Category Archives: biography

Guest Post by Laura Overstreet: Book Review – Dancing at the River’s Edge: A Patient and her Doctor Negotiate Life with Chronic Illness

biography, bodies, books, guest post, identity, social attitudes

Editor’s note: We are very pleased to host this post from Laura, who is a first-time guest poster at FWD. FWD welcomes guest posts: please email guestposting [at] disabledfeminists.com for more information.

Laura Overstreet has been a wheelchair user for nearly 20 years as a result of transverse myelitis. She holds a Master of Arts in sociology, and her research interests include disability, sexuality, gender, health, and life course. She regularly speaks on disability awareness topics. Laura blogs at www.LeftyByDefault.com with the focus of surviving, thriving, and being real with disability.

Book Review – Dancing at the River’s Edge: A Patient and her Doctor Negotiate Life with Chronic Illness by Alida Brill and Michael D. Lockshin, M.D.

Alida Brill first landed on the “other planet” of chronic illness at age 12. In those years of the early 1960s, when her symptoms were not easily diagnosed and second-wave feminism was barely on the proverbial map, Alida became a feminist. Doctors ignored her and her mother because Brill’s symptoms were inconsistent and sporadic – and because she was a young girl. She has spent her professional career working for the rights of women and girls undoubtedly informed by those experiences in her young life.

Dancing at the River’s Edge is a dual memoir written by Brill, a woman with chronic illness, and Dr. Michael Lockshin, her physician. It is a rare, honest, and intimate account of their journeys. The chapters alternate between Alida and Dr. Lockshin as they tell us their stories of living with and working in chronic illness. Neither of them chose these respective lives – Alida never wanting to be chronically ill and Dr. Lockshin not intending to work in chronic illness – but their lives happened that way nonetheless. We as readers and fellow inhabitants of the “other planet” might admit something similar.

In reading about their journeys, we learn of their doctor/patient relationship which led to this book and we get a rare glimpse of the physician’s world and his delicate balance of treating patients. So often doctor visits are rushed and the relationship is one that primarily consists of the illness and/or disability. Sometimes we just want to get our questions answered and go home. More than any of this, though, we want to be seen and treated as whole people trying to do our best on the “other planet.” We want our doctors to know who we are in addition to our illnesses and/or disabilities. Dr. Lockshin does this with Ms. Brill, and we as readers reap the rewards of their partnership.

Brill voices the fears all too common for those with chronic illnesses and disabilities. Through the lens of the “other planet,”she gives us an honest portrayal of her illness, work, relationships, friendships, childhood and adulthood, the unique transition that occurs as we age, and the denial and subsequent recognition of illness. She brilliantly conveys the literal and figurative pain of a life filled with illness, yet in the end, she and the reader seem to recognize her life as one that, in her words, “really hasn’t been all bad.” Alida finds a way to thrive among the battle. Read this book not just because you can relate, you are chronically ill or disabled, or you are a supporter of the chronically ill and disabled. Read it for those reasons first – but pour yourself into it because it is beautifully written and a genuinely human story.

The paperback edition of Dancing at the River’s Edge is now on sale. It is also available in hardcover and e-book. You can also look for it on WorldCat.

Moderator’s note: Moderation on guest posts is often much slower than “usual” moderation times.

Feminist Icons

anna history rants, anna rants, biography, disability activism, feminism, history, , ,

One of the fastest ways to make women with disabilities seem pathetic and worthless is to erase or ignore their lives. Why should the Feminist movement celebrate women like Helen Keller, when everyone knows that Keller’s entire contribution was she learned how to talk – and that was entirely Anne Sullivan’s work, after all.

This is, of course, completely untrue [1. Well, not the bit about the water, but that it’s the sum total of Keller’s accomplishments], but there was a concentrated effort to ensure that Keller’s accomplishments were ignored. “Radical Marxist” isn’t as nice a story as “deaf-blind woman overcomes”.

If you learned about Helen Keller in school at all, you probably learned the same pablum-esque story I did: Keller was a horrible brat of a child who screamed and kicked and was bad. Then, Anne Sullivan, that angelic woman, came along and, through her virtuous patience, finally got Keller to learn. She stuck Keller’s hand under the well water, and spelled “water” into her hand. And suddenly, Keller learned that “water” meant this stuff pouring over her hand. And then many years later she graduated from Radcliff College, and this is why all the students in my class should try their hardest, because look at how much Helen Keller accomplished, The End. [1. I think I’ve just described the plot of The Miracle Worker – another reason why I’m irritated that the show’s being put on. Ooh, let’s perpetuate the idea that Keller’s life began and ended at that water pump!]

This idea of Keller is so pervasive that even books written about Keller in her lifetime – books that she wrote the introduction for – include the same story. To be vain and quote an essay I wrote last semester:

The only blind person who is given any voice or agency within the work [Ishbel Ross’ Journey Into Light: The Story of the Education of the Blind] is Helen Keller, who wrote the forward for the book, and is presented as “[rising] above her triple handicap to become one of the best-known characters in the modern world.” … [D]espite dedicating a whole chapter to Keller, Ross makes no mention of Keller’s politics or activism, instead describing Keller’s grace, “agelessness”, and book collection.

No mention of her membership in the Wobblies [1. Industrial Workers of the World. They’re still around.]. I guess that didn’t fit the narrative.

I learned about Helen Keller’s actual life story by reading the book Lies my Teacher Told Me. [1. Loewen, James W. Lies my Teacher Told Me: Everything your American History Textbook Got Wrong, New York: Touchstone, 1995.] It’s a book that’s a bit hard for me to evaluate properly because I went to school in Canada and it’s focused on American education and teaching. The section Keller appears in (cleverly titled “handicapped by history”) talks about hero-building and erasing things that add complications in our respected leaders. About Keller, Loewen writes:

Keller’s commitment to socialism stemmed from her experience as a disabled person and from her sympathy for others with handicaps. She began by working to simplify the alphabet for the blind, but soon came to realize that to deal solely with blindness was to treat symptom, not cause. Through research she learned that blindness was not distributed randomly throughout the population but was concentrated in the lower class. Men who were poor might be blinded in industrial accidents or by inadequate medical care; poor women who became prostitutes faced the additional danger of syphilitic blindness. Thus Keller learned how the social class system controls people’s opportunities in life, sometimes determining even whether they can see. Keller’s research was not just book-learning: “I have visited sweatshops, factories, crowded slums. If I could not see it, I could smell it.”

At the time Keller became a socialist, she was one of the most famous women on the planet. She soon became the most notorious. Her conversion to socialism caused a new storm of publicity – this time outraged. Newspapers that had extolled her courage and intelligence now emphasized her handicap. Columnists charged that she had no independent sensory input, and was in thrall to those who fed her information. Typical was the editor of the Brooklyn Eagle, who wrote that Keller’s “mistakes spring out of the manifest limitation of her development.”

Keller recalled having met the editor: “At that time the compliments he paid me were so generous that I blush to remember them. But now that I Have come out for socialism he reminds me and the public that I am blind and deaf and especially liable to error. I must have shrunk in intelligence during the years since I met him” She went on: “On, ridiculous Brooklyn Eagle! Socially blind and deaf, it defends an intolerable system, a system that is the cause of much of the physical blindness and deafness which we are trying to prevent.” [1. LMTTM, 22-23]

Among other things, Keller helped found the American Civil Liberties Union, donated money to the NAACP, supported birth control, was part of the women’s suffrage movement, and spent time in Halifax. [1. What? I like my city! She spoke at the closing ceremonies of the Nova Scotia School of the Deaf and Dumb. I’ve read her letters to the principal. I get kinda wibbly. Helen Keller was here!]

When we talk about Women’s History – and I understand Women’s History month is in March in the US[1. It’s October in Canada.], so that’s not too long from now – we are doing something wrong if we do not include the lives of women with disabilities. Helen Keller isn’t the only woman with disabilities who has been ignored, erased, or sanitized for public consumption – it happens over and over, to queer women, to women of colour, to women who are ‘marked’ as ‘not-mainstream’.

I think we can do better than this. I think we’re brave enough to not only confront that important women of our past participated in and encouraged others to participate in abuse, neglect, genocide of certain groups of women, but also brave enough to celebrate histories outside the mainstream.

Keiko Fukuda: Be Strong, Be Gentle, Be Beautiful

biography, feminism, history

Olde-tyme Hoydenizens may remember that I wrote about Keiko Fukuda back in 2007, in the Friday Hoyden feature. Fukuda is probably the most knowledgeable and accomplished judoka alive, the last living student of Jigoro Kano, the founder of judo.

Geekfeminism has an update on Fukuda Sensei, with a snippet of film from documentary “Be Strong, Be Gentle, Be Beautiful“. Ju-do means, very roughly translated, “gentle way”; judo’s key principle is to use minimal movements to turn the attacker’s strength back against her. The film’s name derives from an attempt to explain the essence of “ju” – “soft, gentle, flexible, adaptable”. Filmmakers Flying Carp are currently fundraising to complete the film.

In this excerpt, Fukuda talks about how she was ‘frozen’ at fifth dan (fifth degree black belt), for no other reason than that she was a woman. She was finally promoted to ninth dan at the age of 8893. She talks, emotionally, about having had to choose between marriage and judo. Fukuda still teaches judo in San Francisco at the age of 96, clearly much loved and much respected, and there is rather delightful film of her dispensing wisdom and rising from her wheelchair to demonstrate an armlock on a much larger student.

Transcript/description to follow now available, courtesy of Quixotess!

Continue reading Keiko Fukuda: Be Strong, Be Gentle, Be Beautiful →

Guest Post: To Whom It May Concern

biography, guest post, social attitudes, ,

Avendya is a college student with a chronic illness.

To Whom It May Concern:

My life is not a fucking tragedy.

No, really. Yes, I’ve fought with GlaxoSmithKline today, and I’m not sure when I’ll get a medication I badly need. Yes, my knee keeps giving out, and I am barely able to keep up the stairs to my room. Yes, I’ve broken so many times in the last week I’ve last count. No, I’m not sure that I’m really well enough to manage my workload. But you know what? I’m sitting in a computer lab with my best friend, listening to trashy German pop music, and Nadia made me brownies.

These are the stories I want to hear about: not just the tragedy of suffering, not just pity and playing on able-bodied people’s fears, but my life – our lives. I want to see a fictional character who has mobility issues who isn’t a tragic figure, but is clever and beautiful and could probably kick your ass without breaking a sweat. I want to see a story where the love interest isn’t a nice (white) girl, but a woman who’s gone through hell, and is stronger for it. I want to hear stories of disabled men and women succeeding – and not “in spite of” their disability.

I choose to define my life on my terms – not just the bad days, the panic attacks, the times when no pain medication I try even cuts into the pain, but the days where I say “screw it” and explore cities on my own, take in the breeze off the Bay, buy more books than I should, and listen to Imogen Heap as loud as my iPod will go. I may have not chosen my illness, but I damn well chose the rest of my life. I don’t much care if it isn’t what you were expecting from a disabled person – this is my life, my future, and I am not your fucking cliche.

I want to see, hear, read about people like me, living their lives on their own terms. We’re not martyrs and we’re not saints – we are people. More than that, we are – we exist, and no matter how many times our needs are disregarded, our stories are erased, we refuse to let you define us.

New Blog: You Make Me Feel Less Alone

activism, biography, media and pop culture, mental health

Samantha Schultz is the author of I Don’t Want to be Crazy, a free verse recounting of her struggles with her anxiety disorder. I haven’t personally read the book, but several of my friends speak highly of it and the Amazon reader reviews seem quite positive. (Although I would skip the School Library Report review, which commends Schultz for having “had the courage and wisdom to seek professional help.”)

After publishing the book, Schultz received a number of letters and emails and found that the most common sentiment was that the book had made people feel less alone in navigating their own mental illnesses. As she says, “I am honored to be your audience of one, but your story—like mine—has the power to help others.” In order to facilitate the sharing of stories and experiences from people who have a mental illness, she’s created a new blog, You Make Me Feel Less Alone,  for people to submit their stories and poems, which she will then post. There’s an option to have your submission posted anonymously as well.

As Schultz says on her blog, and as we clearly believe also, “Your words are powerful. Your words can help people.”

Barbara Moore: Feminist, Lawyer, Writer & Grad Student of the U of Melb. 1953-2009

biography

This is cross-posted with permission from the original guest author. It was first posted as a Friday Hoyden feature at Hoyden About Town on September 4, 2009.]

Barbara Moore with her sister AnneThis obituary has been provided by Marion May Campbell, who supervised Barbara Moore’s thesis, The Art of Being a Tortoise: Life in the Slow Lane. The thesis is being edited for submission for a Master of Arts by Research in Creative Writing at the School of Culture & Communication, University of Melbourne. Many thanks to Marion for sharing Barbara’s life with us. Three excerpts from Barbara’s memoir have been included at the foot of the post, with the permission of her family and supervisor.

Image: Barbara Moore and her sister, Anne. [with permission]

Early Life

Born to an Irish-Australian family in the northern Melbourne suburb of Reservoir, Barbara Moore contracted in early infancy a virulent form of infantile rheumatoid arthritis, which went undiagnosed until she was nine. At this stage she was immobilised for ten weeks in a plaster cast, which effectively stole from her much of her remaining mobility. Despite shocking chronic pain, Barbara completed high school and began studies in law at RMIT in the early 1970s, performing well enough there to gain entry to study Law at the University of Melbourne. She persisted with her application, responding with a fiercely defiant stare to the interviewing professor’s question as to whether she thought she had a right to deprive a fine young man of a place. She loved those student years, especially revelling in the companionship and conviviality she found as a resident at St Mary’s College.

After Graduation

After graduation, having gained solid to good honours grades in many subjects, Barbara worked in the Auditor General’s office and later in the Freedom of Information office. While she could still manage limited walking, she drove a car to her city-based work and began to pay off her own town house, her courage and persistence having brought down barriers like her bank manager’s reluctance to offer a loan to a single disabled woman.

In the early 1990s, as her mobility became further reduced through the chronic rheumatoid arthritis, Barbara decided to retire from the Law to devote herself to writing. She enrolled in a Graduate Diploma in Professional Writing at RMIT, where she received an award for her outstanding work. One of her stories about her friendship with an old German priest was made into a superb short documentary film by a graduate filmmaking student. Barbara completed her graduate diploma amassing lots of distinctions for work produced across the genres.

Book cover - The Case of the Disappearing SealsBarbara began writing educational children’s books. Four of these were published by Pearsons, and translated into many languages. She told me, her eyes sparkling with mirth, that her children’s books sold well in Korea and that she was ‘hot in Siberia’.

During this time her condition had worsened to the degree that she had to give up independent living and move into a select retirement home, in which she had her own apartment and wheelchair access to a beautiful neighbouring park. She also was an inveterate poet, ranging from witty, light and nonsense verse to metaphysical conceits of considerable accomplishment. She loved the haiku form, and held workshops for fellow residents.

Master of Arts

It was from here that she enquired about the possibility of doing a Master of Arts by Research in Creative Writing with us at the University of Melbourne in the then Department of English. Initially Barbara didn’t proceed at first, because she was no longer able to type for herself. When the Disability Services Unit offered accommodations in the form of technical and carer’s support, she was delighted to embark on the Master’s the following year. After two years of study, Barbara was awarded the Fay Marle Scholarship, which helped her enormously and gave her a great boost of encouragement.

I agreed to drive out to Balwyn for Barbara’s supervisory sessions once a month, when Barbara’s health made this possible. I was shocked and moved to meet this diminutive woman whose body was severely affected by chronic rheumatoid arthritis. Visible joints were fiercely red, swollen, and twisted. Despite pain always 8/10 and often at 9/10, she was never was able to take painkillers, due to her severe allergies. Yet, here she was, in her cropped auburn hair, brightly dressed in funky earrings and striped stockings, brimming with intelligence and wit, ready to get the maximum out of our 2-3 hour sessions, which always began with a cappuccino and cake for Barbara.

Her project for her Masters thesis, entitled ‘The Art of Being a Tortoise: Life in the Slow Lane’, is an episodic, acutely vivid, at times heart-breaking, but often hilarious disability memoir. Although Barbara did not think the memoir was as polished as she might have liked, I know that what I read was pretty much ready to go, and I believe that Barbara has written at least another 10,000 words since then. The pace was frustratingly slow for both of us, and held up by Barbara’s frequent hospital stays due to accident and infection; however, I thoroughly enjoyed working with her, because of the sheer courage, tenacity and wickedly irreverent sense of humour she always exhibited. It would be hard to find a more fiercely funny feminist socialist than this incredibly spirited woman.

Fighting to Finish the Thesis

A week before Barbara passed away, when she mouthed to me that she was in fact dying, I promised her that I would do this in consultation with her sister Anne Duggan, herself a graduate of Melbourne. Barbara nodded her consent and thanks. It also meant a lot to her niece, Frances Overton, an undergraduate in the School of Education, who has worked devotedly at Barbara’s side every weekend, typing to Barbara’s dictation.

It was only in May that Barbara went into rapid deterioration necessitating what we thought would be respite care for a while, to try to deal with her nausea, reactive depression and acute discomfort. Tragically, it became apparent that something more radical was wrong; the wheelchair was not even an occasional option any more and she lost weight rapidly, alarming for one already so fragile.

Immobilised and isolated over these weeks, Barbara’s great hope was to receive the contract for her book of poetry from Pan Macmillan, that her publisher, Jenny Zimmer, had promised back in March. I assured Barbara that I would telephone Jenny to see what was happening. It was quickly apparent that while Jenny was serious about wanting to publish the work, the global economic downturn had put question marks over the budget. Jenny suggested that a possible subsidy from the University of Melbourne might help. I promised to enquire, knowing that in theory this was only available for staff. Nevertheless Allison Dutke was wonderful making enquiries and paving the way for a possible extenuating-circumstances application. However, I received no reply to phone calls and emails from Pan Macmillan over these weeks and was reluctant to return to the Arcadia nursing home in Essendon with such a bleak tidings. I eventually steeled myself to do so, feeling that I had let Barbara down dreadfully.

It was immediately evident on my last visit that Barbara, who could no longer eat or speak, had little time remaining. I left her bedside vowing to her that I’d do my best to see her poetry published, her Master’s submitted and if possible published as well. On receipt of my urgent email Jenny Zimmer was fantastic and flew into action, despite the budget problems, expediting a contract. Barbara received the news with a smile of great relief and was able to hear congratulations from all the nursing staff. The book, illustrated by Barbara’s Concierge artist friend, Roma McLaughlin, will be launched here in Melbourne before Christmas.

I have just been re-reading some of Barbara’s thesis and her voice is utterly alive across these pages. I am grateful to have had the friendship and inspiration from this extraordinarily courageous, funny and highly creative woman. I am also deeply grateful for the way everyone at the University of Melbourne, from Jessica Rose of the School of C&C, Mathilde Lochert the Manager of C&C, to Matthew Brett of the DSU, and Allison Dutka, who all showed extraordinary patience and sensitivity to Barbara’s predicaments and her ‘life in the slow lane’. I dearly hope that her published work will be an enduring testimony not just to this woman’s brilliance, but also to the immense support that her efforts attracted at the University of Melbourne.

Excerpts from Barbara Moore’s memoir, The Art of Being a Tortoise: Life in the Slow Lane

[Click through to read the excerpts.]
Continue reading Barbara Moore: Feminist, Lawyer, Writer & Grad Student of the U of Melb. 1953-2009 →