CRP's Blog

From the Periphery consists of nearly 40 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. In our interview with author Pia Justesen, she describes the challenges and lessons learned while writing this oral history collection, which Kirkus Reviews calls “a mind-expanding collection of important stories.”

Be sure to stop by the From the Periphery book launch at Access Living this Wednesday, October 16 at 6 PM. Check out their website for more information on how to get tickets.

What made you want to write a book about disability?

When I was taking a break from law school in Denmark, a young man, Torben, hired me as his personal assistant. Working for Torben gave me a sense of the everyday exclusion that persons with disabilities experience. Many places were inaccessible to a wheelchair user like Torben. He was left out, and I was left out with him.

Today, more than 25 years later, I am an international human rights lawyer and I have worked on issues of human rights, discrimination and disability for years. I am worried, I must admit. Fear, intolerance, and ugly faces of bigotry worry me. So, when I moved to Chicago in 2014, I wanted to learn from the American disability movement and its fight for genuine equality. I wrote this book to give voice to people who have experienced discrimination and exclusion, the consequences for the individual, and the journey to fight for empowerment. These are voices that we rarely hear and I wanted to contribute to the movement to end the “invisibility of disability.”

What was your biggest challenge in terms of writing this book?

My biggest challenge in terms of writing this book was making the decision to write it. I’m a white woman belonging to the privileged majority and I do not have a disability myself. Being concerned about my position, for a long time, I did not think that I would write about disability and edit narratives of disability. On the other hand, my concern about the increasing intolerance, discrimination and ableism in society made me want to do something and use my knowledge about human rights more actively. People who I have interviewed for this book have found it important to visualize and talk about discrimination and exclusion, and their opinion is what eventually made me go forward with the book.

How do you feel your career prepared you to write this book?

It is probably no surprise that I believe in strong legal protection against disability discrimination. I am, after all, a lawyer. I have, however, also come to realize that laws cannot stand on their own. Even though legislation and court rulings send powerful signals of basic values, they do not necessarily foster changed attitudes and awareness. My experiences as a lawyer have made it clear to me that we cannot save the world with facts and laws alone. We need to try out each other’s shoes and take longer walks with one another. We need to feel and we need to understand. Individual narratives are powerful tools to win hearts and minds and that was what led me to this project of oral history. I wanted to promote basic human rights in a different and more literary way than I was used to. But I couldn’t have done it without my experiences as a lawyer, researcher and mediator. It all came together to help me outline the From the Periphery project and to carry out the actual interviews of the oral historians.

What is the biggest takeaway you’d like people to get from reading the book?

My hope is that listening to the voices in the book will build a more contemporary understanding of disability; that disability is not sad or bad. But because of the physical, structural and attitudinal barriers in the surroundings, living with a disability can be quite miserable. Grounded in human rights, I have always argued that we as human beings have the same basic needs and wants. Listening to the voices in this book made this fact immensely obvious on an emotional level as well. I hope that readers will feel the same. That we all are much more alike than we are different! No matter what we look like on the inside or outside, we all want food, health, housing and safety. We all want respect, dignity and freedom. We want relationships. We want independence, and we want to learn and to work.

What are you most looking forward to about your forthcoming book events?

I cannot wait to celebrate the book launch with many of the oral historians who contributed to the book. It has been such a long journey. I am also really looking forward to enjoying it with friends and family, with my former colleagues from Access Living and staff from Chicago Review Press. With the book, I feel like when I was sending my grown kids out to live their own life. It’s nerve-racking but wonderful at the same time. In the coming weeks, I very much look forward to talking to readers and other people who are interested in the book; and I hope that the voices from the periphery will be heard from near and far.

How can people who want to join the fight for disability rights get involved?

There are a number of really great organizations in Chicago, and the surrounding areas, working for disability rights. They are always looking for committed individuals who want to join the fight for disability rights. I have worked with the independent living organization Access Living for several years, and there are many ways to get involved in their fight for equality and inclusive societies. It could be joining a campaign or a community organizing group, becoming a mentor or a mentee, fundraising or making a donation, or getting and giving support in one of Access Living’s peer support groups.

What five people—living, dead, fictional or nonfictional—would you have over for a dinner party and why?

Svetlana Alexievich, who is interested in the history of the soul and is a master of oral history. From her I found the inspiration to write this book.

Hans Christian Andersen, who wrote beautiful fairy tales that I grew up with in Denmark. He looks so unhappy in all existing pictures and statues. It would be wonderful to see him smile and to hear to him tell a story with a happy ending.

Trevor Noah. I think he is brilliantly funny and he seems to be a warm person. I’m sure he could make Hans Christian Andersen laugh. And me.

Doris Lessing, who taught me about social injustices and equality when I was a very young woman. Her writing was a major inspiration to me and was a big part of my choice to become involved in human rights work.

Patti Smith. She could tell us about her interesting book Devotion. Hopefully she would sing a song from my all-time favorite vinyl record, Wave. I still regret giving that away.