Below is an interview with Pia Justesen, author of a new book featuring oral histories of people with disabilities, From the Periphery: Real-Life Stories of Disability, published by Lawrence Hill Books (October 1, 2019).
Tell me a little about yourself!
My name is Pia Justesen. I was born in 1967 and grew up with my parents and three siblings in the countryside; more specifically in a small Danish town called Brenderup. Denmark is a welfare-society with good public schools and a strong public health care system. It is known for its happiness, trust, and hygge so I had a safe and secure childhood. But I was also bored and I found excitement, freedom and role models in books. This is probably why I became engaged in social justice and human rights in my young years. Honestly, this is probably also what made me survive law school!
Danish life may seem picture perfect from the outside but the reality is that ethnic minorities and people with disabilities often experience severe discrimination and exclusion. It might be a surprise to some people, but there is plenty of work to do for a human rights lawyer in Denmark! And this is the kind of work that I have done since I graduated from law school in 1994.
I have always loved traveling and have lived and worked in the diverse cities of Aarhus, Brussels, New York (NY), Madrid, New Haven (CT), Copenhagen, and Chicago (IL). I met my husband in 1992 and we still share all the little big things in life. I love hanging out with my husband and our 3 children who are all in school and university in Copenhagen. We cook, eat, talk, work, study, read, travel, exercise, do chores, argue, explore, and play games – all the typical family stuff. Currently, I split my time between Chicago and Copenhagen.
What led you to write From the Periphery? You write that your friend Jim Charlton suggested this title for your book and what did you like about it?
Having worked as a human rights lawyer for years, I will be the first one to argue that the law represents a crucial foundation of the fight against disability oppression. I have, however, also come to realize that laws cannot stand on their own. Awareness must be promoted and attitudes need to change. So although legislation and court rulings send powerful signals of basic values, they do not necessarily foster changed attitudes and awareness. Something more and something deeper is needed to change social patterns toward genuine equality. It is, therefore, my firm belief that understanding, love, and empathy must complement the law.
So instead of advocating for changes in the law and in the overall societal structures, with this book, I wanted to focus on the individual. What do discrimination and exclusion look like for the person who experiences it? How does it feel? What does it do to the soul? How does the person cope? To better understand disability oppression in society, I wanted to listen to the emotions of oppression. And I wanted others to listen with me.
In short, that was what led me to this project of oral history.
I like the title that Jim Charlton suggested because it visualizes the perspective of the narrators. I hope “From the Periphery” will stir curiosity from possible readers. I hope they will think: “Who are these voices from the periphery that often go unheard? It would be interesting to know, to read, and to learn…”
In the prologue of your book you write that this book is about disability oppression. For people unfamiliar with ableism, sanism, and audism and other forms of disability oppression and discrimination, how would you describe it to someone?
For me disability oppression encompasses two things:
- Discrimination against individual people with disabilities, and
- Exclusion of the group of people with disabilities
You are a human rights lawyer and expert in discrimination. How did you become involved in disability rights and the disability community in Chicago?
After 3 years in law school in Denmark, I took a year off school to work and travel. During that year, I worked as a personal assistant for Torben who was a young man using a wheelchair. At that time, I had already been engaged as a human rights activist in Amnesty International for several years. 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.
Nevertheless, I did not think of the inaccessibility and exclusion as a violation of human rights. At that time, it was not illegal to discriminate because of disability in Denmark. It was not until many years later, when I became involved in the translation and implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) into Danish law, that I understood how disability—just like race, ethnicity, and gender—should be acknowledged as a human rights issue. So when I moved to Chicago in 2014 with my family, I had worked on the Danish implementation of the UNCRPD for several years and it was natural for me to start contacting individuals in the disability community in Chicago. The United States has been on the forefront for many years when it comes to disability rights and disability movements and I was curious to learn from these experiences. I started meeting people, and one person led me to the next person who led me to the next. I ended up teaching disability rights at the University of Illinois at Chicago and working in the civil rights department of Access Living.
There are a number of oral histories by disabled people featured in From the Periphery. How did you go about identifying and interviewing people for your book? What kinds of representation were important for you to include?
I interviewed nearly fifty individuals over two years between 2016 and 2018. Most of the interviews were long, between one or two hours, and sometimes we met more than once. I did not have a rigid questionnaire to go through but I had a list of topics and strived to have casual and fluent conversations with people.
The majority of individuals in the book have disabilities themselves, but I also interviewed parents of children with disabilities. I started interviewing people with disabilities whom I met through my work for Access Living in Chicago and also through my teaching in disability studies at the University of Illinois at Chicago. One person would refer me to the next. Other interview persons, I met through personal contacts. Most of the individuals in this book live in and around Chicago, but what they have experienced could happen in most places.
It was important for me to have a representation of both visible and invisible disabilities in this project. I also wanted as much diversity as possible when it comes to gender, age, class, race, and ethnic origin. However, at the same time, I have enjoyed the freedom of approaching this as a more literary project. In other words, I have not followed the same strict methodology, as I would have if this was a research project. I am not trying to prove anything in this book. I am “just” facilitating and sharing individual narratives.
What was the experience like talking with so many disabled people? What surprised you about the experience of collecting and documenting their stories?
Learning from all the wise individuals that I interviewed was a humbling experience. I was constantly amazed at the details of personal life that people would share with me. In reality, I was taking much and giving little and I will always be grateful for the trust that people have shown me.
In the process, it became very clear to me what I have always argued from a legal and international human rights perspective! It sounds like a cliché but I still want to mention it here because it is important. So… We all have the same basic needs and wants. 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. This is what mattered to everybody I interviewed. Even though I knew this, it just became immensely obvious on an emotional level as well.
I am not sure if you identify as disabled or not. If you do not identify as disabled, did you have any concerns about your lens as the author of the book and editor of these narratives?
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 increasing intolerance, discrimination, and ableism in society made me want to do something and use my knowledge about human rights more actively. I discussed the question with many different people and ended up concluding that I could still contribute to the fight for equality from my outsider position as long as I was transparent about who I am.
I know that stories in this book would be different if they had been told to a person with a disability because of a mutual understanding and recognition, whereas experiences have to be explained in more detail when told to an outsider like me. However, one of my intentions with the book is for other outsiders to understand the physical, structural, and attitudinal barriers that we as the majority knowingly and unknowingly place around persons with disabilities in most communities today. In asking questions and in editing the narratives, my focus has very much been these surroundings. My aim has been for other outsiders to learn about themselves the same way that I have learned.
People who I have interviewed for this book have found it important to visualize and talk about discrimination and exclusion in this way. Their opinion is what eventually made me go forward with the book.
What would you like to share about the intersections of human rights and disability rights? What is commonly misunderstood?
Often disability rights are thought of as something special, as something different from human rights. However, the meaning of human rights is that every person is equally entitled not only to life but to a life in dignity. This includes every person with a disability. In other words, disability rights are human rights!
Disability is a human rights issue because people with disabilities are still denied full and meaningful enjoyment of basic human rights. That is the case all over the world, including in the United States and Denmark. For people with disabilities, a number of human rights are often denied in practice, including the right to work, the right to privacy and family life, the right to protection of health and social security, the right to protection against poverty and social exclusion, the right to adequate housing, and the right to fair trials. These are all basic human rights that every person is entitled to. Whether you have a disability or not! So again, disability rights are human rights.
Why would we then need separate legal instruments codifying disability rights? At the international level, the reality was that people with disabilities did not use the existing human rights instruments. These were not designed to address the specific needs and obstacles that a person with a disability faces. So the reason for adopting the UN Convention on the Rights of Persons with Disabilities (UNCRPD) was a need to stop the invisibility of people with disabilities in the law. There was a need for a special legally binding instrument addressing the situation of individuals with disabilities, clarifying the meaning of rights, concepts, and standards as well as the scope of the legal obligations of states when it comes to people with disabilities. This does not change the foundation that disability rights are human rights!
Based on your long history of teaching, legal representation, and advocacy, what kinds of changes would you like to see in the US and internationally that will make a difference in the lives of disabled people?
I would like to see a fundamental change of attitudes in the majority populations. I would like to see more people generally understanding that disability is about barriers in the surroundings and not about individual diagnoses. That it is the environment and not people with disabilities needing to change!
Legally, I would like to see a stronger implementation of the UNCRPD in most countries of the world. In the U.S. I would like to see the availability of more legal aid to support individuals with disabilities when they claim discrimination or other violations of disability rights, including the Americans with Disabilities Act. In other words, although there is always a need for strengthening legal protections and improving the laws, the most pressing need is implementation and enforcement.
Is there anything else you’d like to add?
Disability is not miserable. But not being regarded, not being respected, being seen as less than, not being treated with dignity—all this is miserable. Barriers in the world can make living with a disability miserable. That is why people with disabilities struggle to survive. That is why people with disability fight to change the world.
I am worried, I must admit. Fear, intolerance, and ugly faces of bigotry worry me. I am worried about everyday ableism, sexism, classism, and racism. I am worried about inequality and discrimination against marginalized groups.
In this book, I have listened to the voices of oppression. They have elicited empathy and identification. The voices have made it possible for me to imagine a kinder world. It is also a possible world.
Pia Justesen, Ph.D., is a Danish human rights lawyer, professor, and writer who moved to the United States in 2014. In Chicago, she has taught disability rights at the University of Illinois and worked with the independent living organization Access Living. She has an extensive list of publications on human rights and discrimination issues. Her work focuses specifically on the human rights of racial minorities and persons with disabilities. She currently splits her time between Chicago and Copenhagen. Find Pia online at www.piajustesen.com or on Facebook @storiesfromtheperiphery.
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