Wednesday, January 20, 2021
Sunday, January 10, 2021
*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.
Why We Revolt: A Patient Revolution for Careful and Kind Care (2nd Edition) on Amazon.com: Why We Revolt
Monday, January 4, 2021
"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.
Tuesday, December 8, 2020
Disclaimer: I do not read, write, listen to, or watch erotica. Often.
I am, however, living in this world so I do stumble across it. And I am a sexual woman who's had reactions that tickle and sometimes ignite certain senses, usually unexpectedly and with a blush of titillation and surprise.
Sometimes, admittedly, I've looked furtively and cautiously around to check the absolute status of my privacy and have allowed that titillation to mature into the commanding pleasure it hints at, and we've worked together to grow that potential into promise. But, usually, I giggle and tickle and walk away.
Yet, even without any immersion or innate interest in erotica, I have noticed a couple things.
Firstly, I am affected by it. Not only in the moment of meeting it, but in my moments of intimacy – both alone and with a partner – as well. In my mind I've played images I've seen, read or heard about. I've imagined I look different, more like the desirable women described or pictured. I've hoped I was making the right sounds and movements so my partner would be as pleased as he would be if having an encounter with women in stories and sexy films.
Secondly, I don't see a lot of variety. Sure, there are smaller, bigger, a few different colours and a sampling of different preferences. If you're looking for taboo encounters between able-bodied fairly attractive not too old adults, I dare you to avoid it for any real length of time. As I mentioned, I don't seek erotica or porn, but it happens to me. (To be clear: I don't mostly mind.)
These two things are different issues that might have one solution. The way I'm affected by erotica is personal, I know that. I have my own insecurities and interpretations. Also, I don't actually watch, read, or listen to much erotica so I'm limited in how I understand it. But still, I feel confident that if there were more variety, more types of bodies and the inclusion of sensory challenges creating stories that illuminate needs we often think are limited to us alone, that leave us out of the sexy narrative – more of us would feel comfortable sexually. When we cannot see ourselves in these erotic scenarios that bring millions of people to websites and channels around the world, it most often plants the feeling that we are not desirable or worth the work.
I am not an expert, obviously, in erotica, porn, or the culture of it. I have admitted more than once already that I don't seek it and rarely take the time to enjoy it. Yet I know it's a real issue. Because, clearly, if I want to see disability represented graciously in erotica it's clear I'd have to work to find it. And according to disabled friends, I'd have to work especially hard to find erotica that stars disabled roles exhibiting agency and desire rather than just as a fetish or novelty.
I am a straight, able-bodied, unremarkable looking white woman in her 40s. It's not a challenge to see myself represented, and yet even I struggle to feel desirable and intuitive in the bedroom. Again, this is common but personal. Yet I truly believe it would be easier for me to feel free to explore my personal sexual side if there was more variety in the representation of sex, desirability, and bedroom moves.
A part of my personal issue has to do with how almost like the sexy ladies in literature and on screen I am. The seed has been planted that if I try I can be like them. And because they are the ones people seem to want to see, well, clearly I ought to give it a go. (It's tempting to add a few paragraphs about how I don't like being seen because I'm shy, and how it's important that we don't sculpt ourselves into something to be seen but rather create ourselves based on who we are and who we are proud of being, but that takes us too far away from the truth that these are common things to remind ourselves of because we're contending with a common desire to be seek-ed and seen. Even the shy among us.)
Interestingly, I often feel more deeply understood and comfortable with my vulnerabilities when I read, watch, or listen to something written by someone drastically different from myself. Someone with disabilities, a boy deciding what it is to be a man, someone growing up in a vastly different culture than my own, these are a few examples of protagonists who have illuminated me to myself. By having such unique experiences from my own they are able to reveal things in ways I was too close-in to realize.
Less surprisingly, they have helped me see people other than myself clearer, too. They have helped me notice others differently. They have helped me understand my brothers (my mom adopted four boys with autism and various other diagnosis) when they want to talk to me, their big sister, about the unique challenges they face, and interests they have, in the world of romance and sex. By representing themselves and the way they experience the world, they have given me the gift of seeing and of trying to understand.
They have given me a feeling of kinship with, and interest in, differences.
If I saw more of that in stories about sex and sexuality, I couldn't help but be more comfortable exploring my own differences. My own uniqueness. My own desires and pleasure points. I'd be more comfortable asking for and seeking my partner's uniqueness, desires, and pleasure points. I'd probably be better at recognizing them, too.
The only way to authentically shift the genre of erotica into a more diverse and inclusive place is to include diverse artists. My guess is these artists are more likely to create erotic art when they see themselves represented in it.
Luckily, there are always a few outliers and brave creatives doing what needs to be done.
So for those of you that seek and see erotica, those of you who like to listen to or read sexy stories, I hope you'll take the extra time to find something different. Something that explores a body you are unused to seeing. Not every time, of course. But now and then.
Perhaps you'll find something surprisingly sexy! And even if that isn't your experience, at least you'll know you're giving some – ahem – exposure to people who are publicly exploring their intimate selves in hopes of being experienced.
Thursday, November 26, 2020
Sunday, November 1, 2020
|Me and my Brother|
“I just wanted to be nonjudgmental and accepting.”
My brother was looking at me expectantly, his big sister who always had something to say about the things he had to say, and had to wait an uncharacteristically long time for my reply.
His confession had caught me off guard and left me momentarily at a loss for words. I was too deep in a thick fog of feelings that understood and feared and felt and didn't know the right answer.
My brother had been assaulted in his apartment by a man he had opened his door to, despite the late hour and unlikely explanation for it. Of course my brother had opened his door to this stranger knocking at an inappropriate hour with a weird reason, that was who my brother himself often was and didn't he only want people to open their doors to him and hear him out?
Oh, my heart was aching and my ideas lacking.
I find myself wrestling often with this question of balance. Not judging too harshly, being open and accepting and helpful and willing to open doors or accept ones opened to me, while being safe and careful and teaching my children to do the same.
This is a big important thing and once I was able to fight out of the fog of feelings and find words, I admitted as much to my brother.
We talked a long time about how valuable it is to strive for a world that isn't so focused on defending itself that it won't risk opening doors when people are reaching out to us in unusual ways at unusual hours. There are so many people like my brother who struggle with social cues and norms and end up craving company and kindness at unusual times and in unusual ways. We talked about how hurt he himself felt when he would knock on a door at an unusual hour asking if he could look at the old cars in the yard only to have the person call him cruel names and threaten to hurt or even kill him if he ever came back. And I reminded him that it wasn't necessary for the people to open their doors and let him in for him to feel less hurt. Had the people – as some had – asked him to come at a better time and not immediately reacted by speaking to him in anger, that would have been accepting.
But there are so many grey areas here. And in the end each situation will be different and often difficult and it's just easier to push people away when they are strange or unlike us. And it's even sometimes safer in the moment.
But in the bigger picture, in the world where we keep kindness alive mostly only during business hours and when we understand easily the problem (dead car battery, missing animal, not quite enough money at the checkout) and push or react in anger when the person doesn't make sense to us and we feel overly inconvenienced or inadequate, or where we overcompensate by being ridiculously (and temptingly) generous and yes oriented, we are not building a safer world.
You know, I don't want you to open your door to my brother when he knocks at 10PM asking to peek in the windows of your cool looking old car. Not unless you want to. But I also don't want you to threaten to kill him or call him a f*&%ing lunatic either. I think you can simply tell him to leave and that it's too late for him to be there. You can tell him that you aren't comfortable and even that you don't want him to come back. I hope you will tell him these things, because I also don't want my brother to knock on your door at 10PM asking to peek in the windows of your cool looking old car. It's late. I'm generally in bed by then and maybe you are too.
I talked with my brother about this and more. I gave him specific tips about not opening his door or inviting people in at certain times or when he doesn't know them or simply if he just doesn't feel right about it. He can simply say no. Or pretend he's not home. There is nothing judgmental about that.
I don't know if the man who assaulted my brother would have moved on to assault someone else, had he not been granted access to my brother's apartment. I don't know if that one “no” would have stopped him that night, maybe even prevented other nights. That is possible. Not permitting the harming of others is part of how we teach not harming others. So, it's possible. Though not promised.
But had my brother not granted access, I do know it would have prevented his own assault. And in this specific instance it is my brother that matters to me. Not society, not the story of how that man ended up knocking on a door to rape my brother, not you and your cool looking old car in the yard, my brother.
I wish he would have known he could say no and still be nonjudgmental and accepting.
And since that day we have practiced and both gotten better at it.
I admit, it's not easy to know how to help when people are extremely unlike us. Or struggling in unusual ways. Movies can make us want to be the one who reached out and calmed a situation down or helped an outlier or struggling person during an extreme time of stress or hurt. But when we're not in a movie we generally have no clue how to truly do that safely or correctly.
It isn't easy. It isn't obvious. Not for most of us, anyway.
But I'm proud of my brother. He was able to pinpoint where he went wrong, he talked with courage to the police about what happened, he leaned on me and our mom to get through it but also took the reins on his own healing and chose lessons to learn. The learnings didn't make the assault a good thing, being raped in your apartment is not ever a good thing, but he did good things with the hurt that happened to him. I'm proud of my brother.
I hope he'll always let me talk and learn with him in similar intense and important ways.
And I hope he and I will continue to grow safer and kinder and a little bit smarter together.
Monday, July 13, 2020
"I want to point the camera and smile at you."
When Jory (my oldest son) was five he would say this, wanting to use my camcorder to take a video of me. Even now, more than twenty years later, I hear the sentence in his sweet five-year-old voice.
I hear it in part because I have remembered it so often, holding it close the sound has yet to disappear from my memory. But also because that is still, more than twenty years later, who Jory is and how he likes to view the world.
From his earliest years, Jory has loved to see the world and the people in it as part of one connected movie. Everyone plays a part and is written in for a reason. Over the years he has grown this vision into something extraordinary. From being too bossy (he was the writer and director of his brothers, he was quite sure!) to being too laid back (whatever happens, happens and it's all groovy man) to fighting for his right to choose happiness even though the world is filled with war and hunger (he wrote about that HERE) to now, as a father of three and husband to one, he sees his role as all of the above and mixes it up as best he can.
He is writing and directing his story, but his story is not only his own and so he asks and allows the narratives of others to influence his. Not only that, he also reaches out and asks for help. Ideas. Collaboration.
This is how he sees the world: We are all here together experiencing this epic story and it is incumbent upon us to be both inclusive and decisive. Know your goal well and invite others to help you get there. Jory has a way of believing in his independence and responsibility while not shying away from reaching for support from others.
He loves to bring a team together and inspire everyone to share their strengths, ideas, and hard work - something he does well as a movie theater manager. (He misses it for sure! Movie theaters are still closed due to COVID-19.)
At the moment he's using his skill as a gatherer of community and support to help his family find a home.
They are not homeless. And in truth, they don't have to be homeless even if they can't quite find something before their current living situation disappears. However, family help options are slimmer than usual and not the forward motion he and his family are working toward. (A strange and wonderful shifting of places is happening everywhere in my family. It's exciting! But because we are all in this unique transition there is less reliable space to offer.)
The home he and his family are living in at the moment is my mom's home. However, it will no longer be hers by the end of the summer (which, by the way, is exciting! She and my brother Dar are embarking on an RV life adventure!) and so Jory, his wife, his daughters and soon-to-be born son are looking for something affordable in the area. Admittedly, they are happy to move away from the area if Jory can transfer to a Regal Cinema near a new home. But he truly does love his location and the people he works with.
And, as is Jory's beautiful way, he is reaching out and inviting us to play a role in this story!
He created a GoFundMe fundraiser, in hopes that the financial burden of first and last rent, rent applications, and moving in general, can be shared.
He and his wife are reaching out to everyone they know to ask for ideas, advice, and recommendations.
|Jory's fundraiser: A Home for our Family|
Admittedly, they are nervous. Transitions tend to create anxiety even in the best and easiest of times, but when you are trying to find a home for your family and start on an unknown brand new journey (not only will this be the first time they live together as a family without other family members there to help, all the helpful family members are in transitions of their own and will likely be quite far away) the anxiety threatens to turn into full-blown paralyzing fear that leaves you sitting around hoping your mom will swoop in and fix everything. (Or, wait. Is that just me? Maybe I shouldn't have said that out loud. tee hee!)
Well, this is me - his mom - swooping in and not fixing everything but asking if you are able to play a role in this story and help us build something: a home for his family out of a community of characters that cares.
If you are able to contribute something financially, thank you! If you can share the fundraiser on your social media, or in an email to someone you know, thank you! If you have ideas, experience, thoughts that might help them find a safe place to live, thank you! They are hoping to stay in the Simi Valley, California area (again, that's where the Regal Jory works at is) but are happy to move elsewhere. This is an exciting time in their lives and beginning somewhere new could be part of the Universe's plan. It's hard to know. This movie is not yet at its end. And we are not unaware that creating something beautiful is always possible and not location dependant.
Regardless of whether or not you are able to take an action we can see, I trust you - who have read along - are playing a part in this story. And for that, I thank you!
In the words of five-year-old Jory:
"I want to point the camera and smile at you."
Hugs, smiles, and love!!
Autism Answers with Tsara Shelton (Facebook)
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Link to Jory's GoFundMe: Fundraiser by Jory Shelton
If you want to email Jory with ideas or recommendations: firstname.lastname@example.org
If you'd like to connect with him on Facebook: Jory Shelton