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Learning Disability Justice: A Personal Story

November 26, 2018

I just finished reading an amazing book entitled, Care Work: Dreaming Disability Justice, by Leah Lakshimi Piepzna-Samarasinha.

The book is written by someone from the disability community, specifically about the kind of work that the disability community does for each other. The analysis that is provided throughout the book is open surpassed by the powerful stories of how people in the disability community to the work of caring for each other.

Care Work is also a statement that counters the dominate ableist narrative about how able-bodied people are the ones who care for those with disabilities. The book is inspiring and at the same time it challenged my own ableist views and even my own experiences as a child, in my family and my organizing work.

I didn’t see myself as someone with a disability

For me, one aspect of how normalized the ableist narrative is, was how I identified myself as a kid growing up in Pennsylvania. I grew up in a hyper-patriarchal family, where my father dictated everything in the family. We had a family business and from a very early age I was required to assist my father with delivering milk to people’s homes. In addition, our family was extremely into sports and my older brother and I were expected to participated in playing football, baseball and basketball. If we didn’t play or didn’t play well, it was a sign of weakness.

It was in this context that at the age of 8, I was diagnosed with having what we were told at the time, “crocked legs.” When I put my legs together, my feet would be about 4 inches apart, and when I ran my knees would hit each other, often becoming raw and sometimes bleeding.

This diagnosis ended up with me going to see a specialist in Elizabethtown, PA. The specialist worked out of a place called, The Cripple Children’s Hospital. This specialist determined that the problem was my feet, so for several years I was forced to wear “corrective shoes,” do exercises every night and eventually I had to wear these corrective shoes that had cables attached to them leading to a belt that I had to wear around my waist. I even had to wear these shoes with cables to bed every night.

For the next four years I was forced to wear these corrective shoes with cables and had to endure constant teasing from my classmates at school and even from my brother and father who saw my condition as a sign of weakness.

At the age of 12 I went to see another specialist who said that wearing these shoes and doing the exercises I had done for four years were all for nothing. The problem was not my feet, but my knees. Within six months it was determined that I was to have surgery, where three large staples were inserted into the insides of each knee and left there for a  year. After surgery, I spent 3 weeks at the Cripple Children’s Hospital and was in a ward with 25 other kids, all of which had conditions that were worse than mine.

All of this was happening during my years of puberty, which exacerbated my insecurity and awkwardness. I couldn’t play sports for the year that the staples were in my knees, which gave me a sense of shame because of the pressure in my family to be physical and play sports.

Having staples in my knees for a year “worked” and End finished off my High School years play ball and working full time for the family, before I eventually left town and came to Michigan.

My Younger Brother was disabled

I had two bothers growing up and my younger brother contracted spinal meningitis as an infant, which resulted in serious brain damage that has affected his entire life.

My parents were told early on that they could not care for a child with my brother’s condition. When my brother was 8 he was placed in an institution in Butler, Pennsylvania, about a 3 hour drive from where we lived at the time. This meant that we would only visit him once a month, since growing up in a working class family limited our ability to afford the cost and the time to see him.

However, after three years, my brother was moved to an institution that was closer to home, only a 60 minute driver. My brother was at this second institution for only one year, because every time we would go visit, my mother would discover that he was wearing other people’s clothing or he was missing a tooth and staff had no idea that this was happening.

My parents made the decision to bring him home and my mother made the commitment to be his primary care giver. However, my mother had no formal training and often projected he worldview onto my brother. My father was so much worse. My father would be embarrassed by my brother if we were ever in public, he rarely did any care giving and he often used verbal violence and at times physical violence against my brother. My father was a bastard.

Growing up with a brother with the kind of disability he had, certainly impacted how I saw myself in the world and it did teach me how the world sees those with disabilities…….as disposable people.

However, it wasn’t until I moved out of my parents house and became an adult that my own experiences have forced me to learn more and to move closer to what disability justice is.

Participating in Care Work

Over the years I have worked as a direct care giver to people with varying disabilities and with several different agencies. I have always valued this work and found it meaningful, although many of the people I have worked with were not committed to having a relationship with the people that they worked for and the agencies I have worked for often valued profits over people. More over, the biggest problem that I have encountered in doing this work is those doing the work often see themselves as the savior of the people they were working with.

This White Savior politics, particularly in West Michigan where I have done this care work, was often run by Christian organizations. These religious organizations would normalize certain behaviors for the population they were “serving”, with things like having people go to jobs, go to church and embrace a culture of pity. There certainly were people who developed relationships with the people they worked with and tended to treat people better, with more humanity. Unfortunately, there was little opportunity to learn about disability justice or to practice it. There was no real intellectual challenge to the ableist practices and no space for exploring or even being exposed to disability justice for those of us who worked in these spaces. However, there were plenty of examples of how those in the disability community practiced care work with each other. This practice, within the disability community, was often seen as cute and not as an opportunity to learn from the community these organizations claimed to be serving.

Trying to Learn Disability Justice

Over the years as I have been involved in organizing work, I have been challenged by and mentored by people who are part of the Disability Justice movement. Those of us who are organizers and who do not see ourselves as part of the disability community, need to organize in such a way that makes what we do accessible to all bodies. We must stop being part of ableist supremacy and be in solidarity with those whom the dominant culture sees as disposable or a burden. We must see that the Disability Justice Movement is essential in the struggle for collective liberation.

I am grateful for those who remind me, inform me, challenge me and make me accountable for the work I do in this community and to make sure that it is always responsive to the desires of those who have been a challenging inspiration.

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