Autism asks challenging questions, begs us to think outside the box and then...Autism Answers! Musings, shared family stories, book reviews, and short fiction. My posts are rarely specifically about autism or parenting. They are, however, almost always stories grown from the fertile and organic thinking soil that can be found where the two come together.
Wednesday, January 20, 2021
Autism Answer: Beautiful, I Feel Ugly Today
Sunday, January 10, 2021
Autism Answer: Why We Revolt: A Patient Revolution for Careful and Kind Care - Book Review
*I originally wrote this review for Disabled-World.com. I highly recommend visiting the site and reading the valuable and eclectic content published there!
When I was a little girl and my mom complained about the lack of kind care she or my brothers were offered, despite my mom's excitement at collaborating and sharing ideas with experts in the field of disability, I thoughtlessly assumed my mom was expecting too much from people. I also wondered if people like my brothers could even tell when they were being treated with kind care.
I, clearly, was not good at kind care.
Over time, with my mom's insistence and persistent modelling, I became better at it. I also began to see the lack of it offered elsewhere. And once I saw it, I couldn't stop seeing it.
For those without a mother or brothers like my own, Why We Revolt: A Patient Revolution for Careful and Kind Care by Victor Montori can play the role of insistent friend that persistently models what kind care is, how we can and why we should require it for ourselves and our society.
Why We Revolt is an urgent book with a relaxed and poetic pace. It think this sets the tone for how we must revolt; with urgency that understands kind care is often relaxed and poetic. It is collaborative and creative. It is challenging and exciting. It can save lives and it does create better living.
The author, Victor Montori, MD, Msc, is a professor of medicine and a diabetes doctor at Mayo Clinic. His desire for kind care in all fields of healthcare shines through in the stories and essays throughout the book. But because diabetes is so often a lifelong disease, necessitating that care, medicating, and maintaining health become a lifestyle for diabetics, it is often through these stories that we feel the full impact if how careful and kind care can deeply affect our world.
The book is a collection of moving essays, written from personal experience within the confines of industrialized healthcare. Regardless of where you live in the world, of where you deliver or receive your care, the corruption of contemporary healthcare is affecting you. With compassion and passion, Montori shares how working within the confines has made giving careful kind care a challenge for him, personally. He exposes ways our streamlined healthcare, meant for patients like you rather than you, is disconnecting us from caring. It is hurting our ability to become holistically healthy. However, one of the things I loved about reading Why We Revolt, is Montori builds every story around a vision of – and belief in – effective and kind care.
For a book that consistently reveals and reminds us of the harm being caused in healthcare systems around the world right this moment, it is surprisingly lovely to read. Rather than display anger and provoke readers to feel hate and blame, it excites us with possibilities and envisions a different system that is built of love for humanity and honest science. This book is careful and kind itself.
Why We Revolt explains with clarity so much of what is wrong with healthcare today, putting clear words to what most of us suspect even when we can't clearly state it. Through the stories and insights, it connects us; caregivers and care receivers – reminding us to fan the flame of noticing each other in order to know how to help each other.
This book reminded me of growing up with my mother. Of how over and over she hoped for creative care when reaching out to professionals, particularly in the case of my brothers who had autism and other various cognitive challenges. How she would attempt to shed skepticism from past professional encounters and meet each new caregiver with a fresh attitude. And how over and over they would be unable or unwilling to offer themselves in a human capacity. To notice my mom and my brothers as individuals and collaborate in order to create individual protocols and regimens.
One passage in particular stood out and reminded me of how my mom decided to run her own clinic. Dr. Montori writes: “There is no natural law that commands corporations of any kind to place the interests of their stockholders and administrators first. A more natural law would state that if you meet or exceed the needs of your customers, if you respect the people you serve, if you don't lie to them or shortchange them in the quality of your offerings, and if you don't extort them, their loyal business will follow.”
My mom is an international brain changeand behaviour expert so her clients, eventually, do not need her anymore. Their loyal business manifests as word-of-mouth recommendations and invitations for her to speak, but the point is the same. Give quality, kind, careful care and your healthcare business will thrive because a healthcare business is thriving when it is offering quality, kind, careful care.
“Time is not money. The depths of time are the currency for caring.” ~Victor Montori
Why We Revolt is a book that belongs in every personal library. It can be devoured in a sitting or two, and continually referred to when the reader wants a reminder of how and why we must revolt.
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Why We Revolt: A Patient Revolution for Careful and Kind Care (2nd Edition) on Amazon.com: Why We Revolt
Monday, January 4, 2021
Autism Answer: Envision Clearly and Keep Moving in the New Year
"The universe constantly and obediently answers to our conceptions; whether we travel fast or slow, the track is laid for us. Let us spend our lives in conceiving then." ~Henry David Thoreau
I don't know about you, but for me and my family 2020 was a strange year. Actually, for my friends as well. And for my friend's friends. Hmmmm... maybe it's something in the air. ;D
In all sincerity, though, I send my love to everyone. Many of us have lost loved ones in this pandemic, in various ways. Losing someone is always emotional. Whether that loss was our choice or not, whether it was a loss we would do anything to undo or one we courageously insisted on, whether it was letting go so someone could become more of themselves or pushing away to become more of ourselves, it is always emotional.
This has been a year of change for almost all of us. Work, school, relationships, grocery shopping - everything is done differently now. Some things drastically so, some things only slightly. And we are required to find balance, shift our feet, make choices and form opinions about things we've barely considered of note in the past.
I know that my family has worked hard at using this time well. At finding this forced-upon-us moment at our doorsteps and trying our darnedest to turn it into an opportunity to strengthen what needed strengthening and let go of what needed letting go of and pushing toward almost entirely new visions of and for ourselves.
I also know that for all of us, every single one of us, it has been undeniably emotional while being simultaneously scary and exhilarating. Everyone in my family, every one of my friends, we are all being pushed to make changes and we are choosing to make the changes we were often either too scared or satisfied to make.
It's wild, really. Practically everyone I care about is in a state of almost. Precariously perched at the entrance of entirely different styles of living, staring into an unfinished picture of what they are hoping to accomplish; ingredients and ideas and hopes are floating before us in an abyss of possibilities and while we reach out for help and support from each other we are also on our own. The shifts of who leans on who and how we all lean on each other is leaving us a little bit dizzy. Where we are now would have been incomprehensible only one year ago, and yet here we are. Entirely real and in a state of almost. *
*I want badly to get specific here, to share with you all the ways in which my family is shifting. Moving to new places, living with new people, changing careers or looking for work after being in a dream job that felt permanent, losing homes and leaving people behind. I want badly to tell you the hopes we hold in these shifts. New found confidence and happiness, independence for those who only dipped a toe in, discovering what love is and all it might have to offer. But, as I mentioned, we are all in a state of almost. And so, for now, I hope you'll accept my vagueness as being purposely inclusive. Because, it is. The entire planet feels on the brink of almost and we are scrambling to make the best of it. We hope to build new systems where old ones were harmful. And in most homes there are personal hopes at the surface that were being stifled or avoided. And around the world people - forced as we are to do things differently - are seeing things in new light and making big changes. So, I think, you get what I'm saying even when I'm not being specific.*
So my resolution this year is to envision clearly and keep moving. To not try only for the easy life but for the best one, the one that cares about me, my world, and the people in it. I hope to help my loved ones do the same. I'm going to do my best to find balance regarding the timeline - no need to push forward so fast we push past possibilities. But let's not move at such a leisurely pace we lose this momentum. Let's not risk losing sight of the things we want to change, the things we were settling for and unhappy about - or simply the opportunities we were avoiding - before this pandemic began.
Confession: This is more work and takes longer than I want to admit. I love to talk about how everything is awesome and when we tell ourselves our stories with happiness and joy we will feel that happiness and joy. I think that's true. But I also think it helps to hold up a big hefty book once in a while to remind ourselves that big stories are long.
Big stories, colored-in with little stories of varying shades, when crafted carefully are truly one of the most sublime things made by humanity.
So with that in mind: Envision clearly and keep moving. Envision with kindness and intention and keep moving toward that vision.