From the Periphery: Real-life Stories of Disability by Pia Justesen

44313724From the Periphery consists of nearly forty first-person narratives from activists and everyday people who describe what it’s like to be treated differently by society because of their disabilities. Their stories are raw and painful but also surprisingly funny and deeply moving—describing anger, independence, bigotry, solidarity, and love, in the family, at school, and in the workplace.

Review:

I’m a fan of oral histories so when I saw this book of narratives from folks with disabilities I knew I had to pick it up.

The good:

  • First and foremost, I learned a ton from this book. The interviewees are forthcoming about their experience, worries, and triumphs. In the process they taught me the difference between impairment and disability, rafts of stereotypes we need to smash post-haste, and how to be a better ally.
  • We meet people with a wide range of disability – visible and invisible, mental and physical. At the same time, we see how life for people with the same disability can very different depending on other factors.
  • I especially appreciated the interviews with more than one person. A mom might talk about what it was like to raise a small child with cerebral palsy, then we would hear from the child, now a teenager, about what their life is like. It provides a multi-faceted, insightful view on how disability can affect an entire family.
  • The book is intersectional across race, class, and generations. We see how disability is viewed within various communities, such as the African-American and Latinx communities. However, I have trouble remembering a single person who is not cis-gender and straight.
  • Justesen lets people self-identify, which I love. Most people say what their medical condition is right off the top, but not always. This is the way it should be – people are sharing their stories with us, and we have no right to demand certain information from them. Now and then you get to the end of narrative and realize that the exact disability was never stated and you know what? It doesn’t take anything away from their story.

The not-so-good stuff:

  • While there is a wide range of scope in some ways, most everyone interviewed is from the Chicago area and somehow affiliated with a particular advocacy group. This isn’t all bad – advocates are amazing at telling their story – I would have liked a wider range of experiences.
  • I’m not sure about Justesen’s chops as an interviewer. She has some amazing conversations with advocate spokespeople who are used to talking about themselves, but interviews with less media-savvy folks fall a little flat. I feel like there’s more insight there, waiting to be unearthed, but she didn’t get down to it.
  • There is very little by way of explanation, which is good because it’s places the focus on the interviewees, but I wanted more background. For example, many older folks talk about going to Catholic school. Why is that? Was there one Catholic school in Chicago that was accessible? Did the Church have a policy of providing education when public schools couldn’t or wouldn’t?

These detractors are relatively minor, though. I’m grateful that these folks shared their stories and in the process taught me so much – I gained all kinds of understanding feel like I’m on the path to being a better ally.

Thanks to Lawrence Hill Books and Edelweiss for providing a review copy.

One thought on “From the Periphery: Real-life Stories of Disability by Pia Justesen

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