Dialogues on Disability: Shelley Tremain Interviews Kristina Lebedeva

“[i]n the absence of an elevator, my mom, a very attractive, petite, and fiercely proud woman, had to carry me up and down five flights of long, steep stairs. She took me to concerts and we went to the Black Sea almost every summer. This kind of vacation was one thing that she did get through her work. As I got older, she bought me books whenever she could, as well as makeup and trendy clothes. Within my small family circle, I wasn’t a less-than. She taught me to hold my head high, even as local kids were hurling insults at me whenever I was outside.

We didn’t have a wheelchair, so we had to use a stroller, which only added to the cruel merriment of those kids. This predicament is something Frantz Fanon wrote about. The black man, he argued, does not experience trauma in childhood. In fact, he isn’t aware of things being harsh and off-kilter as long as he remains within his community. He is first lacerated when he ventures into the world of the white man. The trauma of the black man happens out in the open; it has nothing to do with Freudian repression. Likewise, my trauma took place in broad daylight.

I was a slow learner, but I did learn. The world would deny me the basic company of fellow human beings. More importantly, I understood that the world wanted to beat me down and wanted me to stay down. So, I had to fight back and learn, and learn fast.

But the thing is, my mom was an exception and thus some people, in earnest, called her a saint. The parents of other disabled children rarely brought them outside, let alone travel with them in a country of endless stairs and insurmountable curb cuts, where disabled people were prisoners of architecture. As I learned later, my mom’s colleagues would say to her: “Why do you bother getting her nice clothes and taking her places? Leave her at home. She wouldn’t know any better.” This sentiment was the prevailing thinking.

So, it’s a simple, but hard, truth that it took the unimaginable efforts of one relentlessly fierce individual, fueled by the love that she had for her broken-doll daughter, for me to survive and eventually become the strong-willed, ambitious, proud woman that I am.”

Shelley Tremain, a key figure in the academic field of Disability Studies, is perhaps best known as the author of Foucault and the Government of Disability.

Click here to read the full interview with yours truly.