disability

“The ABCs of Autism Acceptance” by Sparrow Rose Jones

September 19, 2021 by Sonia Connolly 1 Comment

Recommended to me by: AlexSeanchai

I thought the ABCs of autism acceptance would be the basic or elementary level of acceptance. Instead, this is a series of essays on topics starting with each letter of the alphabet: A for Acceptance, B for Bullying, C for (People of) Color, etc. Sparrow Rose Jones is autistic and shares some of their story through the essays.

They started the project out of rage against “autism awareness month” and the Autism Speaks organization, which ignores autistic adults and treats autistic children as a dreadful burden on their parents. Some of the essays carry that edge of fighting back against unacceptable treatment. The book advocates for acceptance, inclusion, and support, rather than awareness, othering, and neglect. “Presume competence, and provide support.” Autism is an intrinsic quality of a person, not something that can be peeled away to find the “normal” child or adult underneath.

Sparrow Rose Jones describes their own experience, and also reinforces that autistic people are not a monolith by including references to other autistic people’s viewpoints. In “E is for Empathy,” they strongly question the assumption that autistic people lack empathy, and also refer to Cynthia Kim’s essay The Empathy Conundrum where she discusses having an empathy deficiency. She distinguishes between not being able to sense someone’s emotions, while still having sympathy for their distress when she perceives it. Autistic people deserve acceptance and support whether or not they can intuit others’ emotions.

From the conclusion:

We have explored some serious and often intense topics. Autism acceptance is about seeing the beauty and living the joy of autism, but there are some very difficult aspects to the Autistic life – some inherent and many imposed on us from outside. Autism acceptance includes understanding our struggles and being compassionate toward us as we seek a better life for ourselves and others.

Highly recommended to learn about one person’s experience of being autistic and an overview of others’ experiences, including statistics about poverty, unemployment, victimization, etc.

Note: The author is now known as Maxfield Sparrow. Website: Unstrange Mind.

Available at Powell’s Books.

“Unraveling” by Karen Lord

June 11, 2019 by Sonia Connolly Leave a Comment

Recommended to me by: James Davis Nicoll

A murder mystery is being unraveled by supernatural beings with human allies. Not at all my sort of thing, but it’s a followup to Redemption In Indigo so I gave it a try. Unlike that book, which started off slowly for me, this one pulled me in immediately and I read it all in one sitting.

It tackles some serious topics along with the fast-moving plot. A class system that values land owners over everyone else. Paying attention to who matters and who doesn’t. Adjusting to disability, with a lot of support.

I enjoyed the ride! Stepping back, I didn’t quite follow some of the twists and turns of causality in the plot, and I’m not sure I agree with some of the deeper implications.

Available at Powell’s Books.

“A Headache in the Pelvis” by David Wise, Ph.D. and Rodney Anderson, M.D.

January 26, 2019 by Sonia Connolly Leave a Comment

Subtitle: A new understanding and treatment for prostatitis and chronic pelvic pain syndromes

Recommended to me by: a client

As is clear from the subtitle, this book is written by and for men, or at least people with prostates and penises. The book is focused on physiology rather than gender, and a lot of the information applies to everyone. They do include a chapter on the physiology of people with vaginas as well.

When people go to the doctor with pelvic pain, they are most often given antibiotics. If the pain persists, they are sent to psychologists, or recommended for surgeries that usually don’t help either.

The Stanford Protocol addresses chronic pelvic pain through a combination of trigger point release and conscious relaxation. Their model is that most pelvic pain is caused by chronic tension, similar to a tension headache. Trigger points in the muscles are released through a combination of external and internal massage by physical therapists trained in pelvic work.

The book carefully covers other causes of pelvic pain before turning to the Stanford Protocol. Pelvic anatomy is illustrated in detail, with common locations of trigger points.

Paradoxical relaxation is taking time to be with tension, without avoiding or trying to change it, and also separating tension from pain, even when they are occurring in the same place. It is similar to Inner Relationship Focusing in its attitude of warmth and acceptance toward exactly what is so right now. In this space of acceptance, muscles can begin to relax and the nervous system can calm down overall.

They note that the same trigger point can cause more or less pain depending on the overall level of nervous system activation and anxiety in the body.

The authors also recommend briefly checking in with pelvic tension and inviting it to relax many times during the day.

Their method is “inconvenient” since it takes a long time and requires hours of physical therapy and relaxation practice. They teach people paradoxical relaxation and self-treatment for trigger points in 6-day intensives. They claim their method works for about 80% of people who try it, most of whom are desperate after running out of other options.

Recommended as a knowledgeable, practical, compassionate approach to pelvic pain.

I also skimmed through “Wild Feminine: Finding Power, Spirit & Joy in the Female Body” by Tami Lynn Kent, which is about pelvic healing for women from both a physical and spiritual perspective. Unfortunately it completely ignores the existence of trans, intersex, and nonbinary people who may have vaginas and not identify as feminine, or vice versa. It contains a lot of practical advice for getting to know the pelvic region and rituals to balance the energy there.

Available at Powell’s Books.

“The Sound of a Wild Snail Eating” by Elisabeth Tova Bailey

January 5, 2019 by Sonia Connolly 1 Comment

Recommended to me by: my cousin

Bedridden with a severe neurological illness, Elisabeth Tova Bailey finds companionship and entertainment in watching a woodland snail go about its life on her bedstand. The snail is housed first with a potted violet plant, and then in an elaborate terrarium. The book describes the snail’s life in carefully observed, lyrical detail. Her illness, circumscribed life, and slow recovery are described along the way, but are not the focus.

Quoted from a letter:

I could never have guessed what would get me through this past year—a woodland snail and its offspring; I honestly don’t think I would have made it otherwise. Watching another creature go about its life…somehow gave me, the watcher, purpose too. If life mattered to the snail and the snail mattered to me, it meant something in my life mattered, so I kept on… Snails may seem like tiny, even insignificant things compared to the wars going on around the world or a million other human problems, but they may well outlive our own species.

I enjoyed learning more about snails, and about resilience. Recommended!

Elisabeth Tova Bailey website

Available at Powell’s Books.

“Belonging” by Toko-pa Turner

October 7, 2018 by Sonia Connolly 2 Comments

Subtitle: Remembering Ourselves Home

The gorgeous, inclusive cover and introduction/dedication to this book grabbed me.

For the rebels and the misfits, the black sheep and the outsiders. For the refugees, the orphans, the scapegoats, and the weirdos. For the uprooted, the abandoned, the shunned and invisible ones.

May you recognize with increasing vividness that you know what you know.

May you give up your allegiances to self-doubt, meekness, and hesitation.

May you be willing to be unlikeable, and in the process be utterly loved.

May you be impervious to the wrongful projections of others, and may you deliver your disagreements with precision and grace.

May you see, with the consummate clarity of nature moving through you, that your voice is not only necessary, but desperately needed to sing us out of this muddle.

May you feel shored up, supported, entwined, and reassured as you offer yourself and your gifts to the world.

May you know for certain that even as you stand by yourself, you are not alone.

With poetic language and myths and Jungian dreamwork, Toko-pa Turner tells her own story of not-belonging and weaves a wider net of strategies to belong better. There is an Outcast archetype who can visit our dreams, and whose patterns we can follow. We can open our hearts to our own pain, and be willing to be more vulnerable (“woundable”) to others.

Her Black Sheep Gospel resonated for me. Adopt your rejected qualities. Venerate your too-muchness. Send out your signals of originality. Go it alone until you are alone with others.

In a lot of this book, I heard, “Try harder! Work harder! Get out of your own way!” While that may be valid advice, I’ve tried a lot of things it advises. It does also touch on fallow time and letting go of connections that no longer work well.

The author is writing from a place when things are going well for her, so she describes her steps in that direction and then prescribes them for others. While I’m glad she landed where she did, I’m not sure it’s so deterministic as all that. She talks both about divine guidance and about taking action on your own behalf. Yes, when things go well, it looks like a mix of those things led you there. A mix of those things can lead people to any number of places, not all of them positive.

The book was published in 2017, so she does acknowledge increasing environmental and political disaster throughout the book. She advises living closer to the earth, returning to more indigenous ways, without noting that all 7.6 billion of us can’t do that at the same time.

Her description of the problem resonated with me. Her solutions, not as much. Recommended especially if you already do dreamwork.

Available at Powell’s Books.

“Through the Shadowlands” by Julie Rehmeyer

August 28, 2017 by Sonia Connolly 1 Comment

Subtitle: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand

Julie Rehmeyer chronicles her descent into Chronic Fatigue Syndrome, and her ultimate ascent into carefully managed recovery. She includes investigative journalism into why Chronic Fatigue and mold sensitivity receive so little credibility and research funding.

She chronicles her relationships as well. She was incredibly fortunate to receive assistance when she needed it, and also incredibly determined to keep surviving and moving forward on her own.

Her mother brought her up as a Christian Scientist, and she herself is a science writer and mathematician. She weaves together her pursuit of medical treatment for her illness along with looking inside for the meaning of the illness and the lessons to be learned. She learns to be in the moment with suffering, and realizes that not all suffering can be solved by trying harder.

With the help of people writing about their experiences on Internet forums, she discovers that extreme mold avoidance and later, careful gradual re-exposure improve her health to a manageable level. She notes that this was her personal experience, and each Chronic Fatigue sufferer responds differently to different possible causes and treatments.

Beautifully written, even the excruciating parts. Highly recommended.

Available at Powell’s Books.