From the Periphery: Real-Life Stories of Disability

by Pia Justesen, Tom Harkin

From the Periphery consists of more than thirty first-person narratives of everyday people who describe what it's like to be treated differently by society because of their disabilities. The stories are raw and painful, but also surprisingly funny and deeply inspiring. The oral histories describe anger, independence, bigotry, solidarity and love—in the family, at school, and at the workplace. Inspired by the oral historians Studs Terkel and Svetlana Alexievich, From the Periphery will become a classic collection that increases understanding of the lived experiences of people with disabilities. 

Genres: Nonfiction, Disability, Disability Studies, Essays, Audiobook, Sociology

283 pages, Kindle Edition

Published October 1, 2019

Reviews

[Kazen · Rating 3 out of 5]

3.5 stars

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.

[Sarah Michaelson · Rating 5 out of 5]

Reading this book makes you feel like you're sitting in front of a fire place, across from a person who is willing to tell the stories that the rest of us won't tell. "From The Periphery" kept me company during a weekend visit to family where no one disclosed the underlying stories that lead to anger, fear of stigma, invisibility, longing for love. The stories in "From The Periphery" delved into all of these issues fearlessly. The book became my confidant and best friend. I joined people whom I wanted to sit next to because by telling their truth I could better understand mine. There was obviously a lot of trust between the interviewer and the subject, which makes reading this collection such an intimate experience. So, thank you, Pia Justesen for writing a beautiful book that helped me get through a weekend and reminded me of who we could be when we look at our life experiences as the glue that connects us.

[Ida · Rating 5 out of 5]

”From the Periphery” is a must-read! The book offers an insightful view into the lives of persons living with a disability. The stories are intelligent, thoughtful, and powerful. Each chapter is introduced by the author, Pia Justesen, so that the reader is guided gently through the complex landscape of disability, rights, and discrimination. Disability is something that affects almost every one of us, in one way or the other; and that is just one of the reasons why this topic is so important. Everyone should read this book!

[SilviaR · Rating 5 out of 5]

The book I want every family member and friend to read. There's no way anyone can understand the lives of people with disabilities and their loved ones unless it touches you personally. Loved these unapologetic, authentic, non condescending stories about the full spectrum of disability life.

[Lecy Beth · Rating 3 out of 5]

I have mixed thoughts about this collection of stories shared by Pia Justesen. I learned a lot from this book. I liked that this wasn't just about physical disabilities but included other types of disabilities, like mental health conditions and ADD/ADHD, which often get overlooked in the conversation. I liked reading the personal stories, but these interviews were transcribed verbatim and I thought all the interjections (laughing and sniffling) took away from the overall reading experience. I also noticed that everyone who was interviewed seemed to be connected in some way, and that felt strange to me.

[Alexis Stankewitz · Rating 2 out of 5]

I sort-of struggled with this one. I don't read a whole bunch of non-fiction, so that may have played into my struggle. I definitely appreciate that it's a book about people with disabilities in Chicago. (where I live)

[Magen - Inquiring Professional Dog Trainer · Rating 4 out of 5]

3.5 stars, rounded up as I think it's a 4-5 star read for an able-bodied person.

[Amishi05 · Rating 5 out of 5]

Excellent read for anyone looking to further understand what living with mental and/or physical impairment can be like.

[Casey Henderson · Rating 3 out of 5]

Chock-full of short stories from people with disabilities, this book threads themes of identity, dealing with discrimination and experiencing the world “from the periphery.” I noted several fantastic quotes but decided to highlight just one excerpt. This text captured me as it’s a perfect introduction to a major element of modern disability ideology.
⠀⠀
“A vast literature about disability rights underscores this distinction between impairment and disability. Not being able to use your legs, for example, is an impairment, but being unable to get into your local cinema is a disability. So if there are ramps, curb cuts and physical accessibility everywhere, a person using a wheelchair may have an impairment. But that person has equal opportunities and therefore does not have a disability in these contexts. The example illustrates that it is the barriers more than the actual impairment that disable a person, whether these barriers are physical, structural or attitudinal.”
⠀⠀
This ideological take doesn’t encompass the entirety of disability experiences. However, it offers an expanded possibility for people to perceive, and thereby, connect with and support the disability population. Considering what is disabling for a person and not simply what their disability is can be a productive, solutions-oriented mind shift.
⠀⠀
Keeping it short and sweet since ideology packs a punch in thought effort! A narrow and personal bend in this month’s “book review” (all of grad school centered around disability ideologies so I can’t help but share!), but I truly embraced this collection of stories and recommend for anyone seeking to understand more about disability.

[jamie · Rating 3 out of 5]

Okay I just don't get all the different ways of saying all these things that, to me, sounds all the same. Impairment vs. disability, person with a disabilty vs. disabled person vs. handicapped person.

There were a few instances in this that were a bit weird. I wish I wrote them down so I could share them. But there was one essay in here that compared disabilty to being gay. Or disability rights to gay rights or something like that. And there were a couple times when someone would say that being disabled made them feel asexual. Like you can just randomly feel like that, like asexuality is a choice or something.
It was just uncomfortable. There was one awful moment when a man looked down on taking SSI.

There were also things I related to. Having to make do with what's available or accessible, the infantilization or paternalism. Doctors offices that don't have the staff to lift me onto an exam table or just don't want to deal with that. That my age doesn't match the experiences I have lacked. People talk over me instead of to me. When people sah "we'll manage" instead of just going somewhere accessible. That people don't really see me, they just see a wheelchair. When people automatically assume that a physical disability also means it's your mind. I have to plan EVERYTHING and I always come prepared.

The main thing I took away from this was that in every essay the person would say that their family never treated them any differently. And it was kind of the opposite for me. My mom did everything for me. She would arrange things for me in school that no one else had. I never questioned these things and didn't even realize that it was strange until I was an adult.