Category Archives: books

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

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.

Guest Post by Sasha Feather: Book Review of The Rejected Body

Editor’s note: We are very pleased to host this post from sasha_feather, who has previously written for FWD: AWP: Crutch. FWD welcomes guest posts: please email guestposting [at] disabledfeminists.com for more information.

Sasha_feather is a science fiction/fantasy fan and anti-oppression activist. She is a contributor to Access Fandom

Book Review of The Rejected Body by Susan Wendell
by sasha_feather

The Rejected Body: Feminist Philosophical Reflections on Disability by Susan Wendell
1996
206 pages
Routledge Publishers

If you are at all interested in Disability Studies (DS), I strongly recommend this book. I felt like I had a kind, clear teacher and friend leading me by the hand through basic and advanced concepts in DS, especially relating to feminism and ethics. It is the most accessible and worthwhile academic text I’ve ever read– I don’t have a good track record for reading non-fiction books or textbooks, and I was riveted to this book. Partly this is because The Rejected Body speaks so directly to my own life experience as a person with a chronic illness. Susan Wendell also has a chronic illness, ME/CFS, which is what led her into DS from Women’s Studies.

In the introduction, the author tells you what she’s going to tell you, talks a bit about her own illness experience and finding disability identity, and–making me fall in love with this book–clarifies her language use by, in part, defining scare quotes and why/how she uses them:

“Throughout the text, I use single quotation marks as scare quotes, that is, to draw the readers attention to concepts I question or to uses about which I have reservations. For example, I use scare quote around ‘The Other’ (a concept discussed in Chapter 3) to indicate that, while the concept is a recognized way of thinking about people who are different from oneself, ‘the Other’ is not a way of referring to people which I accept or take for granted” (Wendell 7).

Like many of us I had often heard both the terms “scare quotes” and “the Other” and never really thought about what either of them meant. This book is full of little moments like that– things that I had taken for granted or that had niggled at my brain, and which the book shines a bright light upon.

In the introduction, Wendell also notes the limitations of the book, mainly that it focuses primarily on physical disabilities, that the author does not attempt to speak for all people, and that she struggles with generalizations and use of language. And that’s just the introduction!

A few of my favorite parts that I would like to highlight:

*The pace of life. As someone with fatigue and pain, Wendell is interested in the pace of life as part of the social construction of disability. Those of us who need to think or move more slowly than others are thus disabled by society. She discusses the social construction of disability in chapter 2.

*The mind, the body, and suffering. I have been thinking about embodiment lately, brain-body duality vs. integration, and chapter 7 (“Feminism, Disability, and Transcendence of the Body”) really gave me some grist for this mill. I am going to re-read this chapter shortly, especially the section on pain. Basically, feminists have argued against mind-body duality for very good reasons: because this concept has been used against women’s bodies. We’ve been invested in “Our Bodies, Ourselves”. But for bodies that are suffering and in pain, there are reasons to want to transcend the body, and there is room within feminist frameworks to develop such an understanding: of being embodied, of having bodily autonomy, and yet still wanting to transcend the body and be less tied to the body’s functions, desires, and pains.

*The illusion of control. For PWD, we know that we often do not have control of our bodies, or at best have limited control, and it is sheer luck that determines what happens, a lot of the time. Will I be in less or more pain today? Will I get some new illness? I have basically no control over these things, and I know it. And yet the society I live in is incredibly invested in the illusion of control to the point where it is part of the mythology of my country and my people. As Wendell points out, this puts me at odds with the people around me, even in casual social situations where people talk about small health problems or things to do with their bodies. It’s a disconnect.

*Having no diagnosis Wendell specifically addresses issues of disability for people with no diagnosis. There are a lot of people in this category, and it sometimes can feel like there is no place for us, no identity, especially within the medical model. The disability community, in my experience, creates a place and identity for those of us without a diagnosis.

There were so many other things that I am probably forgetting. I wanted to underline everything. I read it slowly to give myself time to process everything I was reading, but overall it’s a fairly short and accessible book, just densely packed with great information and ideas. Note that because it’s published by an academic press, it is relatively expensive; I recommend searching World Cat to find copies in libraries near you.

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

Percy Jackson and the Olympians: The Lightning Thief — The Special Thing About You

Percy Jackson, a pale young man in a grey t-shirt and jacket holds a lightening bolt in his hands in a New York City Background.Every now and then a movie comes out and I get super excited about it because it sparks something form my childhood or youth that I love.

Percy Jackson and the Olympians did that. I loved Greek mythology in High School (even if I went a little cross-eyed reading The Odyssey and The Illiad). Hollywood is trying to make mythology cool again, and I was stoked about that.

I so wanted to see this movie…and because I think I live under a rock sometimes, I hadn’t heard it was a book series *scribbles a wish list*.

And then we went to the theater.

***Spoilers Ahead. Turn Back Now!***

Last Chance to Avoid Spoilers! Continue reading Percy Jackson and the Olympians: The Lightning Thief — The Special Thing About You

The Importance of Being Bellatrix Lestrange

Bellatrix Lestrange, as portrayed by Helena Bonham Carter, a pale woman with a mop of dark, thick curly hair lightly tinged with strands of grey, smirking devilishly in a black dress with white embroidery, pointing her wand at her own face.It is odd the way that The Guy and I have these conversations…or maybe it is a sign that we watch our Harry Potter movies too much, but one night while viewing HPatHBP for appoximately the nonillionth time I turned to him during the Unbreakable Vow scene at Spinner’s End, and began the following thought train (all quotes should be presumed to be “air quotes”):

Me: You know, all of Snape and Dumbledore’s plans would have been shot if anyone at all would have listened to Bellatrix.

The Guy: No kidding! She never trusted Snape. Look at how she taunts him!

Me: It’s because everyone dismisses her as just being “insane”, you know.

The Guy: Because she was in Azkaban, you know, and it has “driven her mad”, so she obviously doesn’t know what she is talking about.

Me: Obviously.

See, I am not in anyway advocating for Team Voldemort or something. There is a great discussion on racism that can be had about the antics of the Death Eaters (and the dynamics of having that point made from a primarily White PoV) in another post, but more interestingly to me right now in this particular post is that Bellatrix was completely right in her mistrust of Severus Snape and his position beside Lord Voldemort. Her feelings go much deeper than mere jealousy (but why shouldn’t she be jealous, since she alone stood proudly, unafraid of the consequences of supporting Voldemort when others did not?) to a practical mistrust of someone who seemed to benefit all to much from a convenient and literal get out of jail free card.

We know that Bellatrix was described as having a personality that bordered on displaying psychopathic tendencies* (from a lay perspective), in that she showed little to no conscience. We know that her cold and callousness was often played up if for no other reason than to reinforce that Bellatrix was someone who was a little unbalanced. Her pride in being a “pure blood” was over the top to a “normal” person, and we are to presume that no rational person would behave the way that she would. So, no rational person would honestly believe that anyone would dare betray the Dark Lord. She goads people with baby talk and laughs at inappropriate times which all adds to the image of the mentally unstable woman who just can’t be taken seriously, but is tolerated for whatever reasons (in Bellatrix’ case, it is more than likely her undeniable talent and power. Even Death Eaters can’t look that gift horse in the mouth, mental illness or no!).

I am not a doctor, nor anyone qualified to make medical opinions about the fictional personality of Bellatrix Lestrange, but I do know that often in real life people who have mental illness, to any degree, are in fact taken less seriously than those who do not. They are dismissed in everyday goings on, dismissed when it comes to their own medical care, told they shouldn’t have children, told they are not suitable parents if they do already, and when they leave the room you had best believe that people snicker that “poor crazy Bellatrix is raving again”… The importance of Bellatrix Lestrange is that she represents real people…real women who exist — whether intentional on the part of J.K. Rowling or no — who have valid concerns in the world, and who can not get their voices heard because their mental illness (or any disability) creates a barrier between what they say and what others are willing to hear.

So J.K. was free to write this character, whose madness and temper were often mirrored in her own cousin, Sirius Black (interesting, no?), who could go on and on at will about Severus and how he was not to be trusted, how he was really going to betray the Dark Lord. Severus was able to rest easy through her rantings, knowing full well that no one was going to believe her, that his triple agent status was going to remain unscathed, because, after all, who would ever believe a crazy person, right? Voldemort might have been better served had someone actually listened to her.

But no one did.

Interesting, that.

I mean, I guess it is a good thing, both for Harry himself, and for the sales of books five through seven or so and the corresponding movies, since the story might have stopped cold had any of that happened. Something to consider, I suppose.

Oh, how I do love discussing Harry Potter.

*These descriptions I take mostly from the Harry Potter wiki.

Photo: The Harry Potter wiki

Cross Posted at random babble…

The Sisterhood of the Traveling Pants: A Discussion That Always Happens From Outside

My addiction to YA literature has moved on to another series. I decided to check out Ann Brahsares The Sisterhood of the Traveling Pants. Aside from the fact that I am going to really milk this series for review fodder, I really enjoyed it, for many reasons.

Seldom do I find stories written by women that tell women’s stories that I think get so much right. Here, we have the stories of four young women, Bridget, Carmen, Lena, and Tibby, who have grown up together, and for the first time are going to spend a summer apart. Young women who have grown so much a part of each other and have formed such a tight bond, a sisterhood that forged long before the eponymous pants found their way into Carmen’s closet from the thrift store, must branch out and discover how to be whole women by themselves.

And that is a story that I don’t get to read often in popular young adult fiction.

I fell in love with this book just a little bit… more than a little bit.

Which is why it pains me just a little bit to write what I am going to write.

Three of the four girls goes away from home to stretch her wings in situations that are so poignant that I felt the need to hide my face behind my book and bury my tears in the pages. Of the four of them, Tibby alone remains in Washington, D.C. for the summer, getting a summer job, dreading being home without her friends. During her shift at the department store Tibby begins an at first reluctant relationship with a twelve year old girl named Bailey, who passes out in the middle of the antiperspirant display that Tibby had built. Through a series of events that leads Tibby to Bailey’s bedside both at the hospital and at her home, it is revealed that Bailey has leukemia.

We pretty much know what happens to kids with cancer in books like this.

Bailey serves as a vehicle to help Tibby learn to see past appearances as they make a documentary together, or the “suckumentary” as Tibby likes to call it. First intended to be a slightly mocking film about people Tibby finds somewhat laughable, Bailey conducts interviews that help Tibby see these people for unique and wonderful people, each broken and needy like she herself is. Bailey is, of course, here to teach a Very Special Lesson to Tibby, who will then go on to learn so many wonderful lessons from it that she will pass on to her friends in the form of a message on the Pants.

Because naturally Bailey’s time runs out. Time, that thing that Bailey fears most, calls up on Bailey. And Tibby goes through a long and painful denial that she must call upon the Pants and her friend Carmen to help her overcome.

I must ask: Why do we always read of the story of Cancer Girl from the perspective of the healthy and able bodied outsider? I have read so many stories (My Sister’s Keeper, comes to mind, and although she doesn’t die, I know I have read others where the Kid with Cancer is meant to teach a lesson from outside the perspective), and have yet to find one that tells Bailey’s story. Bailey is brave, and good, and wonderful, and she has much to teach us, but does she not ever depart the world with any wisdom of her own? Is she only here to impart and never receive?

I hate that the Baileys of YA are only ever vehicles and never the main character. I hate that I have to read Bailey’s story from someone else’e eyes. It reminds me that the disabled and chronically ill are to be talked about, but not to. Our stories and lives are teaching tools, but not to be lived or experienced. We are to be silent.

Bailey’s story marred this otherwise exceptional book for me, and yes, I was delighted to also have Bailey be a young woman, another woman’s story, but she was just a window dressing, like Tibby’s guinea pig who also died.

Bailey lives on, though, in the Pants, and in Tibby’s first movie, and in the friendships she forged outside of her sisterhood when she needed to. I just wish that it didn’t take Bailey’s life and story to teach this Very Special Lesson.

Also worth noting, the author uses the word “lame” frequently, although I think it was only for two of the characters, as casual dialogue. It grated on me to no end. I wish it wasn’t so pervasive. This otherwise lovely novel that has strong feminist language and themes was kind of flawed by this.

Thank you, always, to Chally, for recommending this book to me. I am going to be reading the next in the series very soon. It seems that one of the girls deals very seriously with depression, and if this is a continuing theme, perhaps you will hear from me on that one too.

Guest Post: Book Review: Everything Beautiful

Karen Healey is an able-bodied author of young adult literature and a PhD candidate at the University of Melbourne. You can read more of her musings on reading, baking, and social justice at her blog, Attention Rebellious Jezebels.

Everything Beautiful, Simmone Howell. Pan.

I am the maniac behind the wheel of a stolen dune buggy. Dylan Luck is at my side. We are tearing up the desert, searching for proof of God.

Riley Rose’s mother died two years ago, when she was fourteen, and everything went to hell. Now her father and her new stepmother have sent her to a week-long camp at Sprit Ranch, AKA the Palace of Suckdom.

I decided I would pack only frivolous things: eyelash curlers and costume jewellery and little jars of antipasto. If I had to go to Christian camp then I would go as a plague. I would be more like Chloe: outrageous and obnoxious — call me a plus-size glass of sin! It wasn’t until Melbourne was wavering behind us like a bad watercolour that reality hit. As the kilometres ticked I sank into my seat and practiced holding my breath. On a silo just past Horsham someone had painted an escape button. ESC – ten feet high against a concrete sky. I almost asked Dad to stop the car so I could press it.

There, she meets Dylan, who used to be a bullying jackass before the accident that cost the use of his legs. Now he’s just sort of a jackass, and his old Bible Camp friends don’t seem to know how to act around him in the chair.

Craig came forward. “Here you go, dude.” He clamped a hand on Dylan’s shoulder and handed him a shiny bundle. Dylan was slow to unfold it, too slow for Craig, who moved across and shook it out, and held it up for display. It was a vest identical to his. Craig draped it over Dylan’s shoulders and announced: “So this year there’s two Youth Leaders!” … I whistled and threw my lavender sprigs at the stage. A flower landed on Dylan’s chest. He watched it fall to his lap and then he picked it up. I noticed his cross then: thick and silver, hanging on a thin leather string. As he held the sprig of lavender, his face changed and I had a sudden flash that he looked on the outside how I felt on the inside: Lost. Moody. Superior. Charged.

Dylan smelled the flower and stared straight at me. Then he put it in his mouth and ate it.

HIJINKS ENSUE. Hijinks include [minor spoilers!] (skip)
Daring Escapes, Heartfelt Confessions, makeovers, loveable doped-up friends, the theft of a shroud, Mean (Christian) Girls who turn out to be real girls, and one of the sweetest, hottest, most beautiful love scenes I’ve read anywhere

I LOVE this book. I love that the two main characters have bodies deemed unacceptable by Western standards – Dylan because he’s a wheelchair user, Riley because she’s fat – and yet are developed as a romantic and sexy pair. I love that Dylan is not a Ministering Angel Who Inspires Us All, but a complex person who’s a moody jerk a lot of the time, but charming and wickedly entertaining a lot of the rest. Howell manages to pack a good deal of wheelchair etiquette and disability awareness into the narrative, but not preachily; mostly it comes as Dylan sarcastically noting something that Riley’s never had to consider before.

In fact, every person in this book, however quickly drawn, comes across as a portrait, not a caricature. Characterisation is Howell’s great strength. No! It’s dialogue. No! It’s humour. No! It’s pace.

Wait, maybe it’s description:

The sun dipped. The sky became the near-night blue of shadows and stolen moments. Now the ground was firmer. The land had flattened out and Dylan’s tracks were no longer visible. Here and there, I found little reflecting pools, and then at last I saw one great big one. The lake was a giant mirror reflecting a crazy-paving of tree and sky. Up ahead I saw a monster gum tree with wandering roots that looked like they’d waded right into the water and thought, fuck it, let’s stop here. Dylan must have thought the same thing. He was in his chair, facing the water, a little way back from the edge.

Everything Beautiful is. Highly recommended. I don’t know where it’s available outside Australia, but the Book Depository has it here, although I have Thoughts on that particular cover.