YEAR OF THE TIGER by ALICE WONG BOOK REVIEW GOODREADS

 

     Teems with her creativity and is crammed with people in the disability justice movement. This is the life of an Asian-American woman in a wheelchair, interdependent on others to keep alive and working. She will never run out of fantastic things to do for her disabled life so that all disabled people can just imagine what they can do. She is pure fire, but she isn’t super-human, and is just as vulnerable as the next disabled person and has learned how to really take care of herself and  loves her friends and family deeply and is ferociously protective.

     She knows and writes how it is to be enmeshed in systems, medical, state, etc. She belongs to a “mycelia network”. Her “nefarious purposes” just may be discovered if you stick around long enough. Alice calls this book an “impressionistic narrative”. In 2024 she is fifty years old.

     Reading this could teach you a whole range of feelings might be internalized ableism. Read about her being beamed to the White House to be commended by President Obama. Learn how much she was inspired by Star Trek and says her genes were mutated and she’s a disabled oracle.

     Every disabled person can relate to how like her; we have to explain and defend our rights, spending precious hours on people who don’t realize their non disabled privilege. But it’s not all impairment related, she goes into gender presentation and sexuality and the message that our being the way we are isn’t acceptable. This book’s about originality, beauty and flexibility in who we are.

     Alice is disability activism and culture multiplied. She started when she moved to college in San Francisco, Ca. They remodeled a part of the college’s garage for an accessible room. She moved through activism to radio, interviewing, started other movements like “Crip the Vote” and “Access is Love”. Lately, she is editing books of disabled people’s stories. This book is about growing up in a Korean family in the Midwest and is full of drawings and photos.

     And the end of the day, she says she is ready to go to sleep and “appear in someone’s nightmare”.

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Here I am, six years later from my last blog. During this time, I've been journaling, reading and taking notes, practicing exercises, and listening to authors. A few times I returned to this blog, read the old posts and changed some things, and then…it just petered out. Why? I lost focus on writing. 

 My writing style has changed, in 2016 it was breezy; most of it was done in one draft. (After the fourth on this post I lost count). Is it memory and six-years-older brain power or is it I’m more critical now after these years of reading? Maybe a little of both.

 I keep thinking about writing purpose. This world is full of words. Why do mine make any difference?  A while back, I started reading Nomadland by Jessica Bruder. I’ve been watching videos about living out of a vehicle for a couple years. I would love to try a short weekend camp, but because of my disability it’s hard to visualize. Then a writer friend on Facebook built out the inside of a school bus including a lift to adapt her wheelchair(s) and voila! It can be done. Since then, she's moved on to a smaller van. I've added a link to Corbette O'Toole's blog below called rollingjoy.

 I also found a man who uses a wheelchair and makes how- to videos about building his utility trailer pulled by his truck. Check out Bob at 1 Foot in the Grave at the end of this post.

 So their writing and vlogging made a difference to me and I know I’m not the only one.

 The mobility of the particular form of muscular dystrophy I have is interchangeable with a walker, manual chair and power chair. Since I’m using my walking muscles as long as possible, (getting harder) it does make for complications with transport. But it builds patience and adaptability. I've had to learn to Be Here for each step.

So, once again, I come back to focus on writing. Listening to what I need to write. I decided to keep my reading focus on Women's Studies for this year; reading some second wave classics, Sexual Politics and now The Second Sex.

Reading some authors I wonder if I could ever be that good, and get fired up enough to try. I just want it to have some excellence, some wit, not get bogged down by the internal and external distractions. 

 So, readers and writers, how do you struggle?  I need criticism and accountability. Writers and artists- what or who has helped you the most to stay focused on your art/craft and to just keep on?

https://rollingjoy.blogspot.com/  Corbett O'Toole 

https://www.youtube.com/watch?v=gCLmGV3C3SQ Bob at 1 Foot in the Grave

 

 

 

 

 

 

 

 

WRITING IN DOG DAYS

 I've struggled daily this month to write. Partly to take a summer break. Partly because I'm still learning how to write actively and have an interesting hook. Lastly, because I got distracted with gardening.

I have to write, to analyze and go under the surface of my life. I need to explain myself and document other people in my life who didn't write. The more people who approve probably means it's not very good art. Where did that come from and why? Maybe I'm acting superior? Believe me, this writing should tell you I'm not. In pop culture, people follow mainstream media to find something interesting. Get online and follow the media leads. This is my art. To take what interests and excites me and write about it. I'm learning to write a book about my life. If you are thinking you could make a list of books by women authors who document their process while writing their story, I would love to see it.

We had an intense thunderstorm in July that resulted in the loss of an oak tree that provided much needed shade. The evening it happened, all I could see out my windows was driving rain. Lightning flashed all around us and thunder rolled non- stop. Pine cones and branches hit and skidded across the metal roof. A sharp staccato strike of lightning cracked nearby. I stood at my back porch door and saw the old oak trunk split in half, with sharp foot-long splinters sticking out of the break. The top half took down a power line and lay over the concrete garden table and chain-link fence. The next day, wheeling by in my power chair, I smelled burnt oak and saw chunks laying on the ground that looked like redwood.

The night of the storm, the power went out, so my daughter and I lit candles and talked about Black Lives Matter and cops, college coming up, and her boyfriend. Usually, we spend a lot of our time online. I had just been reading “The Age of American Unreason” by Susan Jacoby... “The more time people spend before the computer screen or any screen, the less time and desire they have for two human activities critical to a fruitful and demanding intellectual life: reading and conversation. The media invade, and in many instances destroy altogether, the silence that promotes reading and the free time required for both solitary thinking and social conversation” (247). It's hard to remember infotainment is distracting us when we're caught up in it. So I'm trying a sabbatical from my Facebook habit. That's a story in itself.

I've been reading “Writing a Woman's Life” by Carolyn Heilbrun, a Columbia University Literature professor. She also wrote 15 mystery novels under the pseudonym Amanda Cross which I've been reading also. (Thank you SC Lends! My local library.) She interests me in her examination of male biographers of women's lives. Back in the day, women wrote with pseudonyms to protect themselves against accusations of being unwomanly, angry, even “shrill”. Hugely talented, they still ended their novels with women safely tucked away either in marriage or in death. Carolyn knew women needed new examples or scripts of an autonomous, working life and she does not disappoint.

Talking about writing autobiographies, Heilbrun wrote, “Nostalgia, particularly for childhood, is likely to be a mask for unrecognized anger.” and “If one is not permitted to express anger or even to recognize it within oneself, one is, by simple extension, refused both power and control” (15).

She was a second wave feminist, happily married and raised three children; at the same time challenging society's conventions with her non-fiction works and novels.

“Women, I believe, search for fellow beings who have faced similar struggles, conveyed them in ways a reader can transform them into her own life, confirmed desires the reader had hardly acknowledged— desires that now seem possible. Women catch courage from the women whose lives and writings they read and women call the bearer of that courage, friend” ( The Last Gift of Time: Life Beyond Sixty)

Taking a Long Drink of Summer

 June, whizzed by like a semi. I wanted to post the beginning of July and it's all been a whirl so far also. So...I've decided to get off the merry-go-round of social media. I'm taking a sabbatical. I'm just going to read real books on …? Maybe once a day watch major news for a short time. I'm going to spend more time writing.

The Pulse nightclub phenomenon was in June.The religious ideology, extremist Sharia, so many factions. It's all tribal. And the thing about homosexuality “killing souls”. Religiosity. The thing about killing out of love, they believe they're doing them a favor and sending them to their God. Some so-called Christian pastors do the same thing, feel the same way. I've noticed my Christian friends (minus two) said nothing on Facebook about the Orlando shootings. Not a word about how horrible , how sad, how unfair. They really don't care to talk about it? Maybe I missed something. Being gay is the new Jew in Germany. They have an “agenda”, they want to seduce children, they want to make it so Christians have to give them a marriage license and bake them a cake for their wedding. What's up with that cake anyway? I'm sure Germans didn't want to give a marriage license to a Jew & a German. I'm sure they didn't bake cakes for their weddings. Really. I live in the Bible Belt, but I don't want to believe in something just because it's emotionally safe, or makes thinking about living and dying comforting. I want to believe in something because intellect and reasoning tells me it's true and I want to build on it. I'm not sure exactly how to do that yet other than documenting my own life. I hope I can learn. I think I am.

Another line of poetry...

The weight of my own bones is my resistance.

This came about while I was doing my stretching exercises for my atrophied muscles. I was thinking about using hand weights, but I realize my muscles feel stretched to the max already, somewhat like a rubber band, but I don't want the snap. I'm maintaining what muscle I do have and trying to keep them awake as long as possible.

I finished reading “The Mandarin's” by Simone DeBeauvoir. I wondered what the name meant as there was no reference in the book, so I looked it up. It's pretty long for a novel, around 500 pages. The story centers on Paris after WWII, and how writers lived and worked. One of the tedious parts is where the main protagonist, Henri, begins acting out of character. I had to persevere through the part where he gives his life to a somewhat evasive floozy. He even goes so far protecting her as to lie for a German collaborator who exposed two Jewish women in hiding and caused them to be interned at a camp for two years. Otherwise, I admired his passion for trying to decide for himself how to do his work, (political writing for his paper) without outside coercion and financing. There were several relationship stories and the characters supported a party called the SRL that was just right of the Communist Party and just left of the Conservative Gaulist's. After the war, vigilante's murdered people who had collaborated with the German's during the occupation. One of the women characters I liked, (loved her thought processes) was a psychiatrist who took one summer in New York City for a conference and met a writer from Chicago (a real part of Simone's life) and they started an affair that lasted three summers, one on the Mississippi River and one traveling South America. She would return to her life in Paris the rest of the year. The third summer their relationship dissolved. Her much older husband Robert lived and breathed socialistic politics through his writing. At one point he said, “You learn something new or something is revealed and you have to rearrange everything you think. …”. And there's plenty more interesting hooks, open relationships, travels to Portugal where there is a religious fascist government, and the resulting poverty, a woman who gave up her self for a man and goes slowly mad, and a trio of writers on an idyll bike ride through the country side one summer that inspires a play.

Books I have collected for reading this summer are:

“A Dangerous Liason” Biography of DeBeauvoir and Sartre, by Carole Seymour-Jones (so I won't romanticize DeBeauvoir too much)

“The Age of American Unreason”, non-fiction by Susan Jacoby (freethinking)

“The Keillor Reader” put together by Garrison Keillor, creator of the Prairie Home Companion (for fun and writing lessons).

I may read them all or just parts and will probably come across something else in the process.

So, for all my Disability friends and writers, Happy Summer and Happy Writing!

May, My Dream Muse Tells Me "Shake Off the Troubles, Lambshanks".

Louise Erdrich is a beautiful, Ojibwe Native-American author of a long list of books. After several years, I looked up to see if she'd written anything new. I found “Shadow Tag”. Loved the writing at the end on cleaning/going through her kids toys, (every parent could relate) when the lead character went slightly cookoo. There was the strain of being at the end of a dissertation and realizing she'd lost interest. Her painter husband longed to do another type of painting other than the one that was supporting them and he was famous for. There was a surprise twist at the end, totally unexpected but once there I remembered the one clue she gave in the beginning. I've since learned her new book is “La Rose”. She writes amazingly about the north, being from Minnesota.

In May there was lots of raking leaves. I wanted to let them cover my yard to soften and enrich the soil which is largely sand but came to find out, there were too many hiding places for snakes. One of my neighbors being bitten by a copperhead after reaching to pick up her little barking dog, we decided to get the piles down to where things are more visible. I can still rake in my P/C and used a plastic pitchfork to pile them into a pull wheelbarrow. I emptied one or two myself, but then wanted help as I couldn't get my chair too near the little cliff we're piling leaves on.

I've been reflecting on my decision to come to SC. Just how did I end up here anyway? Grand mom had died and Grandad was still alive. I was with my third husband and I don't remember talking to him about it before making the decision. Doesn't that say something about our

communication? In those days I didn't think about the future. How could you know what would happen? This was before my diagnosis. We had come back from Oakland, California, I rode my bike to work, passing the small town airport, to “It's a Beautiful Day” restaurant in College Park. I made vegetarian breakfast's and lunches. Had he found a job yet besides stay at home dad? At the beginning of our relationship, there was one clue that we weren't compatible. His grandfather summed me up as reckless. I just wasn't very well educated on life, and not malleable enough. There were many other reasons that we weren't ready for each other, but I get ahead of my story.. this all led to my journey here. To be continued in my book...

There. I said it. I am writing a book. I certainly don't have to worry about not having material. But how to write a book? Reflecting. Going through for a second or more times, joyful living by the seat of my pants, times of despairing about life while learning what a comma splice is. 

Is there any hope for a book about having four husbands and then finding out, as I recently told my dad, “I don't think I'm the marrying kind”. Yes, there were four, don't judge me.

Well, Phenomenology, Sartre, (http://www.english.ufl.edu/mrg/readings/Sartre,%20What%20Is%20Literature.PDF ), and Existential Philosophy history, (“At the Existentialist Cafe” (Freedom, Being, and Apricot Cocktails), correlates with my desire to keep writing. I must remember to read Camus' essay “The Rebel”. It's on my grocery list.

I will say this...while you're young, get the best education about the world that you can. Especially history. On this, everything else sits. And history includes how it's all been going. I'm sorely lacking in this area, but trying at my ripe age to mend it. Lecture over.

I've also been grazing on Baldwin's “Price of the Ticket”. I wish I could afford books, I'd definitely have this on my shelf. It's essays he wrote about his life growing up black in Harlem, NYC, in the '30's and 40's, leaving home to live in Paris and returning for the 60's, diving reluctantly into the South, with it's bigot's and sublime black artist's and reformers.

“The Creative Process” by James Baldwin Taken from “The Price of the Ticket” p.316

“Perhaps the primary distinction of the artist is that he must actively cultivate that state which most men, necessarily, must avoid: the state of being alone.”

“That all men are, when the chips are down, alone, is a banality—a banality because it is very frequently stated, but very rarely, on the evidence, believed.” p. 316

Baldwin taught me if you're exploiting others, you're exploiting yourself. You may not realize it, but there is a natural balance in giving and taking. Who knows what that is? It's a constant battle to know.

To wrap up, thank you for staying with me, May was a good month also because I took my grandson fishing, my dad came to visit from Tennessee after an absence of three years, and I've sold a battered and broken down car that had memories I hadn't imagined would come flooding back.

I haven't given up on writing for money. I could call my first essay for Vanity Fair “Why Donald Trump Wouldn't Be a Good President” or “This Essay is So I Can Buy My Cat Flea Meds”. I imagine they pay a pretty penny.

Writing, Thinking and Healing

A Facebook friend through Living with FSHD, Cara McDonald's post on Julia Kristeva, French philosopher and psychoanalyst was interesting research. Through Kristeva, I got the title for this month's blog.

I had to get a new living/dining room, hall floor this month due to wood under my carpet so old, a hole pushed in near my computer chair. My mom and step-dad decided to go ahead and talk to a neighborhood guy, Micky. He took one look, said we can get all this up and new wood laid in a day. Then there was the decision should it be new carpet, wood or linoleum that looks like wood? We went with the latter due to costs and it has that clean, new feel to it. Now I don't worry about my chair wheel getting sucked into the old wood vortex.

At the same time, I got a new wall unit air conditioner. It was a little crazy because my step-dad was just getting out of the hospital and I had to have my kids (all grown) come help move furniture onto my back porch for the flooring. Names not given to protect the innocent.

What else happened this month? One of my older daughters needed to move some of her furniture into the store on this property.. She was leaving the state in a few days. How do you write about painful situations and family? Get their permission? Some authors don't. After Erica Jong published a book, her mother said “you're writing my obituary”. This is something I'm learning about writing.

Memoir is writing about what's happened to you. And that includes my family. It's what I know although I don't know everything about them. There's no certainty about what any one feels or thinks in a situation. At least it's not static. If I write about what I remember from almost forty years ago, why am I doing it? It's exposing your life. Why does that particular memory need to be “out there” in the world? It's part of our past. Also, it's changed for the better.

I'm still looking for work under these conditions: My car/energy is going to limit me to work in my own town, not the nearest city. I need my P/C. Again my energy can only be stretched to part-time work. I'm getting help at SC Works and SC Voc Rehab.

Reading over my writing practise for the month, I thought; why don't I just publish it all and show how I do it. Part of this blog is to show how I'm learning to write. Suffice it to say there was twenty-eight pages of needing to pee, my butt hurting, and all the twenty-nine million distractions that led to one good line; " I am the cold Grand Canyon and have the capacity for loneliness."

This month, I've finished Sartre's “Nausea”. I noticed his detailed descriptions of every person's face in scenes. That must have been hard work! Not only does he describe facial characteristics, but their mood also. Describes their thoughts reflected in their faces. But did he really know what they were thinking? Every movement around him. So aware.

“The idea of the passage...(of time)...was still an invention of man.”

“I sank down on the bench, stupefied, stunned by this profusion of beings without origin: (the wind), everywhere blossomings, hatching's out, my ears buzzed with existence, my very flesh throbbed and opened, abandoned itself to the universal burgeoning.

“Existence is a fullness which man can never abandon.”

I'm still reading James Baldwin's “The Price of the Ticket”. Looked up the origin of Caucasian, and in my daily living, found myself thinking; did Jimmy Baldwin do his own dishes? (If I may presume to call him Jimmy.) To be able to write and think as he did, without the MFA...

What's interesting to me? Things that strengthen the writing and knowing.

O' Happy French Spring Wings! Journal, Books and Movies

 I appointed a new name for my blog this month because I saw some FSHD people getting close to using it and I've used it forever talking about my scapula's. Way back in 1979 when I was at a clinic on The Farm in Summertown, Tennessee, I asked if anyone had seen shoulder blades “wing out” like mine and what could it be. Several midwives and a doctor examined me and hadn't a clue. Then one of the midwives said “It just looks like you're sprouting wings”. We all laughed and I felt astonished, then relieved just to be able to make light of it. Since then, I've entertained my imagination with the thought that I and other people with scapular winging are in the evolutionary process of growing wings. I never had any pain from the winging and was too poor for specialists. Never had a clue or thought it could be Muscular Dystrophy. No one in my extended family ever exhibited any symptoms. So that's how I got the term and I owe it to that midwife on The Farm. http://www.thefarm.org/

This month I've had my first bout with a UTI. I've been to the doc, have a culture growing somewhere in a petri dish (think that's how they do it), and was prescribed antibiotics. Is it related to the FSHD? It's possible with the weakening trunk and pelvic floor muscles. But my mission to pay closer attention to self-care just got amped up a notch a la cleaner, more nutritious foodstuffs, more water and continuing exercise. Of course, it's imperative I keep my sanity a la writing, my personal therapy and savior.

I've been struggling this month with my writing. There's the whole issue of why I'm doing it. Well, I can honestly say I just have to. I'm not doing it for approval. I'm not doing it for approval. I'm not doing it for approval. There, maybe three times is the charm. Just rubbing up against that grain in my raising, maybe it was because I was a girl in the 50's and 60's. I've been feeling guilty about letting myself become too dependent because of being on disability. My stamina is at the point where I don't know if I can earn the same amount as I make on SSI. I've been telling myself, do what you love- writing. But it's a luxury I can't afford while owing debts for a new A/C and flooring. I was offered this place to live with the stipulation that I pay monthly utilities, which I've done for the past two years. Then I start thinking about how it's a financial burden on the landlords, who are family members. I just feel like I won't be able to get on that ball anymore. Lately, I just get tired so easily, but when I look back over my journal practice I see why. If you ever feel like you're doing too much, just start journaling your days and look back over them, you'll totally understand why you're so stressed, tired and anxious. I think about pioneer women and maybe I'm just lazy? Again, looking back over that journaling I see that's not the case. I'm productive almost every hour of the day. It's just what am I producing? Is it earning money for my living? I really don't know what I'm trying to say here. Maybe it's the American work ethic. Maybe it's ableism. Just reading about young families activities on Facebook these days makes me inwardly exhausted. Maybe it's my age of 58 going on 59? Am I making apologies for being disabled? Excuses? Maybe writing this is a way of giving back, if anyone reads this and says, “Now I know I'm not the only one who feels this way”. Maybe it's a way to earn back my dignity?

Back when I was married with children, before my disability was diagnosed, people would tell me “you're such a strong woman”. They had plenty of clues my marriage partner was challenging to say the least. Now, two years separated, because I'm dependent, I don't measure up. That's just how I feel. I cost money and need to be giving back. That was one reason for choosing to study Human Services. I feel indebted not only to my family but to those workers paying taxes that become SSI and SNAP. So I'll try harder next week to find work I can do. So far, all I've been offered is volunteer work. (Not enough experience.) Maybe my next interview I'll ask the person who's hemming and hawing about my disability or age if they pay taxes. Then I'll say your taxes become the SSI and food stamps for me, why don't you just let me work instead? I went to college three years ago and earned an Associates in Human Services last summer. I have some accomodations I need to save physical strength. I need to experiment with 20 hours a week and I need my P/C. The other accomodation is because I can't afford a P/C transport vehicle, I'd need to use public transportation.

On another note, here are my monthly Art sharings. First, a video I came across this month that exemplifies our adaptability with this disease. Pierre posted it this month on our Living with FSHD Facebook group. He shares his work day with us. Rising in the morning, showering, swiping on deodorant and greeting his young son before work. At work, he shares morning coffee and lunch with a group, shows a meeting with his co-workers, (including a tip on standing from his desk chair) and his transportation method. He comes home from work and roughhouses with his son. He and his pretty wife go to dinner with friends up some pretty steep apartment stairs. You have to watch to see his fun process. And he's French, so he pulls all this off while looking tres chic. Good luck to Pierre and his family, and merci beaucoup!

https://www.youtube.com/watch?v=aoEO0z_JPNY&feature=youtu.be

A Day With Pierre (French with English subtitles)

http://www.wordgathering.com/ Is an online literature journal written by authors with disabilities. It's on my continuing reading list because it's extremely helpful to see how other disabled artists write poetry, essays, fiction and reviews. One example is an author took an MRI imaging diagnosis document and turned it into poetry that expressed her feelings about the process. Very creative and moving.

I love movies, so here's a list I found of movies with characters and actors with disabilities:

http://www.indiewire.com/article/exclusive-heres-the-official-lineup-for-the-2016-reelabilities-film-festival-20160202

I'm really looking forward to seeing “Margarita with a Straw”, but it's been proving hard to find.

I've been continuing practicing writing and running into some family history. What can I share? What can I write for money? Is that even the right way to go about it? Take away the rules. That's not a rule of writing- to write for money. It's a rule of life. You have to have it.

What do I love? My family. Reading. This month I've read the authors:

Nick Flynn, “The Reenactments” – Made into a movie “Being Flynn”, on suicide, homelessness, learning to write

Natalie Goldberg, “Writing Down the Bones” – writing as a meditation practice

James Baldwin, “Going to See the Man” – being black in America in 40's and 50's

Sartre, “Nausea” (still reading) – knew how to write his unique brand of thoughts about society in a french town.

Also I'm reading Erica Jong's “Seducing the Demon” – Think I read “Fear of Flying” back in the day, but all her books are on my list now. Smart and funny.

I never get tired of hearing about how other people live. Do I do that to avoid my own or because I'm bored with my life? Never! I wish I had time to get bored.