dancer Chris Fonseca on a brown background with his name written in white cursive] Source

      The campaign also recently launched advisory committees on ableism and racism and ableism and intersectionality, as well as three others on medical ableism; ableism on the go; and work, education, and ableism. The work, education, and ableism committee filled quickly, but the rest are continuing to accept members until the end of December. Anyone interested should reach out on Instagram or by email

The goal of the committees is to eventually look at potential policy changes within each topic. The committees will also be holding virtual focus groups open to anyone with a disability or chronic illness who wants to share their experiences. Information about upcoming focus groups can be found on Ableism and Me’s Instagram.

An important aspect of the advisory groups is that each “will have a chair and a secretary. So they really will be a proper role. I really want to have that so they can put it on a CV, they can improve their chances of employability. And that's what this is all been about. It's all about creating a community and improving that opportunity for disabled people.”