#ShePersisted: The Disability Edition

As a proud Massachusetts resident I absolutely got the full-body tingles when Sen. Warren did what she does best: standing up for justice in the face of oppressive bullshit.

You’ve all heard it now about how “…Nevertheless, she persisted.”

Empowering words these days, and if you’re anything like me you’re probably looking for more reading material to quench your souls! So, me being me, I figured I’d share a list of books with the theme “she persisted.”

Below are some books I’d highly recommend where women weather all manner of social, natural, and unnatural forces with panache.

#ShePersisted: The Disability Edition

1.) We Should All Be Feminists by Chimamanda Ngozi Adichie.

If you haven’t heard of Adichie before, you need to HURRY to your nearest library or bookstore to get any words by her. But this small chapbook is based off of her TEDx talk where she tells the audience a story that feels like we’re totally swept away elsewhere.

Reading her words is what I think the experience of cramming your brain full of brightness without feeling like you’re learning is. In my perfect world it is what being a feminist would be like, easy and bright instead of angry and burdensome.

Until that day comes we have Adichie’s powerful simplicity to help propel us forward.

2.) Ruby Fruit Jungle by Rita Mae Brown.

I was given this well-worn book by my friend Cindy (who will evil side-eye me for subtly revealing her elder status..). When I first got it I thought “cool a real vintage lesbo novel!” 
This was my first Rita Mae Brown book that I’d ever read and immediately I knew I wanted to be best friends with the spitfire main character, Molly Bolt. Molly is an adult in miniature when we first meet her.
Wielding a snarky tongue that resonates with my twisted humor, Molly has the kind of personality that could only otherwise have been developed after years of struggling to figure out what she wants. But it’s not just that by the 6th grade Molly realizes she is a dyke that makes this book revolutionary – it’s that in 1973 when this book was published, I imagine Rita Mae Brown did so with a proud middle finger to the patriarch.

3.) God Help The Child by Toni Morrison.
All of the women in this book have flaws, and it’s not often in literature that we find women carrying these flaws throughout their lives. Instead, often times the tropes for women are dull and stereotypical. Usually women are either needing to be saved, or she is burdened by her family, or she is a dependent, or she has some epiphany about love and how it doesn’t define her.
But the women in God Help The Child are complex because they are defined by blue-black skin color, social ideas of her skin color, her mother’s shame about her skin color, and the histories of the implications of her skin color that existed before she did.
The realities of women are hardly skin deep and Toni Morrison packs a punch to deliver it all.

4.) The Boston Girl by Anita Diamant.

Okay so, maybe slight bias including this one here because I am from Boston after all. But I think more than ever that knowing the history of how women were treated is vital to our progress.

This is a story of a grandmother re-telling to her granddaughter what it was like to grow-up as a Jewish girl in Boston’s North End.

It’s not just a quaint grandmotherly story as we learn about how her family lived in the tenements, the tactics women at the time used to resist!, and how immigrant culture has shaped generations of this family. This is a story that makes the political personal, and the personal into a deeply entrenched truth that cannot be ignored by posterity.

5.) Hyperbole and a Half by Allie Brosh.

This is a graphic novel with some of the most insightful comments on mental illness, and depression that you will ever read. A

lso, it has lots of color and stick figure drawings that remind us you don’t need to be all packaged together with a bow on top, and then present yourself in a neat easy-to-digest manner to be taken seriously.

So that’s why I included this one on this list because sometimes we all need to be reminded: screw expectations, this is how I’m going to wave my freak flag! These squiggly animated drawings convey a range of emotions that will often take you by surprise. You know how they say, a picture says a thousand words!

6.) An Unnecessary Woman by Rabih Alameddine.

When was the last time you read a book about how a woman survives the Lebanese Civil War? ‘Nuff said.

This is not your typical war story. I actually put this book down the first time I got it because I couldn’t quite get into it on the first try. But then I came back to it almost two years later, and I’m glad that I stuck with it.

The main character is Aaliya who is in her 70s, and has spent her adult life translating works into Arabic. Why? Because she wants to, and that is how she spends every New Years day – choosing a new work to translate. This is a story about one woman’s love of literature, and ultimately how women band together to bring out the best in each other.

7.) Salvage the Bones by Jesmyn Ward.

The writing here has stayed with me for years after I’ve put this book down.

Esch is a pregnant teenage girl who is largely left to her own devices in the midst of her father, and brothers in a rural impoverished town in the South. In an environment that is shaped by the men she is surrounded by, and the side culture of dog-fighting – Esch soon realizes that a male-dominated world is not the only thing in her way.

I don’t usually cry when I read books, but I sobbed through much of this by the time Hurricane Katrina wallops their home. How does a family survive in this situation, and more importantly how does a young woman survive for her family?

8.) Don’t Call Me Inspirational: A Disabled Feminist Talks Back by Harilyn Rousso.

This book will always have a special place on my bookshelf, and Rousso’s words will forever be emblazoned in my soul to keep my crip pride fierce.

This book first delineated for me the differences between living with a diagnosis, and identifying as disabled.

What may seem like a simple shift in paradigm for me has actually become my lifelong commitment to social justice and activism. Rousso throws the messiness of disability life on the pages to flip the social convention of typical disability tropes in literature – so the only thing readers are overcoming are their own misconceptions.

It’s clear that being a disabled woman is never going to be easy, but knowing there’s women like Harilyn Rousso who live the life unapologetically is equal parts empowering as it is humbling.

9.) Fun Home by Alison Bechdel.

I doubt I really have to write much about this one as most probably have heard of the Broadway musical.

In a home environment that was equal parts morbid as it was traumatizing, Bechdel grows-up discovering herself as much as she does her late father.

It isn’t often when we see relationships between fathers and daughters being analyzed in such detail with such sadness, and humor. By the time Alison realizes her own lesbian identity, the elephant in the family that is her father’s closeted life is all but flung into the open.

I think that the way Bechdel has been able to develop her family’s past into a multi-layered narrative is a skill that I cannot even begin to imagine having the patience to do. It is so often those closest to us that we have such a difficult time seeing objectively, and under more than one lens.

10.) My Body Politic by Simi Linton.

This is a memoir of a woman who on her way to a Vietnam war protest from Boston to D.C., and winds-up in a car crash paralyzed.

But stop right there because what begins as a tragic political act only catapults readers into the throes of disability activism. Simi Linton is hospitalized and sent to rehab at a time when none of the patients were taught how to be disabled, only how to manage their injuries.

Linton takes us directly into the heart of grassroots organizing as she schemes with other patients in the rehab center to redefine sex, we go onwards to the Society for Disability Studies, and then gradually to a life of how her personal is political.

Sandy Ho's Guide to the Disability Edition of books that relate to #ShePersistedFollow Sandy!

I follow Sandy Ho on Instagram (@oiperfect). She often has a photo of herself with a book she’s reading, and it always looks interesting. When I saw a recent update on Facebook with her Top 15 books of 2016, I jumped up and asked her if she’d guest post here – I’m always looking for good reads, and I’ll bet you are too!

Top 15 Fiction Books for 2016: Guest Post by Sandy Ho

Reading fiction is where and how I derive my energy.

There is something centering about getting absorbed into a story, and 2016 has been a year where feeling grounded has been a strategy for survival: whether escaping from headlines, or “to-do” lists.

Over the past few years I’ve made an intentional effort to not read consecutive books about the same place, or the same types of people, or by authors of similar identities. I read to gain perspective because as much as it is a way to pass the time, it’s also an enjoyable way, for lack of a better phrase, to exercise the heart and mind.

So my reading isn’t driven by any one particular agenda, and the presence of disability doesn’t make or break my decision to read a book. Since I don’t “read for disability” when disability does come up, it’s typically a refreshing surprise! I’ll admit I’m a picky reader, and many times the “latest book everyone else” is reading will be one that I can’t stand (Sorry… Gone Girl). This means that the majority of my selection choices are based off of browsing for hours at the library or the neighborhood indie bookstore.

Below is a list of Top 15 Fiction Books whose stories have stuck with me between all of the outrage and heartbreak that 2016 has witnessed. I figure if these stories have lingered in my mind throughout a cacophonous year it’s probably a pretty significant story in someway!

(These are not listed in any particular order. * = presence of disabled character in the story.)


1.) A Long Way to a Small Angry Planet by Becky Chambers *

Read If You – dream about living on another planet and pursue social justice with a passion.

Gift to the person – who loves sci-fi, doesn’t matter if they’re a Trekkie or a Star Wars fan!


2.) Burial Rites by Hannah Kent

Read If You – enjoy winter and murder stories; takes place in the 1800’s, based off of the actual woman who was the last person publicly executed in Iceland.

Gift to the person – who is a lover of nature and history.


3.) God Help the Child by Toni Morrison *

Read If You – don’t have time to sink into something long-winded: a blue-black skinned girl is born to a light-skinned mother, how one treats the other will not only impact just these characters.

Gift to the person – who has been going through tough times with their family or relatives.


4.) Turtle Moon by Alice Hoffman

Read If You – want to know what magic lies in the swamplands of Florida besides the story of a runaway teen, and a kidnapped baby.

Gift to the person – well-balanced between the ground beneath their feet, and the clouds.


5.) Too Bright to Hear Too Loud to See by Juliann Garey *

Read If You – want an atypical adventure story as a bipolar man retells his world travels while getting electroshock treatments.

Gift to the person – who is the eccentric happy-go-lucky type.


6.) Here Comes the Sun by Nicole Dennis-Benn

Read If You – would like to meet 3 no bullshit women you’ll wonder where they’ve been all your life; Montego Bay setting is a minor perk next to their radiance.

Gift to the person – who is vivacious and is always going to ‘do their own thing’


7.) Frog by Mo Yan

Read If You – are curious about how a single social policy in communist China winds it way to impact marriages – abortions – midwifery – national loyalties.

Gift to the person – up on the latest international conflict.


8.) Infinite Home by Kathleen Alcott *

Read If You – need a reminder that family is also composed of the people you choose.

Gift to the person – who is your “ride or die,” or someone you’d like to tell “I’m here for you.”


9.) Mislaid by Nell Zink

Read If You – would be humored by a more absurd plot than whatever Trump is tweeting; beginning in the 60’s this is packed with witty commentary on sexual orientation and race relations.

Gift to the person – who has been a free-thinker since Nixon.


10.) Oil on Water by Helon Habila

Read If You – want to explore the Nigerian Delta from the perspective of two journalists whose mission is to report the story, and find the wife of a British oil exec.

Gift to the person – consistently reading the news.


11.) About Grace by Anthony Doerr

Read If You – want to learn more about snowflakes, or wonder what it would be like to see, and then escape the future.

Gift to the person – in your family who would do anything to save all of you.


12.) The Time Traveler’s Wife by Audrey Niffenegger *

Read If You – want your heartstrings pulled, and wish winter could fly by as quickly as these 500+ pages surely will.

Gift to the person – newly in-love, not the “so like, I have a crush”-way but that committed-for-life kind.


13.) Homegoing by Yaa Gyasi

Read If You – want a structure of a story as impressionable as the way slavery ricochets thru this family tree, and becomes anchored to the spaces of each generation.

Gift to the person – burnt out from mobilizing around racially driven conflict that has happened, and that will come.


14.) A Little Life by Hanya Yanagihara *

Read If You – want to be pushed to the extremes: wincing psychological trauma, and cheer on (be jealous of? be frustrated by?) complex prodigious bonds of friendship.

Gift to the person – you are certain without a doubt has a backbone of steel, and is fiery with warmth in the cockles of their heart.


15.) The House on Mango Street by Sandra Cisneros

Read If You – like me, never read this in school, or read it in school but you’d probably appreciate it outside the classroom even more now.

Gift to the person – just moved to the United States, or an anxious young person beginning a new lifestyle.




top 15 books for 2016Follow Sandy!

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School will be starting next month over here at The Best School Ever, but we are starting to get our ducks in a row for the roadschooling we’ll be engaged in, come October when we hit the road again.

The Best School Ever will be working with us on a homeschool curriculum for the kids (- Micah and Moxie, both) – I’m working on uploading books to kindle, getting apps in order, figuring out how to integrate the sweet businesses of travel and education.

One of the biggest things on my mind has been books.

Micah is 6, he will be entering first grade. But as an advanced reader, he’s stuck in this quagmire of being able to read at a higher level, but the content in higher level books isn’t always appropriate. Also, he likes pictures – don’t we all! – so there’s that. He loves good stories with lots of visual detail.
I went and asked the Facebook hive mind for suggestions and the results were so good, so rich, so worthwhile, that I feel like I”d be a crappy friend if I didn’t post the whole list here for you too – so here it is, with special thanks to Megan for really going above and beyond with the suggestions.
* THIS IS A KINDLE-HEAVY LIST * – We simply have to have kindles and books need to be on kindle right now for us. It’s a must. More on Kindles at the end of the list…

Magic Tree House Series

This was recommended by more than one person, and the funny thing was, I went over to Amazon, checked it out and purchased books 1-4 on kindle. Then I showed it to Micah as a surprise. He said, “oh, you bought me a Magic Tree House book? YAY! I LOVE THE MAGIC TREE HOUSE!” – it turns out that he read the newer books at school but not the beginning of the series.
Good job. He’s psyched.

The Boxcar Children Books 1-4

This series goes through 12 books? I’m not totally sure, but I do know it’s a classic, it’s very well loved, full of magic and adventure and it’s on kindle. That means it’s part of our library now, ready to be read on the road!

How to Train Your Dragon

I just ordered it as it’s on kindle and I know it’s going to be a hit with him. It looks like it’s a 4-book series, full of pictures and great adventure. Yay and yay!

Adventures of Tintin

This is a call-back from both Mikey and my own childhoods – we both read Tintin in the comic form as kids and LOVED THEM. I want to say – if you do order these off of Amazon, be careful because there are some “Amazing Adventures of Tintin”, etc that are about the series; they are not the actual comic books. There are some movie tie-in books too – those aren’t the real deal! Make sure whatever you buy is written by “Herge”

The Golden Compass

Confession: Chris recommended it and I went and bought it for myself, not Micah… it looks really great and I’m tired of everyone getting killed in Game of Thrones. If it’s suitable, I’ll share with Micah..!

Encyclopedia Brown

Super awesome! Another mystery series. What is it about that age and mysteries?!

Roald Dahl

this link is the page where there are a lot of Roald Dahl books: James and the Giant Peach, Matilda, James and the Giant Peach and the big Phiz-Wizzing box collection (- all his kids books, together). I’m not going to be introducing Roald Dahl to Micah/the kids for a while because I think there is some pretty mean stuff in there that I don’t want to get into or have them reading like it’s fun

Harry Potter and the Sorcerer’s Stone (Book 1)

YES!! My goal this year for Micah definitely includes this guy from Hogwarts! Oh yeah. I think book one will be perfect for him, and I may very well get it on Audible too (see below)

Little House on the Prairie

I want to introduce these books to the kids but I don’t think the timing is right (- they are not on kindle and I couldn’t find them on Audible either). I think next summer in real-print-book form is what we’ll need to do. But for sure: the adventures of Laura and her family will dovetail pretty nicely with our own

A Wrinkle in Time (Madeleine L’Engle’s Time Quintet Book 1)

This is my all-time favorite book series. I re-read these as an adult (- A Wind in the Door still blows my mind). I’ve got these on the short list for this year. I think Micah will be able to *get* it so long as we read it together and work through some of the concepts (- night time talks about tesseracts on the beaches of Mexico!)

Pippi Longstocking


Who Was Helen Keller? (Who Was…?)

This is a whole series – “Who Was” – Dr. Seuss, Anne Frank, Jane Goodall, etc. It looks pretty cool

The Mouse and the Motorcycle (Ralph S. Mouse Book 1)

Micah started this last year and LOVED it. We just got the paper book, but I see it’s on kindle – yay!

The Borrowers

I read this when I was a kid – and there is a Japanese anime movie based on this book (The Secret World of Arietty). It’s an awesome series – little tiny people who live in the houses of big people and “borrow” everything. Kind of like our mice. But a lot nicer. Oh, and the series is very British.

The Littles

Sort of like the American cousins of the Borrowers! Another great series that I’ve got on his list

Stuart Little

Mysteries and small creatures for this age, huh? But yeah. This is a great one. Same goes for Charlotte’s Web

Audible/Kindle Classics

We downloaded these on Audible for Micah:

We subscribed to Audible when we were on the road. The kindle book automatically downloads too if you get the Audible version. So Micah would listen to the stories while driving, then he’d be so into them that he would continue when we arrived somewhere, and usually would pull out his ipad with kindle app and read along while listening. THIS IS GOLD> an absolutely excellent way to help your kid with the big words, to read for hours and thoroughly enjoy stories, inside out. I can’t recommend it highly enough.

When we hit the road in October, I’ve got these ready for him:

The Lion, the Witch, and the Wardrobe: The Chronicles of Narnia

Even though this is also an Audible/Kindle purchase, I’m putting this by itself. The Chronicles of Narnia are simply a *must* as I see it – I think the Audible/Kindle option will be perfect for Micah and the road, but if we were able to sit down and read it with him via a paper book, I’d do that. He’s at a good age for this stuff and this series is simply the best, isn’t it?

 Mrs Piggle Wiggle

I adored Mrs Piggle Wiggle when I was a kid – this quirky lady who lives in an upside down house and has these amazing “cures” for kids who have issues. FUN STUFF! – Not available on kindle though

and books by:

Bill Peet

My buddy Megan recommended this and I want to check them out but they are not on kindle, so I’m going to wait until school starts and then head for the school library. They look really cute – great pictures
 Red Sings from Treetops: My buddy Laura recommended this and it looks lovely (- plus, she said it makes her cry when she reads it to her daughter – I love that kind of book!). It’s almost $10 on kindle though, so I’m going to check it out at the library first

 The Truth of Me: A “poignant story celebrates how our unique “small truths” make each of us magical and brave in our own ways”. Short and full – I haven’t read it, my friend Sue recommended it, so it’s going to be read!


Scholastic Book Wizard: search for books by level, books similar to, etc.
Best Sellers in FREE Amazon Children’s eBooks – a collection that is updated daily based on what is going hot on Amazon. All FREE!

International Children’s Digital Library – you read the books on the site, but very cool stuff here

Children’s Story Books Online – more free books to read on the site. Focused a little more on beginning readers

Public Library/Overdrive – Overdrive is the free e-book system that works with the public library. I got really excited about this before but, WHOAH, long waits for many, many books! I’m talking, six months, “long waits”, it’s kind of ridiculous. Check it out though and see if the wait times with your local library are shorter because if they are, it’s an awesome resource

Aquila Magazine – my friend Yolanda’s daughter reads this and it looks really awesome. I am not sure if it is possible to get it in e-zine form, it looks like it’s just print. But WOW, looks like a lot of fun for a kid to read.

A Mighty Girl: Books for Smart, Confident and Courageous Girls: I don’t know about you, but I want my sons growing up to be feminists and I think having them read books for smart, confident and courageous girls is one way to go. These book lists are massive and well organized and categorized – definitely worth a book mark and long look-see.

Newbery Medal Winners for Grades 3-5

The link is to books set for Grades 3-5 but if you look around the site, it’s a chock-filled with good books.
It seemed to me that a lot of those classics are really sad (- anyone remember ‘Where the Red Fern Grows‘?!!!!), but at the same time, boy, they sure do stick with you. Rich stories.

Oyate Catalogue: fantastic catalogue for finding Native American stories for children (and adults)

Chinaberry Catalogue: beautiful books (and other stuff too) for the whole family. Real-book focused, I didn’t see any e-books there

A Read-Aloud Book Share: This is a link to a blog in which teachers linked to their favorite read-aloud books. There is not a huge selection represented, but I haven’t heard of some of the books, so I’m looking forward to checking them out

Summer Reading List for Children: developed by the American Library Association, these lists are divided into grade levels


…Now Tell Me, Please:

– what should be added to this list?


Another note on Kindles:

Like I said, this is a kindle heavy list. It needs to be since we will be traveling and there is no way we can bring all those paper books.

We also like the versatility of kindle: anytime, anywhere, even in the dark. We bought this one:
Kindle Fire HD 7″, HD Display, Wi-Fi, 8 GB – Includes Special Offers – it is a fire, which means full colour (- perfect for kids’ books). Let’s see. What else. Oh right – we also got these Moxie-Proof Cases for the kindles and also the screen protector

Groupon often has Kindles on sale. I bought ours with a Groupon from Kansas, I think (- just google “groupon kindle fire” – it doesn’t have to be with your local area). Amazon also has frequent sales – and Zulily also has them for sale from time to time. Check it out.

Kindle Unlimited: this is a fantastic-looking program of $9.99 a month for all the books you want. It’s like the netflix of books, basically. We haven’t done it yet because for a lot of these great books we’ve purchased, I want to own them; not just rent. But we will do be doing this when we hit the road and Mikey and I get back into Dean Kootz or whatever.

It’s all-in-all a good deal if you are committed to e-books and if you travel a lot. Another thing I like about the kindle? It downloads FAST with an option to download the book to the computer and to transfer from the computer to the device. This was very handy while we were in Mexico – or even here, on the Lost Coast, with super slow internet connection.



Speaking of Back to School:

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**This post contains affiliate links and I will be compensated if you make a purchase after clicking on my links.

There is nothing better than getting all of your back-to-school shopping done in one place…unless you can get it done AND paid for! Enter to win the zulily Back To School Giveway where both you and I can each win $500 in zulily credits! While you’re back-to-school shopping on zulily.com from 8/4 – 8/11, pick out your favorite item (apparel, shoes, accessories, gear and more) and post a link to that item in the comments section below. zulily will announce their winner on 8/12, and if we win, I’ll announce who my winner is on 8/13! Thanks zulily for making the task of back-to-school shopping fun! 

Chugging over here, clearing out, clearing, clearing out! NINE DAYS!

Mmkay, so. I was going to donate some of the few disability-related books I have but you know – a lot of people on this blog read this blog for the disability part. And are interested in learning more. So I’d like to just have a giveaway for them.

Us being on a super tight budget now means that if you are able to send a few bucks via PayPal for the shipping, that would be awesome – but not a deal breaker if you can’t.

Just tell me which book you’d like in the comments. If more than one person wants something, I’ll draw straws or something. I’m going to mail them out ASAP.


Here they are:
Survival Strategies for Going Abroad: A Guide for People with Disabilities : taken
No Pity : People with Disabilities Forging a New Civil Rights Movement – claimed but no address yet so if you want it there is still a chance!
The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of The Disability Rag.: taken
Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights: NOT TAKEN

download (2)

The Disability Rights Movement: From Charity to Confrontation: taken but no addresses yet… backups are welcome


A Wheelchair Rider’s Guide: San Francisco Bay and the Nearby Coast (A Coastal Conservancy Book) – NOT TAKEN


I’ve also got some other miscellaneous books which I’d be glad to give (but again, the postage thing.. PayPal would be awesome, it really adds up, doesn’t it?):

– Smart Women Finish Rich + Workbook (- never used at all *facepalm*)

– Crafty Mama (Makes 49 Fabulous Foolproof Projects…) – TAKEN

– Mixed Media Paintbox (Weekly Projects for a Year of Creative Exploration) – TAKEN

-Easy Slow Cooker Cookbook – TAKEN

That’s it for now – I will be adding to this list/putting up checkmarks or something if books are claimed. But let me know, okay? I’d rather this stuff goes to you.



Have you ever read Haruki Murakami? I became a fan of his while I was living in Tokyo – books like his A Wild Sheep Chase and Hard-Boiled Wonderland and the End of the World would simultaneously thrill and scare me. Imagine, reading all about subversive, quirky and mysterious plots involving a subterrainian Tokyo world… while you are riding on the subway in Tokyo. It was kind of weird and I kind of really liked it.

Early Tom Robbins reminds me of Murakami. Still Life with Woodpecker? To me, that’s pure Murakami, with a funny American twist. They have the same sort of surreal, twisted logic that makes you kind of look at everything and…wonder.

Well, and yes – I think I am going somewhere with this! – this baby-business of milk/pumping/nursing and whatnot puts me in this kind of Murakami space. Like I could be in my twenties, sitting and drunkenly talking about the “meaning of life” – only I’m not drunk, I’m not in a bar, I’m not in my twenties, and I’m not with anyone else (besides the baby, anyway). I’m just spending a whole lot of time alone and looking at a wall. I get into that world where Murakami and Robbins make a whole lot of sense.

Moving on, the object of my madness:

IMG_6851 Oh yeah, he’s  intensely cute. I don’t need to say anything so obvious as “it’s his saving grace” or “that’s just a baby’s survival tactic”


 “Evolutionary: survival of the fittest, and the it’s the cute that win.” Because everyone knows that stuff, right?

IMG_6862 This little guy though. Yeah. He’s cute. A soul that was born old.

IMG_6864He makes the world seem mad, crazy – and magical. All in one fell Murakami/Robbinsesque swoop


Maybe I’ll be back tomorrow with something else.

Or maybe I’m going to be off chasing sheep in Hokkaido.


So… if you don’t hear from me, you’ll know where to find me.


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Talking about “Top Books” is always a hard call for me. Remember, I’m the daughter of two people who, when they decided to move to the South Pacific, brought something in the area of 36 boxes of books… and two small suitcases for clothes. It’s harder still to choose books that truly help in understanding disability better.

The books I’m listing here are ones that personally helped me most in my learning and understanding disability – disability as a subject, as a matter of personal pride, as a movement, as an action and as an opportunity.

My Pick of Books to Help in Understanding Disability:

No Pity : People with Disabilities Forging a New Civil Rights Movement

This is really a must-read, I think. Powerful, engaging. Very well written, comprehensive. A basic primer for anyone who is an advocate – or interested.


The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of The Disability Rag.

An intense collection of stories, personal narrative that captures and conveys the experience of being a person with a disability in America today.

Two books go together here:

The New Disability History: American Perspectives (History of Disability)
Why I Burned My Book and Other Essays on Disability (American Subjects)

These books packed the same type of WALLOP for me that ‘No Pity” did – “The New Disability History” is also a comprehensive history of disability – cross disability. “Why I Burned My Book” talks of the search for heroes, public policy and more. Again, comprehensive. Far reaching. Essential reading for advocates, people with disabilities and those involved in the disability field.

Nothing About Us Without Us: Disability Oppression and Empowerment

This book pushes the reader to “recast many assumptions we might hold about disability in relation to human rights” (- Lennard Davis). It’s broad, comprehensive, and on the international disability rights movement.

Waist-High in the World: A Life Among the Nondisabled

A memoir from one of my favorite authors. One of the first books about being a parent with a disability that I read. Beautifully written. Poignant. Candid. Lovely.



Moving Violations: War Zones, Wheelchairs, and Declarations of Independence

Another memoir that I loved by an outspoken, well spoken smart and funny professional journalist who is a paraplegic.

Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights

“Everyone cares for disabled people, right? What they don’t care for are the genuine civil rights for disabled people…” (-William Greider). This book was an eye-opener for me in my early learning on what “disability rights” really means – and the complicated pieces that are involved.

Signs of Resistance: American Deaf Cultural History, 1900 to World War II (History of Disability)

I am deaf. I grew up mainstreamed. I can barely sign and I felt an intense shame for most of my life for the fact that I just can’t hear. It was exhilarating to chomp my teeth on deaf culture and history.

If You Could Hear What I See

A memoir from a Deaf comedienne. One of the first Deaf memoirs I read and enjoyed. On the lighter side.


The Diary of Frida Kahlo: An Intimate Self-Portrait

This is another memoir of sorts. I liked the punch it pulls in terms of moving through life with colour and beauty – despite what else might be happening.

That’s inspiring to me.


The Ugly Laws: Disability in Public (The History of Disability)

This feels particularly relevant in the here and now in which we are fighting for IHSS, for healthcare, struggling against some pretty basic disability discrimination.

The Disability Studies Reader

I like comprehensive – I’m sure you’ve noticed that already! This is another comprehensive book – it’s really a comprehensive overview for disability studies, “the collection covers cultural studies, identity politics, literary criticism, sociology, philosophy, anthropology, the visual arts, gender and race studies, as well as memoir, poetry, fiction, and prose non-fiction.”

There you have it. Those are my Top 13 .What are yours?


You might be wondering where the Down syndrome books are?

I don’t honestly think that they have a place here on this list, as they are written by parents of people with Down syndrome – they are stories of the parents coming to terms with disability and the place that Down syndrome holds in their world. They are for a specific slice of disability but not necessarily for disability or written from the perspective of one who has walked the walk.

None the less, the books that I truly loved are in the “Book Resources” section here on this blog.



You know it and I know it: Kelle Hampton is hugely popular. She writes marvelous fluff on her blog, Enjoying the Small Things. I think she is an adroit blogger, able to weave remarkable bits of fippery in and around drop-dead awesome photos. The result? A top-notch blog.


A top-notch and popular blogger does not, however, make for a good book author. In fact, I thought Bloom was one of the worst books I've ever read. The reviews said it was "raw and honest" and I thought that was just a new way of saying "really badly written." Moreover, Kelle Hampton has a pretty charmed life over there in Florida. The birth of her daughter with Down syndrome kicked her hard, but… her daughter had no health issues and Kelle had a ton of support – both items that most parents of children with Down syndrome can't relate all that well to.


Here, therefore, are my Top 5 Recommendations for books other than Bloom to read for the new parent, books that have much for new parents to relate to, and books that personally helped me a hell of a lot.


1. Expecting Adam, by Martha Beck

This one knocked my socks off.

One of my all time faves, ever, for any book category.

Martha Beck is hilarious with a deep, compelling story. She mixes the spiritual a lot within her memoir – but since I'm of the spiritual bent, it worked well for me.

Note: it's spiritual, not religious; Martha dropped out of the Mormon church quite a while before her son was conceived. She writes a lot about coming to terms with having a child with an intellectual disability (like me, she had a prenatal diagnosis and also like me, she considered abortion), but does so utilizing elegant prose, well crafted sentences, turns of phrase and liberal layers of humor and wit.

It's a well-crafted tome clearly written by a very intelligent, well educated woman.


I loved this book. I have re-read this book something like 3 times.


2. The Year My Son and I Were Born, by Kathryn Lynard Soper

Kathryn Lynard Soper is a practicing Mormon and went through a crisis of faith when she had her son prematurally, diagnosed at birth.

This book is raw, it is honest – and those are not euphemisms for "badly written"; because this story is skillfully told, unfolding with grace. I loved the said rawness and the honesty – about her struggle with faith, with her church. With finding herself and the love for her son despite his many medical issues, post-birth.

She writes of keeping her family whole, caring for her other (5 – or was it 6?) children while dealing with her son's issues, with her faith and with being completely overwhelmed.

Great book.


3. Gifts, edited by Kathryn Lynard Soper

It was actually when Kathryn was dealing with all of the issues described above that she saw the need for a compilation of stories by and for parents of kids with Down syndrome.

She collected those stories and edited them. The result – a must-read.

There is something in there for everyone, and it is tremendously comforting to know that no matter what you feel – you are not alone. There is a tribe for you to connect with.

There are people out there who understand.

Gifts 2 is also dynamite.


4. The Shape of the Eye, by George Estreich

George writes on par with Martha Beck – he's funny but make no mistake: this is not a light book. This is a book contains a plethora of sentences that are so richly strung, they make you stop and mull over them for minutes, days.

He's definitely for the analytical types out there, the type that enjoys tearing apart history, thinking of underlying meanings. His daughter also had some health issues, which he speaks of in addition to his own struggles with depression and having a bi-racial identity.

Beautifully written.


5. Roadmap to Holland, by Jennifer Graf Groneberg

I wasn't crazy about this book when I first read it, thinking she was just trying too hard, that her sentences weren't flowing the way I thought they should. But you know what?

Screw it.

A lot of people could relate to this story.

And maybe it is good that it's on the lighter side of writing, it's easy for anyone to read. The premature birth of her twin boys led to the surprise diagnosis of one of her boys. He had a number of health issues, which she grapples with along with trying to deal with having a child with Down syndrome – and the accompanying prejudices she encounters, her struggles through small town Montana life and a child with special needs.


6. A Good and Perfect Gift, by Amy Julia Becker

Yeah, I know, I said "5 Books", but I have to include this one too – so consider it a bonus!

Amy Julia wrote a book that many, many in the Down syndrome community can relate to as many, many in the Down syndrome community are Christian and Amy Julia comes from a very Christian place.

What I – non Christian that I am – liked was that Amy Julia is the type of hard-thinking, deeply-believing Christian that goes way past the superficial in her faith – down to the actual application of teachings of Christ.

She does a lot of that – faith analysis and application – in her book and frankly, I enjoyed it.


For more reviews, check out the T21 Writer's Alliance.

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