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.

©2012 FWD/Forward. All Rights Reserved.

This is, of course, completely untrue ¹, 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. ²

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 ³. 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. ⁴ 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.” ⁵

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. ⁶

When we talk about Women’s History – and I understand Women’s History month is in March in the US⁷, 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.

©2012 FWD/Forward. All Rights Reserved.

One of the organizations at this rather paltry excuse for a festival was the Center for Disability Services; as a burgeoning Women and Gender Studies major who was just coming into the “disabled” identity at the time (a result of having read Susan Wendell’s essay “The Social Construction of Disability” [which you can read on Google Books here] in my Intro to Women’s Studies class), I was rather excited about this. Context is probably necessary here: I was born three months prematurely and had a very mild case of Cerebral Palsy as a result. The CP, which left me with a permanent limp on my left side and a pronounced case of Supercrip syndrome during my childhood and parts of my adolescence, was something that I simultaneously wanted to claim as a disability and maintain as “not that big a deal”–the latter being something I had been taught to do in various capacities, by various social and cultural structures, throughout my life. In short, the Wendell piece had given me a little push toward claiming an identity as a person with a disability.

So, with good intentions and something resembling pride in my heart, I walked to the CDS table, where a woman was standing. The numerous info sheets and pamphlets on the table were perfectly arranged–a sign that this table had not seen too much “business” compared to some of the other tables. I introduced myself, and then took a pamphlet, adding with a smile, “I have CP, so I might be giving you guys a call soon.”

What I received in exchange was a look of skepticism so intense that I quickly lowered my eyes, and then backed away. Had I made a mistake? Was this a sorority table, and not the CDS table? Did she need my medical records, or the many photos my parents took of me in the ICU incubator during the months I spent in the hospital, as proof? Would my hospital ID bracelet–which, at one time, had managed to fit around my wrist, but now barely slid around two of my fingers–have been sufficient?

Many of the reactions to my CP from (seemingly) abled people had, up until that point in time, had generally conformed to one of two types, both of which irritated me equally: “Wow, you are so brave! That is an amazing story!” or “You don’t look disabled/like you have CP. You can’t really be disabled.” This woman’s wordless reaction to my (admittedly overly-friendly) “outing” of myself as disabled had fallen into the latter category.

I can’t say that I was surprised that I had gotten this sort of reaction yet again; what did surprise me, however–and struck me as somewhat ironic–was where it came from.

©2012 FWD/Forward. All Rights Reserved.

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!

[Title card: "a sample clip from BE STRONG, BE GENTLE, BE BEAUTIFUL - a film by Yuriko Gamo Romer - 415 641-4232 - ygr@flyingcarp.net"]

Keiko Fukuda [in voiceover; we see an old, yellow sort of footage of a Japanese town with a close up of a building with a banner on it]:

At the 1934 celebration of the Kodokan, there were banners commemorating Kano’s masters. I learned that my grandfather Hachinosuke Fukuda had been Kano’s first influential teacher. This was the first time I met Master Kano (founder of judo). [We see a picture of Kano.]

[We finally see Fukuda sensei who is speaking, sitting in a modern room.]

He said there was a new women’s division and encouraged me to join, saying it would make me healthy and strong.

[We see two judo practitioners training.Fukuda sensei speaks in voiceover; the camera moves away from the practitioners onto her, who is watching and evaluating them]:

Master Kano wanted us to teach judo around the world. In the beginning there were 5 or 6 of us who learned English and wanted to do this. But in the end, I was the only one who did this.

[We cut to a room where Fukuda sensei and another woman are being interviewed. The camera starts on Fukuda sensei who is not speaking and pans over to the speaking woman eventually.]: To marry and become a housewife, this was the norm.

Fukuda sensei: Yes, right.

Woman: I felt, to push this aside and find your own true road was an extremely wise and brave decision.

[The camera moves back to Fukuda sensei, who struggles for a long time to speak.]: Fukuda sensei: This was my marriage…[crying; the first woman comforts her] This is when my life destiny was set. At this time I chose to live my life of judo over marriage. I just never imagined how long this road would be.

[Back to the old yellow footage: two judo practitioners approach each other formally while others look on. They begin to fight. Caption on the screen says "Keiko Fukuda in 1951, 5th degree black belt.]

Fukuda sensei: The Kodokan was old fashioned and sexist about belt ranks. They just decided women didn’t need any rank over 5th degree. [We cut to her being interviewed]: I was fifth degree for thirty years. This was the Kodokan’s sexism.

[Card: Keiki [sic] Fukuda immigrated to the United States in 1966.]
[Card: She has lived in San Francisco for 43 years.]

[We see Fukuda sensei, in a wheelchair, and another instructor watching two students practice. They complete a move and turn to Fukuda sensei for feedback.]

Fukuda sensei [in English]: You were like this [imitates]. [Looking at other sensei Eiko Saito Shepherd.] I show them…[Japanese]

Shepherd sensei: She says she’s gonna show you.

[People in the room applaud.]

Student: All right. [She and Shepherd sensei remove Fukuda sensei's shoes for her; help her stand.]

[Fukuda sensei demonstrates the move with Shepherd sensei.]

Fukuda sensei [to Shepherd sensei]: Strong arm.

Shepherd sensei: Yeah, I feel the pain–every bit of it!

[Cut to Fukuda sensei explaining]: Every bit of it [indistinguishable] make straight arm.

Shepherd sensei: As soon as she get my arm, when she moves, my arm’s gonna snap.

[Old yellow footage again.]

Caption: Senseis Fukuda and Noritomi demonstrating “kata” forms.

Eiko Saito Shepherd: Fukuda sensei and her sempai (senior) Noritomi sensei, they got freezed at 5th dan. Thirty years. So I felt it. She got 9th dan when she was 88 years old, and this is a very special birthday. I went to talk to the Kodokan president explaining she will be celebrating this 88 years old birthday. And Kotokan’s president, his answer was, [cut to Shepherd sensei being interviewed outside; caption says she's 6th dan] “Well, in the past, no woman got promoted 9th dan. No previous history.” So he said they will not give her 9th dan. No woman will not get promoted 9th dan.

[Cut to a banner at the entrance of a building. Modern day. The banner says "20th Annual Fukuda Judo Kata Championship." Next few lines happen in voiceover as we see Fukuda sensei entering the championship hall, shots of the judges' table which Fukuda sensei is in the center of, etc.]

Young woman in voiceover: This is a special day, it’s our twentieth anniversary.

Brent Smith [in voiceover]: The power this little bitty woman has, in her presence. It’s not in the strength–I mean, her physical strength, she has trouble right now because she’s so very old–she’s gonna be responsible for kata reemerging into the judo world. Because of the following that she has, and the importance that people are seeing, because there’s nobody left teaching kata! This lady knows firsthand what the founder of judo was trying to teach.

[Cut to Brent, who is sensei, 5th dan.] She’s attained a level of understanding that, I believe, surpasses anyone that’s existed, that is existing on this planet.

[Card: In 2006 for the first time ever, the Kodokan awarded the 9th degree to a woman.]
[Card:Keiko Fukuda was 93 years old. She reigns as the highest ranking woman in the world.]

[Class of women judo students all sitting in assembly.]

Woman just off-camera: So I think that when she says you will be here next year too, you will. [Students laugh.]

Fukuda sensei: Therefore…everybody study the meaning of “ju.” Blackbelt…

Shepherd sensei: She says it’s your homework for one year. One year.

[Card: To study the very complex meaning of "ju" (of judo)]
[Card: Roughly translating to: gentle, soft, flexible, adaptable.]
[Card: This is said to be the essence of judo.]

[End card: "a sample clip from BE STRONG, BE GENTLE, BE BEAUTIFUL - a film by Yuriko Gamo Romer - 415 641-4232 - ygr@flyingcarp.net"]

©2012 FWD/Forward. All Rights Reserved.

I come from a family with a long history in the military, on my father’s side. Both of my grandparents were in the Navy during the Second World War, my grandfather later going on to be involved with the Office of Strategic Services in Berlin, and my grandmother working to decode enemy transmissions (she was a very talented mathematician). Several relatives on that side are currently in the military, working in various capacities around the world.

I can’t join the military, or I might well have, but my family associations did lead me to study military issues in college, and the focus of my undergraduate work was American military culture and the history and motivations behind modern warfare. Along the way, I had a lot of opportunities to interact with veterans and active duty military, and I even spent several months working in a Congressional office, handling a lot of issues, but focusing on veterans in particular.

My interactions with veterans among the Congressman’s constituents were humbling and sometimes very saddening. They had chosen this relatively isolated area to settle in for a number of reasons. Many were anti-war, and liked living in a community with other anti-war veterans. Others appreciated the isolation, the quiet, the companionship of friends they had made. Others were returning to their hometown to settle.

But, when they needed services, most of these people had to go to the VA hospital in San Francisco¹, which is four hours away. Some lacked cars (or didn’t have reliable cars) and were forced to rely on the charity of others to get to appointments. Naturally, having to drive so far, many were obliged to drive down the night before appointments, staying in hotels in San Francisco to make early appointment times, and as a result, this added considerably to the already hefty expenses of travel. This lack of convenience led some to put off appointments, while others found that when they wanted appointments, they were denied, which is how they ended up in our office, asking for help.

These men and women, ranging widely in age, looked at the green college student with respect and courtesy and called me ma’am and asked so meekly for assistance that it almost made me want to cry. Some had been fighting for benefits for years before finally coming to us. Some felt bitter and betrayed, others had firm faith in the VA system. All of them needed services which the government had promised and had not delivered. They brought in stacks of documentation. Some of them were just glad to have someone to talk to, someone who listened intently and focused on their needs and tried to resolve bureaucratic tangles on their behalf.

It was my task to advocate for them. Knowing virtually nothing about veterans’ issues at the time, I was plunged into the depths of the VA system, and I noticed something very interesting: As soon as I said I was calling on behalf of a Representative, I got the red carpet treatment, and so did my veterans, by extension. I got people in for services they needed, I helped arrange transportation and temporary housing for them, and I followed up with them all and was constantly told about how smoothly everything went after I picked up a phone on their behalf. And I couldn’t help but think that there was something troubling about a system in which you needed the clout of a Congressperson behind you to get services to which you are entitled.

How many more veterans, I wondered, lived in my community silently, not asking for or receiving assistance that was theirs by right? Especially now, with two wars going on, there seems to be a dearth of visibility for veterans in this community. I know that they are here, I see them very occasionally, and sometimes we are shocked into remembering that they are here, as happened recently when an Iraq veteran shot himself and his partner in a murder-suicide.

The needs of disabled veterans are as diverse as disabled veterans themselves. “What can I do?” is not a question which can be answered quickly, or simply. I can say that in our rural community, one of the greatest things people can offer is assistance with transportation to medical appointments. For disabled veterans who cannot drive, a willing driver makes a huge difference, and for those who can drive, a safe ride can still be extremely valuable (as, for example, when a veteran needs to have a medical procedure after which driving is not recommended). There’s a benefit to being a driver, too; I really enjoy driving veterans and talking with them. I also enjoy sitting in companionable silence, too.

Many communities have local organizations of veterans. We have a Veterans of Foreign Wars chapter, along with several anti-war veterans groups. People who are interested in helping veterans in their communities can talk to these organizations about their needs. Offering to act as a driver or to visit veterans who  have requested it at home or in the hospital can be great. For people who can’t engage at that level, donating goods can also be very helpful. Many American veterans are homeless or living in poverty, and outreach services to them are available through local veterans’ organizations; donations of food, bedding, and other necessities are often appreciated, as are cash donations, for those who can afford it.

Not all disabled veterans need or want assistance. For those who do, an advocate or just a friendly voice may be greatly appreciated.  The only way you’ll find out is if you ask. One resource available is the VA Voluntary Service program, which offers opportunities to participate at a wide range of abilities.

©2012 FWD/Forward. All Rights Reserved.

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.

©2012 FWD/Forward. All Rights Reserved.

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.”

©2012 FWD/Forward. All Rights Reserved.

I have what is, I believe, widely considered a “visible disability”: Cerebral Palsy. Yet it is of so slight a degree that most (able-bodied) people probably don’t notice it. So, this slightness in a way makes my Cerebral Palsy an invisible disability (which it really isn’t—I do not mean to offend those with invisible disabilities). The tension between the visible/invisible aspects of my disability causes me to reside in a sort of twilight world which constantly shifts between my ability to “pass” as “normal” and the very real experience of my disability. Granted, I walk with a limp and my left hand curves to the left because of my tight muscles, so my “passing” is really an illusion.

For instance, when my able-bodied step-father talks to me sometimes, he implies that he subscribes to such stereotypes as “overcoming your disability” – which is damaging because I can only adapt to my environment and circumstances, since my disability will be with me for the rest of my life. I say this last part without self-pity, which, it is said, is the refuge of the weak. Then I suppose I have a right to it; I say that sarcastically. There is a reason why my step-father would be so clueless in his dealings with me: he raised two boys, both of whom are able-bodied (let us be thankful for that! Ugh).

When I talk to my step-father about how my disability impacts my life, occasionally he will say that I’m using my CP as “a crutch.” A “crutch”? That is outrageous; I was upset by his comment, though I didn’t tell him so. He has tried to convince me to feel guilty about “using my Cerebral Palsy as a crutch.” I simply reject the invitation to feel guilty about an impairment that I was born with. I am just not equipped to see with able-bodied eyes, so to speak. I have known nothing else but my disability; I am stating a fact here. What my step-father is implying by saying that my disability is a “crutch” is that I am too dependent on my impairment and that I complain too much about it. Now, I don’t think about my CP every minute of every day and it’s not too big a problem for me much of the time. However, my CP is also real and is a legitimate issue for me. To say that it’s not would be lying to myself and to other people. And I think I have a right to complain every once in a while about certain things related to my disability, whether they are physical or social aspects. For example, sometimes it is very difficult for me to walk after I’ve been sitting for a period of time because my muscles have minds their own and thus stiffen up, as my Cerebral Palsy is of the spastic type. I think I should have the option of complaining about the fact that I can’t walk! I have cited the above personal example to illustrate how ignorant and clueless most able-bodied people truly are when it comes to dealing with people with disabilities, even if they think they mean well by saying the things they do.

I would like to compare the scenario of telling (or implying) a person with a disability that they’re not disabled with an incident from the life of Frantz Fanon, the great Marxist literary critic. To paraphrase, he was giving a lecture in France and a Frenchman, who was impressed, said, “at bottom, you are a white man” (Lodge 137).

Now, Fanon was of Afro-Caribbean descent. The Frenchman was changing, and thus, denying Fanon’s nature with his comment, whether he knew it consciously or not. Fanon’s incident illuminates white people’s ignorance not only of Afro-Caribbean culture and humanity, but it shows how people in general are ignorant of other people’s feelings as well. The Frenchman’s comment was really a back-handed compliment, which is ultimately insulting and hurtful. Once again, the Frenchman’s remark to Fanon is analogous to someone saying to a person who has a disability, “you’re not really disabled because you don’t look like it and because you are very skilled at what you do.” This denies the person with a disability’s basic nature and humanity, while the ignorant person who makes the comment thinks he/she is complimenting them and telling them what they want to hear (not always the case).

I feel like able-bodied people do not take me seriously when I tell them I have a disability – it is at the point where it seems like they don’t believe me. There may be some evidence for this, though, since I use inserts now as opposed to a higher-than-my-shoe brace I wore as a child. Because to prove to the able-bodied that you are disabled you need concrete evidence of it, which has to be seen! Again, I say that sarcastically. I feel like I’m lying to able-bodied people; this is ironic, since of course I have Cerebral Palsy. Here is an example of an able-bodied person not taking my disability seriously: back when I was in college, my roommate and I had an argument and I tried to level with her by telling her something personal about me. I showed her my leg brace which I used to wear when I was younger. She looked at it briefly and said, “Oh, I hurt my knee too,” and she walked away. The point is she completely misunderstood my situation, taking it (relatively) lightly and believing that I had an injury, the implication being it would heal in a matter of weeks. The truth is, on the other hand, I have an impairment which is life-long and which often gives me searing pain (I’m not pretending that, able-bodied people!).

It feels, for me at least, easier to “pass” on a daily basis. How dare women with disabilities offend the delicate sensibilities of able-bodied people by reminding them that not merely do we exist but that we have our own types of power and strength! Yet there are times when I sort of feel guilty “passing”, as though I’m denying a critical part of myself by keeping up this practice. Yet, it is my opinion that there is a barrier of silence separating me from the able-bodied people I attempt to notify of my disability. The barrier is built by them. We know that; it is nothing new. Yet that is why the social model of disability must continue to be written on and discussed, since it impacts our lives in such a major way. We can keep using the social model as a tool to scrutinize and critique the manner in which the able-bodied interact with us.

Source:

Lodge, David and Wood, Nigel. Modern Criticism and Theory: A Reader. Pearson Longman, New York: 2008. 846 pp.

©2012 FWD/Forward. All Rights Reserved.

This 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.

Barbara 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.]

The difference between Tortoise Boys and Tortoise Girls.

Tortoises are very slow. It takes them much longer to do things and find out things. But they make excellent spies!

I’d just had my 12th birthday.

“Mum?”
“Yes?”
“What is the difference between boys and girls?”

Sitting around our huge cedar wood table in our kitchen, I sat looking out the window at fluttering, leaves falling out of the branches, blowing in September winds.

From uncomfortable silence descended all around me. Uncomfortable, shifting in chairs – no eyes met mine.

Oh Oh, I’ve done it again.

For a while, nothing happened. Then Mum gets up and walks to the bookshelf. Is the answer here on the bookshelf? If only I’d known? I’d have looked for it myself, secretly, of course.

But Mum knows everything.

There are lots of books on the shelf all different colours and all different shapes. But for me, with my arms, shoulders, elbows, back, legs, hands and fingers all sore and in the wrong places, I don’t like big, heavy, books. And Mum chose a big heavy book, dark blue. There are a few exactly the same size and shape — a set of encyclopaedias for children. They are fun to look at and have all sorts of things in them. Big surprises in these books.

Anyway Mum chose one and brought in to me. She looked at it for a long time. Then, she opened it at a page in the middle. I couldn’t wait to see the answer to my question.

A large glossy black and white photo of cherubs. I looked at the photo for a long time.

“Ah,” I said.

Again, I looked, hoping to find a clue. Unfortunately, I couldn’t. “Ah,” I said to Mum, faking my new understanding of the difference between boys and girls as she closed the book.

Back to sipping tea.

To prepare us three girls for the journey from girls to women, Mum gave us all a secret book to read, secretly. It was quite an old book with well-thumbed pages about to collapse. I read it, and it was all about sheep.

Again, I desperately searched in the book for answers to my questions, but no luck. And I still didn’t know the difference between boys and girls.

But there is one person who might know — a very special person, Gay my biggest sister. She’s cutting-edge cool and she knows absolutely everything, like Mum, and she won the Van Baur prize for English Literature, whatever that means, whatever that is. And she’s always reading, the latest books at the moment, she’s reading ‘Lady Chatterley’s Lover’ by D.H. Lawrence which was banned, so that’s even better because it’ll have the difference between boys and girls for sure!

So, I planned my secret quest for some time. I wanted to be like Violette Szabo, parachuting into France with her lethal pill issued to all spies of the French Resistance. I would have been a brilliant spy. There is no way in the whole world that you can extract information from me, even various forms of torture!
So, I chose a time when I knew Gabrielle would be out. Gay read for hours and hours in her room, her garden and all over —different parts of the house. No one in the world could beat this record. When she went out one day I snuck in to her room and found a book — Lady Chatterley’s Lover and opened it for the first time ever.

Finally, I had the chance to find the answers and I read and read several pages. All about some gardener and a big garden and lots of red berries and white berries totally nothing — no answer at all. I finished reading it but I still didn’t know the difference between boys and girls.

Gabrielle and Anne had told me all sorts of funny stories about certain nuns at our school, who talked about “these things”.

When I reached Form 4, I had the same teacher. One morning, while we were studying the subject Religion she stood before us, her face contorted with panic and anxiety.

“Girls, I’m afraid I’m going to have to talk to you about some shocking things. Now girls, you mustn’t talk about these things or think or look at these things. To do any of these, is a mortal sin and you will end up in Hell forever.”

Ah! No we thought trying to suppress giggles.

One giggle would have meant instant expulsion from our school and straight in to Hell — a ghastly fate.

Luckily, we were well practised at suppression to survive.

I couldn’t imagine what she meant. Did it mean going to the toilet or thinking about toilets or looking at yourself in the mirror? Endless speculation produced no answers.

Boys! Forget it. Not that any were interested in me or my body.

So, I tried to be very good and not think about anything just to be safe.

And now, I still don’t know the difference between tortoise boys and tortoise girls.

Perhaps one day, I might find the answer to the riddle of life — the difference between tortoise boys and tortoise girls.

The Art of Never Giving Up or

The Medical Exam You Expect to Fail is the One You Pass

Just as tortoises, are about to give up, something happens which changes their lives forever.

Here is a curious logic. Just because you fail five medical exams does not mean you will fail them all.

After a year of surgery in England followed by a year to recover, I decided I wanted to work.

“Work,” said my doctor. “Why?”
“To develop myself and make a contribution,” I said doubtfully.
“Whatever for? Why don’t you just stay on the pension. It’s much easier.”
“It’s not my idea of fun and I want to be a vicious lawyer pacing the corridors of power and harassing people.”

He looked at me as if I were deluded.

In my enthusiasm, I’d forgotten two things. First, there would be an entrance exam. I was afraid I’d fail the IQ test. Anything to do with words would be OK. But having to fill in missing sequential numbers – forget it. Secondly, there would be another medical exam. The thought of these things almost stopped me from going any further. I couldn’t bear to face another rejection. On the other hand, I had developed an almost cavalier attitude to disaster and failure through necessity. I started playing with the odds. I had a ninety-nine out of one hundred percent chance to not get the job. But what of the one percent?

After waiting many months, I sat for the intelligence test. Much to my surprise, I passed. They must have missed signs of my numerical hopelessness. Not long after, I was asked to attend a medical examination in the Victorian Superannuation Board to assess my ability to work. The doctor greeted me and showed me into her office. She was a woman in her sixties and she looked me up and down. Perhaps she had already failed me I thought to myself. I felt like saying let’s not waste your time anymore. Just let me know quickly and I’ll be out the door. She came over to me and asked for my medical history which I gave trying to make it sound like there was hardly anything wrong with me.

“Now, we’re going to do some tests,” she said. Then she took my arm.
“Can you move this?”
“No.”
“Can you move your neck?”
“No.”
“Can you move your legs?”
“No.”
“Can you move anything?”
“No.”
“Can you write?”
“Yes. I can write.”

Surely that’s all you need to get a job in the public service. To be able to write and talk. She finished examining me and went back to her desk, peering at me over her glasses.

“I’m afraid that you have less than ten percent mobility. The rules specify that anyone with less than ten percent mobility is not fit to work in the public service. You are supposed to be examined by another doctor. He’s just down the corridor. Do you really think that you could handle the work?”

“Yes. If I can get through law school, I can get through anything,” I said.

“I’ve got a plan. I can see that although you do not have any movement in your limbs, you are able to compensate in other ways. I really believe that you should be given a chance. The main problem is getting past the other doctor. Just a minute, I’ll see if he’s in.” She went down the corridor and disappeared for a while. Then she came back into the room looking very happy.

“By the way, you are a Catholic aren’t you!”
“Pardon?”
“You are a Catholic aren’t you? I can tell by where you went to school. Our Lady must be looking after you. He’s not there.”
“Who’s not there?”
“The doctor. If he’s not there, I can’t get him to authorise this so I’ll just have to do it myself. Between you and me, you would not pass but I’m sure you will make the most of it and I wish you a long and happy career in the public service.”

She scribbled out the necessary paperwork. I was so surprised I felt like saying do you think you have made a mistake but I didn’t want to wait around long enough to find out the answer.

Every working day of my life I was grateful to this woman who had the generosity of spirit and vision to see much more than others had seen and to actually expect things from me.

And if the other doctor had been there that day, what path would my life have taken?

Through the Window

Hotel Sofitel far above Melbourne, elevator – if you can find it, takes you soaring up higher and higher to Cafe Lá on the 30 billionth floor of Hotel Sofitel leaving your stomach way behind at ground level. [...]

And through these windows, something stands out – one building, which sends shivers down my spine – still.

Top of Collins Street – what we always call the Paris end, evoking Paris. Melbourne bluestone steps; impossible to climb, then and now.
Musty shiny endless, corridors; endless rooms, shaky lifts.

Burrowed within these walls, Melbourne’s top doctors, surgeons, consultants, and specialists, behind leather pedestal desks and spectacles on their noses, through which they peer.

I can’t even sit in a chair, because my joints are in all the wrong places; that just do and scream with pain and I keep getting stuck over and over again.
Each doctor I am taken to see stares at me, without looking at me.

My Mum and dad are told that the doctors do not know what is wrong with me, but I will live no longer than eight years old – whatever it is I’ve got!
They shrug their shoulders, “Take her home – there’s nothing we can do!” One of the doctors places in my tiny, twisted hand a shilling. His eyes are kind.
Through his window then, I see far away in the distance two multicoloured dots, my two big sisters sitting in the lush green grass of Treasury Gardens; something I could never do. They are waiting, always waiting.

And so, I refuse to eat forever. My body weighs three stone when I am six years old and continues to be that weight until I am twelve years old. My ribs stick out.

“You’ll never grow any higher than four foot eight,” says one doctor when I am fifteen “and also, you will never have any secondary sex characteristics” – whatever they were.

Something deep down inside of me says I will prove you wrong forever. Even the secondary whatever those too! Most definitely!

At seventeen, after unexpectedly being admitted to read law at the University of Melbourne, no one was more shocked than I!

I lived in St Mary’s College for four years. Each night, the Loreto nuns gave me a huge porcelain jug of milk which I carried with great difficulty, because of my hands. Later, I shared it with my ever increasing friends for life, friends for the first time in my life.

All this milk must have gone into my legs, because as each year passed I grew a tiny bit.

I loved eating breakfast in their dining room. Cornflakes drenched in milk and sugar; eggs, bacon and tomato; lashings of thick toast which we made ourselves lathered in marmalade and butter; and cutting edge coffee. I thought I was so cool drinking coffee. We all sat there in the morning gazing out the window half awake, exhausted, but deliriously happy for the first time in my life. Had I landed in heaven?

For lunch, we had ham salads or casseroles and for dinner, dressed in our black academic gowns which made us look very learned, we thought, we were served soup, “flat meat” which were roast dinners cut thinly, minute steak.

Undoubtedly, the highlight of the week was trifle for dessert. Filled with alcohol this sensational conglomeration of ingredients was enough to send us deliriously drunk racing down the corridor, for me metaphorical racing, pretending to be superman.

At home, we had a wall where my father wrote measurements for each child. Gay had reached five foot six; Anne had reached five foot five and I had only reached four foot eight.

So at twenty-one years old on my birthday, I asked if I could be measured. My height was now five foot five.

Milk and love and kindness and laughter made me do the impossible – yet again.

Through this window now, of the magnificent Sofitel, I am celebrating special moments in life, surrounded by friends. How far have I climbed?

[tortoise image is courtesy of Joachim S. Müller on flickr and a Creative Commons licence.]

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