Disabled Culture

Disabled Culture is a place to reflect on how disability is portrayed in our society, what I think it means, and how it makes me feel. 

Thinking about Disability

Posting ideas to Disabled Culture will allow me to visualize the largely invisible world inhabited by disability and to inspect my own changing identity.
Posts sketch out inspiration and ideas for upcoming episodes of the What’s The Matter With Me? podcast.

In December, I had the opportunity to meet BJ Miller at a holiday party. BJ is a triple amputee palliative care doctor. The first time I heard of him was through this New York Times profile about his work as the Director of the Zen Hospice in San Francisco. What struck me right away was his way of framing his disability, which i found very inspiring.

Miller spent years repulsed by the “chopped meat” where his arm ended and crushed with shame when he noticed people wince or look away. But he slowly became more confident and playful. He replaced the sock-like covering many amputees wear over their arm stumps with an actual sock: first a plain sock, then stripes and argyles. Then, one day he forgot to put on any sock and — just like that — “I was done with it. I was no longer ashamed of my arm.”

“One Man’s Queasy To Change The Way We Die, ” Jane Mooallem, New York Times, Jan. 3, 2017

In person, BJ did not disappoint, from the first moment I saw him bounding up the stairs. It was quite a sight, a man with no legs bounding up the stairs. I managed to sit down next to him and have a very interesting conversation. Stay tuned, I’ll go over it in more detail in an upcoming episode

This article by Frank Bruni tells the story of a bright and interesting woman who uses a wheelchair. People who are different struggle to be afforded recognition, acceptance and respect. All before saying, "Hello."

From the New York Times:

Are You Old? Infirm? Then Kindly Disappear

By Frank Bruni

Dec. 16, 2017
LITCHFIELD PARK, Ariz. — Nancy Root remembers when she vanished.

Not the exact date, but the occasion: She went shopping for a mattress. This was a few years ago. Because the mall was so big and her legs were so weak, she used a wheelchair, which was new to her, and had a friend push her.

Their wait for service was unusually long, and later, as she used the wheelchair more and more, she understood why. In the chair she became invisible. In the chair she turned radioactive. People looked over her, around her, through her. They withdrew. It was the craziest thing. She had the same keen mind, the same quick wit. But most new acquaintances didn’t notice, because most no longer bothered to.
(Show Full Article.. )

Working While Disabled

This time on the Disabled Culture blog, we’ll discuss Sweet Bean, a thoughtful film about a disabled person trying to work, very important subject to me as I am a disabled business owner and I spend all my time trying to work in the face of limitations that my multiple sclerosis disability places around me, as well as the perceptions of my partners, co-workers, and customers.

It was part of the 2015 Cannes Film Festival. She is different, but she’s very good at her job. Still, her difference causes people to stay away.

sweet bean

There are some very powerful moments such as when she is hired, or when we learn about her life at home, or when we meet her friends. All in all, the film suffers from some sentimentality but the story and filmmaking are thought-provoking. Check it out on Netflix.