My Top 25 Disabilty Pride Books
Steven E. Brown
Co-Founder, Institute on Disability Culture
www.instituteondisabilityculture.org
© All Rights Reserved, Institute on Disability Culture, May 2015
I’ve related the story many times of when, in the early 1980s, I got involved in the disability rights movement and ventured to my local library to find books about that topic. I came up with two, both by Frank Bowe. Handicapping America became one of my first favorite books about disability rights yet it does not show up on the following list. There are several reasons for this, one being I chose another one of Bowe’s books, and a second there is now so much more to choose from. Indeed, whittling this list to 25, in conjunction with the 25th Anniversary celebration of the signing of the Americans with Disabilities Act (see http://www.adalegacy.com) wasn’t easy.
Below are some criteria I used to come up with this list:
*I didn’t include two of my favorite, and most influential precursors: James Baldwin and Audre Lorde, because even though they may have discussed disability, especially Lorde in The Cancer Journals (Aunt Lute Books, 2006), it wasn’t, as far as I know, their focus. Nevertheless, both had a profound influence on my thinking and I recommend looking for their works.
*I didn’t include my own books. But I recommend them:) Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride and Surprised to be Standing: A Spiritual Journey can be most easily found at: http://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=dp_byline_cont_book_1
*In an effort to get down to 25 I only included one work by each author. However, many have numerous publications and are well worth finding.
*I only included works I’ve read. This automatically eliminated some books I understand are excellent, but if I haven’t read them (yet) I didn’t feel I could include them. I have a pile of books to read, so the list might change next time around…
*I attempted to include books about disability by authors with disabilities.
*Diverse genres are included: non-fiction, fiction, plays, poetry, with anthologies, especially for plays and poetry.
*My biases and experiences show up in a leaning towards history and disability culture and in what I realize is a U.S. based, white list. I clearly have gaps of my own to fill.
*The order of the list is alphabetical.
*Finally, lists are personal, made for discussion, and updates. With that in mind here are my, as of today, “Top 25 Disability Pride Books.”
The Books
1. Bartlett, Jennifer, Sheila Black, and Michael Northern. (Eds). (2011). Beauty is a Verb: The New Poetry of Disability. El Paso, TX: Cinco Puntos.
A poetry anthology, this is the best place I know to find a multitude of poets with disabilities—and then to look elsewhere for more of their work.
2. Bascom, Julia. (Ed.) (2010). Loud hands: Autistic people, speaking. Washington, D.C.: The Autistic Self Advocacy Network.
As the title states this is Autistics, speaking for themselves, about themselves, from a historical advocacy perspective, a communication perspective, a human rights perspective, an eye toward the present and future. Many of these essays speak to this Neurotypical.
3. Bowe, Frank. (1986). Changing The Rules. Silver Spring, MD: TJ Publishers.
An autobiographical examination of the early years of one of the United States' most influential policy advocates with a disability, particularly riveting in discussing Bowe's pre-adolescent years coping with deafness.
4. Browne, Susan E., Debra Connors, and Nanci Stern. (1985). (Eds). With the Power of Each Breath. Pittsburgh and San Francisco: Cleis Press.
A powerful anthology depicting women's views about life, disability, anger, activism, belonging, and many other topics.
5. Charlton, James I. (1998). Nothing About Us Without Us: Disability Oppression And Empowerment. Berkeley: California.
This is an exciting book because it’s the first American book to attempt to synthesize the development of the disability rights movement, both domestically and internationally, and to put forward an agenda of what has been progressive and regressive about these developments.
6. Claggett, Jr., Charles E. with Richard H. Weiss. (2014). Max Starkloff and the Fight for Disability Rights. St. Louis: Missouri History Museum.
The first full-length biography I know of about one of the leaders of the independent
living, disability rights movement of the 1970s and beyond. Starkloff and his wife Colleen founded first Paraquad, the St. Louis independent living center, then the Starkloff Disability Institute, focused on increasing employment of individuals with disabilities and Universal Design.
7. Ferguson, Philip M. (1994). Abandoned To Their Fate: Social Policy And Practice Toward Severely Retarded People In America, 1820-1920. Philadelphia: Temple.
An analysis of why institutions for people with what we today call intellectual disabilities assumed premier significance in the American imagination, (even though most individuals with intellectual disabilities didn’t reside in them), resulting from the need for institutional administrators to promote their own welfare, both economically and professionally.
8. Finger, Anne. (1990). Past Due: A Story Of Disability, Pregnancy, And Birth. Seattle: Seal.
A compelling writer recounting her discovery of her pregnancy, how it impacted her perception of herself as a woman with a disability and then discovering anew life as the mother of a child with a disability.
9. Gallagher, Hugh Gregory. (1990). By Trust Betrayed: Patients, Physicians And The License To Kill In The Third Reich. New York: Henry Holt.
The story of the Holocaust commencing with the genocide of people with disabilities is terrifying enough, but what sticks with me is the post-Nazi era (that is, now) of former Nazi physicians, among others, continuing to promote the theoretical foundations that led to that genocide and the pervasive, ongoing practice of "assisted suicide" of people with disabilities around the world.
10. Guter, Bob and John R. Killacky. (Eds) (2004). Queer Crips: Disabled Gay Men and their Stories (Binghamton, NY: Harrington Park, 2004).
This book includes stories from people trying to find their place in the world as…something. In this case, it’s gay (mostly) men (mostly) trying to figure out how to combine their sexuality and disability identities.
11.Haller, Beth. A. (2010). Representing Disability in an Ableist World: Essays on Mass Media. Louisville, KY: Advocado Press.
This consists of 10 essays, most previously published elsewhere, all updated. Haller, a newspaper journalist, who has become a professor of media, and a proficient blogger of media issues related to disability, approaches her subjects from a disability rights and disability studies viewpoint. While Haller clearly empathizes with the disability rights movement and is clear in her writing about her position, she is also able to provide a well-nuanced, balanced approach to each of these issues/essays.
12. Hevey, David. (1992). The Creatures Time Forgot: Photography and Disability Imagery. London: Routledge.
How photographs can be used to both oppress and liberate and the best work describing the telethon mentality at this point in time and its deleterious effects on disabled people
13. Irvin, Cass. (2004). Home Bound: Growing Up with a Disability in America (Philadelphia: Temple, 2004).
I couldn’t put this book down. Every time I tried to stop and do something else, I felt it calling to me. It’s a fascinating description not only of growing up with a disability in America in the 1940s, 50s and 60s, but also of growing up in the South.
14. Johnson, Harriet McBryde (2005). Too Late to Die Young: Nearly True Tales from a Life. New York: Picador.
Johnson, who at the time of this publication, may well have been the best-known activist in the country to the mainstream public because of her articles in The New York Times Magazine. The first of those articles, “Unspeakable Conversations,” about her fascinating interactions with philosopher, and proponent of killing babies with disabilities, Peter Singer (still in the news) is Chapter 9 of 11 in this book. Just as fascinating is the following chapter, “Art Object,” which is a narrative of how the pictures accompanying the preceding chapter came to exist.
15. Kuppers, Petra. (2014). Studying Disability Arts and Culture: An Introduction. New York: Palgrave Macmillan.
Described by Kuppers as a “study guide,” this book is full of snippets (mostly) of diverse artists and scholars talking and writing about disability art and culture; and of numerous exercises designed to facilitate (primarily) classroom students to explore and understand the topic.
16. Lewis, Victoria. Ann. (Ed.). (2006). Beyond Victims and Villains: Contemporary Plays by Disabled Playwrights. New York: Theatre Communications Group.
Activist, actor, playwright, and scholar, Victoria Ann Lewis has assembled 7 plays of varying lengths, dramatic styles, and subjects, though all are held together by the common theme of disability. From a focus on historical perspectives to coming to terms with a newly acquired disability to what it is like to be dependent on personal assistance, each of these plays focuses on some aspect of the disability experience.
17. Linton, Simi. (1998). Claiming Disability: Knowledge And Identity. New York: New York University.
A compelling case for why disability studies must exist in universities and how traditional analyses of disability have done everyone a disservice. A must book for anyone in any kind of disability or diverse studies teaching situation.
18. Longmore, Paul K. (2003). Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple.
This is the book I wish had been available when I started reading about disability history in the United States. Longmore does a wonderful job of weaving personal experience and academic investigation in elegant prose. From his first essay, an introduction to the first edition of Disability Rights Advocates’ Disability Watch, in which Longmore explains why there is a need to observe—and change—disability policy to his culminating essay, why he did burn his book, there is a wealth of U.S. social history, disability history, and plain good history.
19. McKay, George. (2013). Shakin’ All Over: Popular Music and Disability. Ann Arbor: Michigan.
A wide-ranging exploration of popular music and its relation to disability with a focus on artists from Cockney Rebel and Ian Dury to Neil Young and Stevie Wonder, with many others in between, including many I had never heard of and others for whom I previously didn’t understand their disability connection, including Young and Joni Mitchell.
20. Nielsen, K. E. (2012). A disability history of the United States. Boston. Beacon.
The first, and so far, only book on U.S. disability history, Neilsen explores this history from the perspectives of Native Americans, blacks, and others and how all have contributed to the evolution of American disability history.
21. Shaw, Barrett. (Ed.). (1994). The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of the Disability Rag. Louisville, KY: Advocado Press.
Much of the discussion about disability rights and culture in the 1980s occurred in the pages of the Rag. This is a compilation of 47 articles and poems.
22. Stewart, Jean (1989). The Body's Memory. New York: St. Martin's Press.
The first novel that captures the spirit and reality of the disability rights movement as a young woman comes to terms with cancer and its aftermath.
23. Wood, Caitlin. (Ed). (2014). Criptiques. San Bernardino, CA: May Day Publishing.
An anthology of essays, featuring a variety of disability scholars, and as described on the back cover, “for people invested in crip culture, the ones just discovering it, and those completely unfamiliar with the term.”
24. Wood, Patricia. Lottery. (2007). New York: Putnam.
A novel about a young man who is not as intellectually fast as those around him, but who might be a lot more appealing, and whose life changes dramatically when he wins the Washington state lottery.
25. Zola, Irving Kenneth, Missing Pieces: A Chronicle Of Living With A Disability (Philadelphia: Temple, 1982).
This spellbinding account of time spent in Het Dorp, a housing cooperative in the Netherlands, is Zola's coming out as an activist with a disability and a member of the community of people with disabilities.
END
Steven E. Brown
Co-Founder, Institute on Disability Culture
www.instituteondisabilityculture.org
© All Rights Reserved, Institute on Disability Culture, May 2015
I’ve related the story many times of when, in the early 1980s, I got involved in the disability rights movement and ventured to my local library to find books about that topic. I came up with two, both by Frank Bowe. Handicapping America became one of my first favorite books about disability rights yet it does not show up on the following list. There are several reasons for this, one being I chose another one of Bowe’s books, and a second there is now so much more to choose from. Indeed, whittling this list to 25, in conjunction with the 25th Anniversary celebration of the signing of the Americans with Disabilities Act (see http://www.adalegacy.com) wasn’t easy.
Below are some criteria I used to come up with this list:
*I didn’t include two of my favorite, and most influential precursors: James Baldwin and Audre Lorde, because even though they may have discussed disability, especially Lorde in The Cancer Journals (Aunt Lute Books, 2006), it wasn’t, as far as I know, their focus. Nevertheless, both had a profound influence on my thinking and I recommend looking for their works.
*I didn’t include my own books. But I recommend them:) Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride and Surprised to be Standing: A Spiritual Journey can be most easily found at: http://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=dp_byline_cont_book_1
*In an effort to get down to 25 I only included one work by each author. However, many have numerous publications and are well worth finding.
*I only included works I’ve read. This automatically eliminated some books I understand are excellent, but if I haven’t read them (yet) I didn’t feel I could include them. I have a pile of books to read, so the list might change next time around…
*I attempted to include books about disability by authors with disabilities.
*Diverse genres are included: non-fiction, fiction, plays, poetry, with anthologies, especially for plays and poetry.
*My biases and experiences show up in a leaning towards history and disability culture and in what I realize is a U.S. based, white list. I clearly have gaps of my own to fill.
*The order of the list is alphabetical.
*Finally, lists are personal, made for discussion, and updates. With that in mind here are my, as of today, “Top 25 Disability Pride Books.”
The Books
1. Bartlett, Jennifer, Sheila Black, and Michael Northern. (Eds). (2011). Beauty is a Verb: The New Poetry of Disability. El Paso, TX: Cinco Puntos.
A poetry anthology, this is the best place I know to find a multitude of poets with disabilities—and then to look elsewhere for more of their work.
2. Bascom, Julia. (Ed.) (2010). Loud hands: Autistic people, speaking. Washington, D.C.: The Autistic Self Advocacy Network.
As the title states this is Autistics, speaking for themselves, about themselves, from a historical advocacy perspective, a communication perspective, a human rights perspective, an eye toward the present and future. Many of these essays speak to this Neurotypical.
3. Bowe, Frank. (1986). Changing The Rules. Silver Spring, MD: TJ Publishers.
An autobiographical examination of the early years of one of the United States' most influential policy advocates with a disability, particularly riveting in discussing Bowe's pre-adolescent years coping with deafness.
4. Browne, Susan E., Debra Connors, and Nanci Stern. (1985). (Eds). With the Power of Each Breath. Pittsburgh and San Francisco: Cleis Press.
A powerful anthology depicting women's views about life, disability, anger, activism, belonging, and many other topics.
5. Charlton, James I. (1998). Nothing About Us Without Us: Disability Oppression And Empowerment. Berkeley: California.
This is an exciting book because it’s the first American book to attempt to synthesize the development of the disability rights movement, both domestically and internationally, and to put forward an agenda of what has been progressive and regressive about these developments.
6. Claggett, Jr., Charles E. with Richard H. Weiss. (2014). Max Starkloff and the Fight for Disability Rights. St. Louis: Missouri History Museum.
The first full-length biography I know of about one of the leaders of the independent
living, disability rights movement of the 1970s and beyond. Starkloff and his wife Colleen founded first Paraquad, the St. Louis independent living center, then the Starkloff Disability Institute, focused on increasing employment of individuals with disabilities and Universal Design.
7. Ferguson, Philip M. (1994). Abandoned To Their Fate: Social Policy And Practice Toward Severely Retarded People In America, 1820-1920. Philadelphia: Temple.
An analysis of why institutions for people with what we today call intellectual disabilities assumed premier significance in the American imagination, (even though most individuals with intellectual disabilities didn’t reside in them), resulting from the need for institutional administrators to promote their own welfare, both economically and professionally.
8. Finger, Anne. (1990). Past Due: A Story Of Disability, Pregnancy, And Birth. Seattle: Seal.
A compelling writer recounting her discovery of her pregnancy, how it impacted her perception of herself as a woman with a disability and then discovering anew life as the mother of a child with a disability.
9. Gallagher, Hugh Gregory. (1990). By Trust Betrayed: Patients, Physicians And The License To Kill In The Third Reich. New York: Henry Holt.
The story of the Holocaust commencing with the genocide of people with disabilities is terrifying enough, but what sticks with me is the post-Nazi era (that is, now) of former Nazi physicians, among others, continuing to promote the theoretical foundations that led to that genocide and the pervasive, ongoing practice of "assisted suicide" of people with disabilities around the world.
10. Guter, Bob and John R. Killacky. (Eds) (2004). Queer Crips: Disabled Gay Men and their Stories (Binghamton, NY: Harrington Park, 2004).
This book includes stories from people trying to find their place in the world as…something. In this case, it’s gay (mostly) men (mostly) trying to figure out how to combine their sexuality and disability identities.
11.Haller, Beth. A. (2010). Representing Disability in an Ableist World: Essays on Mass Media. Louisville, KY: Advocado Press.
This consists of 10 essays, most previously published elsewhere, all updated. Haller, a newspaper journalist, who has become a professor of media, and a proficient blogger of media issues related to disability, approaches her subjects from a disability rights and disability studies viewpoint. While Haller clearly empathizes with the disability rights movement and is clear in her writing about her position, she is also able to provide a well-nuanced, balanced approach to each of these issues/essays.
12. Hevey, David. (1992). The Creatures Time Forgot: Photography and Disability Imagery. London: Routledge.
How photographs can be used to both oppress and liberate and the best work describing the telethon mentality at this point in time and its deleterious effects on disabled people
13. Irvin, Cass. (2004). Home Bound: Growing Up with a Disability in America (Philadelphia: Temple, 2004).
I couldn’t put this book down. Every time I tried to stop and do something else, I felt it calling to me. It’s a fascinating description not only of growing up with a disability in America in the 1940s, 50s and 60s, but also of growing up in the South.
14. Johnson, Harriet McBryde (2005). Too Late to Die Young: Nearly True Tales from a Life. New York: Picador.
Johnson, who at the time of this publication, may well have been the best-known activist in the country to the mainstream public because of her articles in The New York Times Magazine. The first of those articles, “Unspeakable Conversations,” about her fascinating interactions with philosopher, and proponent of killing babies with disabilities, Peter Singer (still in the news) is Chapter 9 of 11 in this book. Just as fascinating is the following chapter, “Art Object,” which is a narrative of how the pictures accompanying the preceding chapter came to exist.
15. Kuppers, Petra. (2014). Studying Disability Arts and Culture: An Introduction. New York: Palgrave Macmillan.
Described by Kuppers as a “study guide,” this book is full of snippets (mostly) of diverse artists and scholars talking and writing about disability art and culture; and of numerous exercises designed to facilitate (primarily) classroom students to explore and understand the topic.
16. Lewis, Victoria. Ann. (Ed.). (2006). Beyond Victims and Villains: Contemporary Plays by Disabled Playwrights. New York: Theatre Communications Group.
Activist, actor, playwright, and scholar, Victoria Ann Lewis has assembled 7 plays of varying lengths, dramatic styles, and subjects, though all are held together by the common theme of disability. From a focus on historical perspectives to coming to terms with a newly acquired disability to what it is like to be dependent on personal assistance, each of these plays focuses on some aspect of the disability experience.
17. Linton, Simi. (1998). Claiming Disability: Knowledge And Identity. New York: New York University.
A compelling case for why disability studies must exist in universities and how traditional analyses of disability have done everyone a disservice. A must book for anyone in any kind of disability or diverse studies teaching situation.
18. Longmore, Paul K. (2003). Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple.
This is the book I wish had been available when I started reading about disability history in the United States. Longmore does a wonderful job of weaving personal experience and academic investigation in elegant prose. From his first essay, an introduction to the first edition of Disability Rights Advocates’ Disability Watch, in which Longmore explains why there is a need to observe—and change—disability policy to his culminating essay, why he did burn his book, there is a wealth of U.S. social history, disability history, and plain good history.
19. McKay, George. (2013). Shakin’ All Over: Popular Music and Disability. Ann Arbor: Michigan.
A wide-ranging exploration of popular music and its relation to disability with a focus on artists from Cockney Rebel and Ian Dury to Neil Young and Stevie Wonder, with many others in between, including many I had never heard of and others for whom I previously didn’t understand their disability connection, including Young and Joni Mitchell.
20. Nielsen, K. E. (2012). A disability history of the United States. Boston. Beacon.
The first, and so far, only book on U.S. disability history, Neilsen explores this history from the perspectives of Native Americans, blacks, and others and how all have contributed to the evolution of American disability history.
21. Shaw, Barrett. (Ed.). (1994). The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of the Disability Rag. Louisville, KY: Advocado Press.
Much of the discussion about disability rights and culture in the 1980s occurred in the pages of the Rag. This is a compilation of 47 articles and poems.
22. Stewart, Jean (1989). The Body's Memory. New York: St. Martin's Press.
The first novel that captures the spirit and reality of the disability rights movement as a young woman comes to terms with cancer and its aftermath.
23. Wood, Caitlin. (Ed). (2014). Criptiques. San Bernardino, CA: May Day Publishing.
An anthology of essays, featuring a variety of disability scholars, and as described on the back cover, “for people invested in crip culture, the ones just discovering it, and those completely unfamiliar with the term.”
24. Wood, Patricia. Lottery. (2007). New York: Putnam.
A novel about a young man who is not as intellectually fast as those around him, but who might be a lot more appealing, and whose life changes dramatically when he wins the Washington state lottery.
25. Zola, Irving Kenneth, Missing Pieces: A Chronicle Of Living With A Disability (Philadelphia: Temple, 1982).
This spellbinding account of time spent in Het Dorp, a housing cooperative in the Netherlands, is Zola's coming out as an activist with a disability and a member of the community of people with disabilities.
END
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