Christmas Book Bonus Round 2

Hello readers,

You all must have been good this year, because you’re getting more book recommendations about strong, independent protagonists and people who aren’t often represented. This is partially because of the snowy conditions of the last post; we didn’t lose electricity but I kind of rushed it because I thought we might.

Also, I need to make a disclaimer for this and future lists: Some, perhaps many, of these books I have not read. But I still confidently recommend them because of who and what they represent. If I know of or suspect a problem like inspiration porn, I will make a note of that. And so, on we go:

Dear Martin (Nic Stone). This YA novel is gaining a lot of steam in the current climate, as it should. Jus recently experienced a scary discriminatory incident, and it’s making him question all he knows about what it means to be a black teen. He starts to notice more microagressions and wonder if he’ll ever be judged by anything other than skin color, or if people are lying when they claim they don’t judge him that way. What I love about the premise is that Jus deals with his feelings through letters written to Martin Luther King, Jr.

Dark Sons (Nikki Grimes). I read this in my brief teaching tenure in preparation to teach it to a class. It’s a modern take on the tale of Isaac and Ishmael. When Sam’s dad, a devout Christian, leaves and marries a white woman, Sam’s world is thrown into turmoil. When dad and stepmom have a baby together, that turmoil increases as Sam struggles with how or if to accept this child, who he is as a person, his racial identity, and many other layers of conflict. The actual story of Ishmael is interwoven, making for one of the most layered books I’ve encountered.

Counted with the Stars (Connilynn Cosette). This is one of my personal favorites; it takes a look at the Exodus story through the eyes of Kiya, an Egyptian slave. The catch is, Kiya used to be a pampered member of nobility. Double catch? She doesn’t believe in the Jews’ One God through most of the book. There are Judeo-Christian themes, but Connilynn is a great author for any audience. As a bonus, Kiya’s brother, a prominently featured character, is a three-dimensional person with a disability. (The book implies cerebral palsy, but naturally, it would not have been called such in that era). Great for teens and adults.

The Girl Who Drank the Moon (Kelly Barnhill). A middle grade novel, this one is also gaining serious steam; I see it in prominent bookstore spaces whenever I visit my local B&N. The book features Xan, a young girl who takes on the task of raising one of the babies sacrificed to a forest witch. As if that wasn’t hard enough, thirteen years later, Xan discovers her adopted daughter has magical powers. They came about because years ago, Xan accidentally fed baby Luna moonlight. And now, life is about to get a lot more complicated…

The Serafina Series (Robert Beatty). I’ve only read the first in this trilogy so far, but Serafina, the main character, definitely fits the parameters of this list. She was raised at the Biltmore Estate, but consigned to its basement so no one could see and be terrorized by her. Without giving too much away, Serafina is only half “normal person,” and she doesn’t know the other half of her heritage. Finding it helps her protect the estate and solve some intriguing mysteries.

The School for Good and Evil Series (Soman Chainani). As a huge fan of Once Upon a Time, these are on my To Be Read list even though they’re “for kids.” The series posits that every fairytale hero and villain you know went to school to become so. But what if one day, two students got switched? Sophie, who expects to be kidnapped, rescued, and trained/treated as a princess, is sent to the School for Evil. Meanwhile Agatha, who has all the characteristics of an ideal Evil student on the outside, is sent to the School for Good. Horrors! But maybe the best thing that could have happened to fairytale world…

Fish in a Tree (Lynda Mullay Hunt). Ally is illiterate, but nobody knows that. She’s been able to hide the truth for years. But her new teacher, Mr. Daniels, is a lot smarter and savvier than Ally bargained for. And Ally’s life, school and otherwise, is about to change.

Millicent Min, Girl Genius (Lisa Yee). Millicent Min may be a genius, but that label is not easy to carry, especially in the summer. This summer, she’s stuck tutoring Stanford Wong, and has just as many friends as ever – as in, none. When Millicent meets Emily, she seems to have found a true friend – but will Millicent have to lie to keep that friend? Check out Stanford Wong Flunks Big Time and So Totally Emily Ebers for books with the POVs of the other two main characters.

Mockingbird (Kathryn Erskine). This is another of those haven’t-read-yets, and I recommend it based mostly on its uniqueness, not because it necessarily handles disability well. Caitlin has Asperger’s, but her older brother was always there to help her navigate it – until he’s killed in a school shooting. Now Caitlin has two tough situations to navigate, plus people telling her she needs to “work on” herself and her Asperger’s, as if that’s supposed to help. (This is a great way to open the discussion of why PWDs are so often worked on, and have things done to them or for them, but are not worked with or asked for their thoughts/opinions).

Changes for Julie (Megan McDonald). Part of the Julie series in the American Girls Collection, this is the last book featuring Julie Albright, who grows up in 1974. It gets brownie points from me because it tackles both feminism and disability. Julie wants to run for class president, but she’ll be the first girl to do so, and against a popular male student. When she chooses her friend Joy Jenner for VP, everyone assumes Joy is a joke because she’s deaf. Julie tackles these issues without preaching or inspiration porn, and in my opinion, this book provides good discussion fodder for the beginnings of the disability rights movement. If you have a kid with a disability, especially a girl, you might talk about how it might feel to go to school with no modifications, to get in trouble because of a disability, etc.

The Unlikely Hero of Room 13B (Teresa Toten). Adam has OCD, but at least it’s not one of the “tough cases.” Robyn, a girl who he meets in his young adult support group, has OCD too – and her case is so tough she’s just been released from a residential program. Adam decides it’s his job to save Robyn – but who really needs rescuing here? One of the few books I’ve been able to find with a male PWD as the main character, and one I recommend for kids who like superheroes.

My Louisiana Sky (Kimberly Willis Holt). Also on my TBR pile, the heroine of this book is a TAB girl named Tiger Ann. The catch is, both Tiger’s parents have cognitive disabilities (I have *never* encountered that in a book before). Tiger Ann is embarrassed and ashamed of her parents, and thinks a summer with her aunt will provide needed escape. That is, until she learns some family secrets that could change everything.

Nothing’s Fair in Fifth Grade (Barthe deClemens). Elsie Edwards is fat – so fat she can’t see her shoes. She begs other people for their food at lunch because her mother puts her on a strict diet. She steals people’s lunch money to buy candy too, so when the book fair money goes missing, everybody assumes Elsie did it. But the truth may force the fifth grade to rethink how they see Elsie, and what “helping” her really means.

Heartsong (Kevin Crossley-Holland). Laura is an orphan, abandoned at a Viennese orphanage in infancy. Perhaps because of the abandonment, perhaps for medical reasons, Laura can’t speak. But then she meets a composer named Antonio Vivaldi, who unlocks her gift for music.

Matilda (Roald Dahl). Why this book never made any previous lists, don’t ask. I don’t know. Matilda Wormwood is the epitome of a strong and independent heroine, and while she doesn’t have a disability, her family and principal certainly treat her as though she is defective and second class. But Matilda is not about to take that lying down – she’s too smart for that. Even if you know this story inside out, grab a copy for the kid in your life.

The Popularity Secret (Cindy Savage). This one is out of print, but if you can find a copy, snap it up. Teenager Janet had a great life with her adoptive parents, but when they were killed in a car accident, she was consigned to the foster care system. Janet’s social worker promises the Kingsleys will be different – they never send anyone back, “no matter what.” And Bob and Sherry Kingsley do seem like warm and welcoming people, as do Janet’s new foster siblings. The problem is, all but one of Janet’s new brothers and sisters have disabilities, and the kids at school are pressuring Janet to take sides. They think because Janet is a “reg” (regular), she shouldn’t want anything to do with all the “crips” in school. But what are the popular kids gonna do when they find out about Janet living with the Kingsleys? This was one of my favorite books as a kid, and possibly the only one I’ve encountered that shows an ability-integrated school.

Okay – that’s plenty to think about, yes? Happy reading – and if anybody has any recommendations for the next list, feel free to write in!

 

 

 

 

 

 

 

 

 

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Your Christmas (Book) Bonus, and Happy Anniversary!

Hello, readers!

First, some housekeeping. You’ve probably noticed the Christmas theme on the blog; merry Christmas, Happy Hanukkah, and Happy Kwanzaa to all. 🙂 And, today is the anniversary of the IndependenceChick blog! If this blog were a person, she would be six today, in about the first grade and primed to learn everything about everything, as I hope we all are, about disability and other topics.

Speaking of topics, today’s is kind of a tradition around here. This is the post where I discuss books, especially those you might want to read in the coming year. Originally, these books were all by or about people or characters with disabilities, and many of them still are. Over the years though, I’ve expanded the list to include any plot, character, or situation that speaks to the desire and quest for independence, or deals with any sort of situation, disability, or illness that might significantly impact someone’s life.

As in past posts like this, many of the offerings you’ll see are middle grade and young adult, simply because that tends to be prime time for readers to begin analyzing literature, thinking about representation, identifying with characters, etc. But there will be offerings geared toward adults and younger kids as well. Also, note that some books can overlap; something marketed as young adult, for example, might have a growing adult audience, and older kids might glean something from books meant for little ones if they’re presented the right way by a parent, teacher, etc. So, here we go:

The War that Saved My Life and The War I Finally Won (Kimberly Brubaker Bradley). Ada has a club foot, and her abusive mother never lets her forget it. Thus, Ada lives an isolated life in 1940s London, until an evacuation order is handed down for the city’s children. When Ada is evacuated to a stranger’s home in the country, she isn’t sure she should trust her new guardian. Over time though, she learns not only to cope with her disability and the raging war around her, but to craft a life that, while informed by them, is not consumed by them. Note that the sequel is in hardback, so save a bit of extra money.

You’re Welcome, Universe (Whitney Gardner). When Julia sees a slur about her best friend written on her school’s wall, she covers it with beautiful graffiti. But graffiti is still considered vandalism, so Julia is yanked from Kingston School for the Deaf and forced into “mainstream” education in a nearby suburb. Once in a hearing school, Julia deals with the normal upheaval, but also continues her art. The art becomes a major plot point, as another graffiti artist seems to have beaten Julia to the punch and may want her off their turf.

Hello, Universe (Erin Entrada Kelly and Isabel Roxas). Pranks are common in middle and high school, but sometimes they lead to disaster. This is certainly the case for Virgil Salinas, who gets trapped at the bottom of a well when his classmate Chet’s prank goes way too far. Now it’s up to Virgil, Chet, Kaori, and Valencia to undo the damage and disturb their own personal universe. But what does a non-athlete in an athletic family have in common with a couple of girls – one a self-proclaimed psychic, one deaf – and the school bully who just wants all the “weird kids” to go away?

Restart (Gordon Korman). Chase sustains amnesia after hitting his head. When he wakes up in the hospital, he finds a lot of people are eager to tell him who Chase is, but they all have differing opinions of and attitudes toward him. Some are glad to see him again while others seem terrified of him. Another book with a great premise from the author of No More Dead Dogs, which inspired a post on this blog in May 2013.

Risking Exposure (Jeanne Moran). Hannah is the ideal example of an Aryan Jungmadel, at least until she contracts polio. While in the hospital, Hannah is asked to use her camera and photographic gifts to document the journeys of other kids in her ward. Little does she know her pictures are being used as hateful propaganda against people with disabilities and illnesses.

The Julian Chapter, Shingaling, and Pluto (R.J. Palacio). These are shorter stories, sometimes packaged in a set, that serve as sequels to the wildly popular Wonder, currently a motion picture. The first, written from the POV of Julian, lets us see why Auggie Pullman became the target of bullies. The second is from the POV of Auggie’s friend Summer, lending a feminine perspective. The third is a prequel, detailing Auggie’s life before the events of Wonder.

Short (Holly Goldberg Sloane). Another book starring a protagonist named Julia, this girl is an aspiring theater performer who is very short for her age (the word “dwarfism” is not used but heavily implied). Julia begins to craft her identity and a place for herself when she performs in a local production of The Wizard of Oz.

Orphan Island (Laurel Snyder). The kids living on Orphan Island have a perfect life, except for one day out of the year, The Changing. On this day, the oldest child on the island is taken away and replaced with a younger child. This is Jinny’s year to become the elder. The mysterious boat that takes children just left with her best friend, and now she’s responsible for the entire island and the kids. She also wonders, will she be ready for her Changing day? What happens to those other kids–where do they go? If you like this book, you may also like…

Miss Peregrine’s Home for Peculiar Children (Ransom Riggs). As the title implies, all the kids living at Miss Peregrine’s are, ahem, peculiar. Some have extraordinary abilities. Others have unusual features like wings. But they all fit in with each other and have formed a family. This particular saga is from the POV of Jacob, a new kid at Miss P’s who makes it his mission to uncover some well-hidden secrets. If you enjoy this first installment, there are two more, plus graphic novels.

Compulsion (Heidi Ayarbe). Jake is a champion soccer player. He can’t lose, and every university he knows about is trying to recruit him. What no one knows is that his luck comes from his compulsions and obsession with prime numbers. Jake believes that on the day of the soccer championship, everything will converge so that his strengths and weaknesses unite. His dad will stop considering him a freak, and his sister won’t have to make excuses for his rituals and compulsions. But what if Jake is wrong?

The Magdalen Girls (V.S. Alexander). For mature teens and adults only, this novel follows three Irish girls, Teagan, Lea, and Nora. Raised in the 1960s in strict Catholic homes, all three girls are sent to the notorious Magdalen Laundries when they are accused of sexual sin. What follows is a story of spiritual abuse, friendship, survival, and struggle for freedom, based on the existence of the real Magdalen Laundries.

Hannah’s Joy (Marta Perry). For preteens, teens and adults, this sweet romance follows Hannah, an Amish girl ready to fall in love. William, a man she’s known her whole life, would like to court her but doesn’t feel worthy because of his stutter. Hannah and William tackle obstacles other than his stutter to find love though, including the actions of William’s overbearing brother Isaac, who thinks he can control William because he is TAB.

Ugly (Robert Hoge). A memoir with a broad audience, this concerns a man born with twisted legs and a significant facial tumor. Despite several surgeries, kids and adults still thought of him as ugly. Robert tackles the usual stuff about overcoming limitations, but is also refreshingly honest about life in general.

Refugee (Alan Gratz). In the current political climate, you and your kids have probably read some refugee stories – but have you ever read a book that contains three stories from three separate eras? Well, now you can. Meet Josef, trying to escape pre-Holocaust Europe in the 1930s, Isabel, who flees 1960s Communist Cuba, and Mahmoud, a Syrian teen living in 2015. You wouldn’t think these stories would ever intersect, but they do well, thematically and otherwise.

Models Don’t Eat Chocolate Cookies (Erin Dionne). In a twist on the usual chubby-girl-gets-thin narrative, Celeste Harris is not grossly overweight, but nor is she thin enough to meet beautiful body standards – and she’s fine with that. As far as Celeste is concerned, she’s happy with her sweatpants and chocolate cookies. But then her aunt enters her in the Husky Peach Modeling Challenge, and Celeste can see only one way out. Then again, who says thin girls can’t be husky peaches, anyway?

Braced (Allison Gerber). Rachel Brooks has lived with scoliosis for years, but her last appointment ever with her scoliosis doctor is coming up. Once she’s over that hurdle, Rachel can truly enjoy her new school year. But then her doctor announces her spine’s curvature is worse, and that she’ll have to wear a back brace 23 hours a day. The brace is hard, painful, and threatens to change her life in intensely negative ways – unless Rachel can go beyond bracing herself to moving forward.

Forever, or a Long Time (Caela Carter). Flora and Julian have been in so many foster homes, they no longer believe they were born. Now they’ve been adopted, but their story begins just where most stories like it end. In order to believe in the future, Flora and Julian will have to discover the past – and in a twist, their adoptive mom is coming, too.

Midnight Without a Moon (Linda Williams Jackson). Rose Lee Carter can’t wait to move North from Mississippi, escaping sharecropping and segregation. But when tragedy strikes one town over, Rose Lee’s life is upended. The story of Emmett Till has everyone up in arms, and now Rose Lee must find her own kind of freedom.

The Adventurer’s Guide to Successful Escapes (Wade Albert White). Anne has lived her entire life in St. Lupin’s Institute for Perpetually Wicked and Hideous Children (yes, really). But on the day she plans to escape, a simple bid for freedom becomes an epic quest, which she undertakes with friends Hiro and Penelope.

The Perfect Score (Rob Bueya). Another great book from the author of the Mr. Terupt trilogy, this one concerns a diverse group of middle school boys and girls faced with difficult standardized testing that could change their lives forever – unless they do something about it. I particularly recommend this one if you liked Jordan Sonnenblick’s After Ever After.

Prisoner of Ice and Snow (Ruth Lauren). Valor just got sent to prison – on purpose. She plans to help her twin sister Sasha, who is serving a life sentence for a crime she did not commit, escape. But this is no ordinary realm, and if the twins aren’t careful, they’ll face a fate worse than jail.

Learning Outside the Lines (Jonathan Mooney). Recommended for teens and adults, especially those with college on the horizon, this book is written by two guys who graduated from an Ivy League school – with learning disabilities. Can’t happen? Yeah, that’s what everybody else said!

Sam’s Secret Island (Sean Adleman). Part of the Sam’s Top Secret Journal series, this book chronicles the summer vacation adventures of a girl named Sam, who discovers a secret island – and who happens to have Down Syndrome.

Dead Ends (Erin Jade Lange). Dane is a school bully, one suspension away from expulsion. Billy is a kid with Down Syndrome, consigned to a segregated special education program. What Billy wants more than anything in the world is not personal freedom, not to get out of special ed, not to be cured….but to find his missing dad. And believe it or not, Dane is just the guy to help him do it.

So Not Okay, You Can’t Sit With Us, and Sorry, Not Sorry (Nancy Rue). This middle-grade trilogy takes a look at school bullying from the POV of the bystander, the victim, and the bully. Has Christian undertones, but is good for a secular audience as well. One major adult character is a well-developed woman named Lydia, a school counselor with dwarfism.

Harry Potter and the Order of the Phoenix (J.K. Rowling). This particular installment speaks explicitly to independence themes, as Harry and friends have to uncover the truth about Voldemort while holding an underground revolution against sadistic Defense Against the Dark Arts teacher/Ministry of Magic stooge Delores Umbridge.

The Eagle Tree (Ned Hayes). March Wong loves trees. In fact, they’re kind of his obsession. So when he learns his favorite tree is going to be destroyed, he’ll do anything in his power to save it. But March is also risking losing the life he knows, because he is autistic, and if his mom lets him get hurt again, his dad will take him away from the Pacific Northwest, his mom, and his trees.

El Deafo (Cece Bell). Written with a bent toward younger kids, this is Cece Bell’s experience as a middle schooler with a “giant hearing aid”–written in graphic novel form.

Schooled (Gordon Korman). Yup, he made the list twice! Capricorn “Cap” Anderson knows everything there is to know about nature and dealing with a hippie mom. He can show you around a commune, but knows nothing about public school. So when he gets sent there…well, hang on for the ride, because Cap’s not the only one about to get schooled.

Me and Earl and the Dying Girl (Jesse Andrews). This novel features a protagonist with cancer but refreshingly does not focus on her or the usual cancer-centric inspirational stuff. It’s mostly about Greg, his friendship with Earl, the films they made together, and the “stupid book” he has to write after encountering Rachel, the titular dying girl.

American Girl: Gabriela (Teresa E. Harris). Younger girls will enjoy these books about Gabriela, a three-book series written especially for this year. Gabriela struggles with a stutter, but most of her life is taken up with going to her special school for the arts, choosing between poetry and dance, and other typical problems for a kid her age.

That’s all for now; we have major snow here, so I’m going to stop in case we lose electricity. But stay tuned!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Double Bonus: Yes, Disability Representation is a Big Deal

Hi, readers,

Well, this is a banner week here at the Nest! I don’t think I’ve ever done two bonus rounds before, so today you get your first double bonus. (I wish I had that little “congratulations” button from Facebook on here so the post would shoot up virtual confetti and balloons).

When I was in fifth grade, my little brother was in first and still young enough for PBS. I didn’t really mind watching PBS, as some shows were friendly toward older kids. One of the shows we watched together was Arthur. Twenty years after its debut in 1996, the show is still going strong. I no longer watch regularly, but being a fan of nostalgic stuff, I’ll stream a few episodes now and then. I also keep up with the new episodes.

One of the newest Arthur episodes, only available on YouTube in the U.S., is called The Princess Problem. In it, Arthur’s little sister D.W. is shocked to learn her big brother’s friend Lydia doesn’t like “all that princess stuff.” At first D.W. thinks it’s just because Lydia hasn’t experienced princess media, like her favorite movies about the Princess Platoon (think Disney princesses with much less variety). But Lydia explains to D.W. and D.W.’s friend Emily that she doesn’t like princesses because Lydia uses a wheelchair. She has never encountered a princess who uses a wheelchair, or is “blind, or deaf, or disabled in any way.”

I want to clarify that Lydia does not hate princesses. Nor does she ridicule others for liking them, or insist that all princesses have disabilities. She does, however, raise the valid and true to life point that there is no disability representation in the world of princesses. While we’re on the subject, there is little to no disability representation in a lot of media, especially stuff aimed at young children (unless the point is, “Be good to Eddie Lee; he has Down Syndrome.” Which, by the way, is the title of a real picture book – Be Good to Eddie Lee).

Thus, Arthur‘s episode The Princess Problem is a rare gem. Lydia helps D.W. think about princesses in a new way. She introduces her to a real Spanish princess by the name of Dona Ana, who was half blind because she lost her eye in a swordfight (hello! If you’ve gotta have a disability-inducing injury, I say do it in early centuries while performing a traditionally non-feminine feat). Lydia also helps D.W. realize that princesses don’t have to be “perfect,” providing a great contrast to her little friend Emily, who says Dona Ana, Lydia, etc. can never be real princesses because wheelchairs are not “princess-y.” Bravo to the writers, producers, etc. for penning this episode.

I commented on the You Tube video specifically to say this, and I got some positive feedback. But I was inspired to write the post when I saw that somebody made the comment: “muh, my disability victim complex, f— off.”

Seriously?

And yet, yes. That is what a lot of people think. They assume that all people with disabilities have victim complexes, and that’s the only reason we want representation. Well, I’m not gonna stoop to your level buddy, but here’s some news. Everyone deserves representation. Everyone deserves to feel they matter in the world. Now yes, fictional characters, dolls, what have you – they’re not real. But when you don’t see fictional representations of people like you, you start to feel alone. I’d argue this is especially true for PWDs because they are either segregated or have not met people whose experiences are close to theirs. They either live in a “disability bubble,” or they don’t see other PWDs at all.

I’ve experienced a little bit of both, but mostly the latter. If I encountered another PWD at all, their disabilities were entirely different from mine and markedly more severe. Intended or not, the message was, “Because you have CP, this is what people think of when they think of you. You are on a par with this person.” (Which I am in terms of humanity and equality, but not in terms of needing or not needing certain mods, services, what have you). And yes, I never played with a doll “like me.” During my childhood, I owned hundreds of books. Out of those, one – that’s singular, people – had a protagonist with cerebral palsy. I never encountered a protagonist with a disability in English class, and any PWDs in books I read on my own were usually severely affected. I really started to feel, “Gee. I really am the only one.”

Now, despite what we say about making people feel unique – and despite the jokes we make about “special snowflakes” – nobody likes to feel as though they’re the only one. I don’t think we were made to feel that way. Otherwise, God would’ve stopped at Adam (and as we women know, wouldn’t that have been a disaster – just as it would if He stopped with Eve). So don’t fear, PWDs in the audience. When you ask for and seek representation – and even when you ask, “Why am I not represented? It’s not fair!” Well, you’re right. You’re not being a victim. You’re not asking for special treatment. You’re asking for a level playing field, human dignity, and the same chance to be represented that every minority and majority group gets.

Will representation ever be perfect? No. In fact, people who try to represent all the groups all the time usually try too hard and end up looking phony. But as The Princess Problem shows, we can do a heck of a lot better than we’re doing. A few tips/thoughts on how to improve:

-One is not enough. What I usually see in terms of disability representation is one person out of 6-7, with one disability type, who gets the spotlight once or twice (think Very Special Episode). Now again, not every character needs a disability, but I don’t think we should stop at one person or one type. Arthur has done a great job of this in recent years. We have Lydia, who uses a wheelchair, but we also have Carl, who has Asperger’s, and Marina, who’s blind. We have George, who has dyslexia. Main character Buster has asthma, which is not a disability but counts as a health issue.

-It’s not always about disability. Sure, use the plot where the PWD has to tell people, “Back off, I’m not broken.” But let’s face it, that plot gets stale. So does the plot that goes, “I’ll show them I can participate” and the one that goes, “Gee, I wish I were more like my TAB friends.” Try something else. Have the character swing a sword. Have them run away from home. Let them find and maintain first love. Let them be the catalyst for the big family secret. You get the drift.

-CHARACTER DEVELOPMENT. I know I yelled that. Sorry. But I really can’t emphasize it enough. Stay away from Blind Billy and Demetria with Down Syndrome. Give them hobbies, likes and dislikes, and real dreams. Let them be sassy and snarky. I’m not personally into it, but let them curse, drink, or smoke if you want to. Again, not personally into it outside the bonds of wedlock, but let PWDs talk about their sex lives. In other words, treat them like red-blooded, breathing, functioning people. The Good Doctor has a few good examples of this.

-If the work is religious, proceed with caution. Preaching to myself here, because I write Christian fiction. If there’s one thing a Christian writer, director, etc. loves to capitalize on, it’s a PWD – or animal with a disability, sometimes. We’re lousy with inspiration porn. I would advise staying away from these topics and plotlines altogether, but some of us are in fact called to use our creative gifts for God (whoever that is to you). If that’s you, be careful. Let your characters with disabilities be Christians, not saints. Let them talk about things other than Jesus. Let them have gifts other than seeing Jesus and Mary in chocolate chess pie.

-Let characters with disabilities do real things, minus the sentimentality. In other words, it’s not amazing that a CWD wins a spelling bee if she already loves words. It’s not inspirational for a CWD to drive a car if the car has adaptive equipment (although his search for the car could be part of a story if done carefully; see above). Also, let CWDs make mistakes. Let them fight with their friends, skip class, fail papers, get drunk, you name it. As long as they’re not totally evil people, which is in itself another stereotype, it’s fine. The key is to balance the good and the bad.

There is a slogan in the disability rights movement that goes, “Nothing about us without us.” I say that extends to the fictional and real worlds. It reminds me of the phrase, “No taxation without representation.” As in, “No decisions, no judgments, no anything, without representation.”

Who’s ready to represent?

Blog Bonus: Modifying Does Not Mean Giving Up

Hello again, readers! It’s been a while since you got a true bonus, so welcome to the bonus round!

I got the idea for this bonus from a late Thanksgiving Dear Prudence column. A woman wrote in about her nephews, ages thirteen and four, both on the autism spectrum. The nephews were the children of the letter writer’s sister. According to the writer, the thirteen-year-old nephew does well with social interactions such as Thanksgiving get-togethers, but his little brother does not. The writer explained that last year, the four-year-old had a meltdown, ended up biting people, and nearly broke a glass-topped table.

This is where it gets interesting. The letter writer said her sister “refuses to make modifications” for her two sons, out of fear that they will be negatively singled out. The letter writer wrote that when she suggests modifications, her sister hears, “Your kids will never be the same as other kids/I can see their future and it’s grim.” The letter writer’s question? How could she graciously suggest modifications to Thanksgiving/Christmas get-togethers this year for the younger son, without alienating her sister?

Good question, letter writer, and one that brings up a topic we should cover on this blog. Some loved ones of people with disabilities do feel that modifications equal “giving up.” They fear that if they don’t do something the typical, temporarily-able-bodied way, their loved one will not have a normal life, or his or her quality of life will diminish. I admit, I’ve felt this way too about certain things. Sometimes I get so sick of having to modify this, accommodate that, omit this, tweak that – that I think, Why bother? I can’t do things the way other people can, so why am I even here?

First of all, that’s not the attitude PWDs should have about life. If they do, then their loved ones and friends need to do their best to counteract it. It does happen though, often because PWDs are inundated with modifications and accommodations. Before we go any further, I need to caution: unless a modification is needed or asked for, don’t force it on someone. But, just because modifications are necessary does not mean you have given up on your loved one with a disability.

Okay, you say, I buy that – but when do I know if modifications are needed? What kind, how many, and how much? Well, those answers will depend upon the person, but there are some guidelines to keep in mind. Modifications are needed if:

-The typical way of doing things causes the person to hurt themselves or someone else. This is the bite-people-and-break-the-glass-table scenario. Now, I’d like to point out, those actions do not mean the four-year-old boy in the letter should be excluded and segregated. They don’t mean he’s like that all the time, and can’t have a normal life. What they do mean is that for the boy, family gatherings are too stressful to take in large doses. It is easier, more compassionate, and more sensible to modify the event (NOT lower expectations) rather than let someone get hurt.

So what does that look like in real life? Well, Prudence had some great suggestions, such as giving the boy a quiet “sensory room” to escape to, or letting him use fidget toys/comfort objects/whatever is needed. Other mods might be, finding a more accessible spot to get a Christmas tree rather than hiking up a mountain. Tweaking the holiday dinner menu to include gluten or casein free options (which, by the way, is a modern trend, disability or not). Letting some members of the family play the traditional Thanksgiving football game, but suggesting word or board games for your loved ones with physical challenges.

-The person is too young to do certain things, or functions at a cognitive level where it takes longer for him or her to process expectations. Remember, if the second half of this scenario is true, respond to chronological age. In other words, don’t usher your forty-something uncle into the den to watch cartoons or play Mario just because he doesn’t process political discussions right away. (Actually, here’s some etiquette for all ability levels: please, oh please, keep politics and religion away from the table). However, do take cognitive and chronological age into consideration. If you wouldn’t expect a ten-year-old TAB child to sit through a family bridge game, don’t expect it of a ten-year-old with autism. Talk directly to your loved one with a cognitive disability, about things that interest them. Make your expectations clear, but give them time to process and ask questions. If you allow yourself or your children to leave the table after a certain point, do the same for a child or adult with a disability.

-The person’s disability precludes liking or participating in a certain activity at all. Remember that thing about not forcing mashed potatoes and turkey on a kid with a sensory processing disorder? Yeah, this is where that category comes in. In the same way, if a person with CP, MS, or paralysis can’t or doesn’t want to play cornhole, don’t try to modify it unless they ask. If they say, “No thanks, there’s something good on TV,” then that’s fine. They are not being rude. They are not being antisocial or “hibernating” (that’s what my dad used to call it when I’d slipped away because I’d had all I could take of the crowd).

-The person asks for modifications. This is the biggie. I can’t emphasize this enough. Listen. If you’re asked to make modifications, do so as best you can, instead of assuming the above is true (it might be, but might not be). For instance, I love to play Scattegories. But since I can’t write legibly, I usually team up with someone who takes dictation, or type my answers.

Finally, it bears repeating: Modifications, or even declining to participate, does not mean your quality of life is diminished or that you will have a bad future. Some loved ones may need gentle, but firm reassurance of that, like the sister in Prudence’s letter. Do your best to provide it. And if someone does make a remark like, “If you keep doing that, he’ll never be like other kids”? Well in that case, you are within your rights to say, “That’s not your call to make. We choose to do X and Y so the holiday can be better for everyone, especially our kid. I need you to respect that choice.”

For some people, the holidays may need a little tweaking. In my experience though, tweaking and modifications actually level the playing field. They allow everyone to participate more effectively – and isn’t that what this time of year is about?

So Easy, Yet So Difficult: Why Independence Remains Out of Reach for People with Mild Disabilities

Hello readers,

I hope everyone enjoyed Thanksgiving and has sufficiently awoken from their turkey comas. Now we prepare for Christmas, Hanukkah, Kwanzaa, and more. In fact, as I write this, I am sitting in the shadow of our biggest evergreen yet, enjoying the spicy-sweet pine aroma.

Do any of you still make Christmas lists for your families? I do, mostly because I always want books and my family can never remember what I do and don’t have. Adult Christmas lists are also useful because the older you get, the more people have to guess at what you want. Specific requests or ideas eliminate some of the guesswork and pressure. What I’ve found though, is that the older you get, the shorter your Christmas list gets, and the more the things you long for become intangible.

I wonder what would happen if our Christmas lists were honest. If a woman struggling with infertility could write, “I only want a baby.” If a father living in a developing country could see the chance at a real future for his kids under the tree on Christmas morning. If a college student struggling to craft his or her own identity could unwrap the answers, or if an elderly person could unwrap a new memory, a new body, a second chance.

I know what I’d write if mine were honest. I know I’m capable of living an independent life, and I want a chance to have it. I want a community that understands and embraces me. I want someone I can call at four in the morning, someone to hold me while we watch Christmas movies by the fire, someone to say, “I love you, Mommy.” I want my parents to grow older without worrying about what happens to me when they’re gone, friends to invite me places as one of the gang (not their “sometimes buddy,”) and a chance to make a difference in the world beyond just being disabled. I want my niece to have a cool aunt she can visit, not a spinster aunt who lives in her house at poverty level because there are few or no other choices.

Impossible, yes? Unless you’re God, yeah. I don’t think Santa can fit independence in his sleigh.

It occurs to me though: I’m not the only one with this struggle. This paradox has mystified me for years – let’s say decades. Even though I hate functioning labels, I am a “high-functioning” person. There are millions of people out there who have disabilities but who can “function” well in the TAB world. They can speak and act at an expected age level. They can take care of themselves with far fewer supports than many counterparts need. They can work, not just at any job, but at skilled jobs – jobs for which you have to go to school, get specific training, and work your way up to earn seniority. They can sustain relationships and families.

And yet.

And yet statistically, PWDs whose manifestations are mild, or who have things like Asperger’s, mosaic Down Syndrome, what have you, are the least independent of the disability community. They are the ones most likely to live with parents or guardians, not independently or semi-independently. They are the ones who struggle to find and keep work not because they are incapable, but because they do not need or qualify for “supported employment,” sheltered workshops, etc. I’m just speaking from my own experience, but PWDs with mild or “high-functioning” manifestations don’t seem as likely to maintain relationships. A lot of us have friendships, but they may or may not be deep and lasting.

PWDs with these types of experiences also don’t have the support their counterparts may get. In my search online for “cerebral palsy support groups,” I have only found groups geared toward parents raising children with CP. (There is some support for parents raising adult children, but from my research, it seems the non-disability world still believes the rest of us are born kids and remain kids). Statistically, millions of these PWDs deal with depression, anxiety, and even mental illness and suicidal ideation/behavior.

Why? I mean, what the heck is going on here? Not to disparage people with more severe manifestations, but: PWDs with mild disabilities should be leading the charge. They should be mentoring. They should be showing the way and telling others, “I have the life I want/need and you can have it, too!” They should be making disability a more visible and vocal minority. And when I say “they,” what I mean is the woman in the mirror. Again, not that other PWDs can’t do this, because they do. Every single day they do, and I say rock on. But no one group can do it all, and we’ve got a serious lack of support and community for high-functioning PWDs.

I’ve asked myself why. I’ve cried. I’ve begged. I’ve thrown up my hands and said, “God/Jesus, if you cared at all, you’d fix this!” I’ve asked myself how to change it, how to fix it, because God and Jesus are not Santa Claus, and maybe He wants me to fix it. But I can’t fix it anymore than I can transport myself to Narnia, Hogwarts, or Storybrooke and live there.

All I can do at this point is come up with a few reasons why this may be happening, like:

-People do not expect disability to = capable. I’m not that person who says all people without disabilities are ableist, because they’re not. But overall, I still get surprise and amazement when people find out I can walk, speak clearly, and have multiple college degrees. I also still get side-eye when I ask for help with stuff like cutting food, changing lightbulbs, making the bed, cooking, etc. In most people’s minds, you either can or you can’t. There is no in-between. So therefore:

-Most services are aimed at the people who look like they “can’t.” Again, I say “look like” because everybody can do something well. People with Down Syndrome aren’t perpetual children; people with muscular dystrophy are not breakable. But the more visible the disability is, the easier it is to find services that fit your needs. Again, this is not a bad thing. And again, I know the downside to this; the more visible your disability is, the more underestimated and coddled you feel. That sucks. I don’t know which is worse. But–trust me on this–there are few to no services for PWDs like me. I have looked.

-People just don’t know what to do or how to act. I get this a lot as a PWD with highly intellectual interests. One of those is intimidating. Put together? Most people treat me like a unicorn – as in, nice to look at. Amazing to say you’ve interacted with. But as a person to take shopping? To go out to eat with? To kiss? To – dare I say it – wed and bed? Nope.

-Believe it or not, high-functioning disabilities seem to scare people more than their visible counterparts. As in, yeah, I can go shopping with friends, but they’re always worried about whether I’ll get turned around or lost (mostly because they’ve been warned about that kind of thing, which is another issue).

-This may be the biggest reason of all, and the one I’ve found most frustrating: PWDs like myself are somewhat chameleon-ish. That is, sometimes I want to hang out with other people who have disabilities, but mostly I don’t. Why? Not because I don’t like them or think I’m better than they are. It’s mostly because the other PWDs I know, 98% of the time, are severely affected intellectually and emotionally. As a kid, I was often sent out to do “modified PE” with classmates who were in full-time special education. They could not hold a linear conversation. They saw me as another person with “problems” to try to care for and help (I once had one of those classmates scold me for eating a Mexican pizza with my hands, which–how else do you eat it)? If I’m going to build real relationships, ones that fulfill me, they are probably going to be with a lot of TAB people. But well, see above. And it’s hard when your TAB friends are talking about work and you have to say, “Um, I’m still looking.” When they talk about their kids and you say, “Um, don’t have any.” When they all want to go clubbing or skeet shooting or whatever and then they all go, “Ooooooohhhhhhh….”

So as always, now that we know why a problem exists, what should we do about it? Of course, the first answer is to be more aware and understanding, but that’s not a tangible solution. I personally would like to see more communities for people with mild or high-functioning disabilities. For instance, instead of a group home, how about a sorority-like living arrangement where women with disabilities have the support they need, but are still allowed to go to parties, on dates, and stay up giggling until the wee hours about how good X actor looks without his shirt? Instead of a trip on the community transportation bus to do one outing a week, how about teaching PWDs to use Uber, or getting it in your community? Instead of disabled-only dating sites, how about if men and women asked each other, “Are you more of a concert person or a paintball person? I know this great accessible club/coffee shop/restaurant, wanna go?” Instead of Voc. Rehab, how about setting up mentoring programs at work – for anybody, regardless of ability level – and using them? Instead of stopping SSI payments the minute somebody makes a dollar over the cutoff, how about, “Those are yours because you still fall under the disability definition, but how can we help you save up for the things you want or need?” Instead of assuming PWDs can’t pay a mortgage or taxes, how about teaching them what that is? Instead of sterilization or loneliness, how about, “Want me to come in and help with the kid? We all need babysitters – what if one parent a week hosts playgroup, and we all come?”

You might not find independence under the tree this year. But eventually, what I hope we will find is a sense of community and inclusion, not just for people who obviously need it but for everyone else, too.

 

Give Thanks for Everyone or, No Mistakes

Hello readers,

I hesitate to write posts like these because I’m always afraid they’ll be seen as “downers.” But one, they’re not meant as such, and two, sometimes you write something because it calls to be written.

Thanksgiving is tomorrow – or today, if you’re on the other side of the International Date Line. Thanksgiving kicks off the holiday season (unless you started on Halloween, or are like me and sneaked and played Christmas music in August). It truly is the most wonderful, joyous time of the year–mostly. For people with disabilities, illnesses, what have you, and their families, it can also be extremely hard.

The Mighty recently posted some thoughts on the holidays from parents of children with disabilities. Out of personal conviction, I won’t call them “special needs kids” or “special needs parents.” Their thoughts are sometimes lighthearted and often serious. They include:

-My son will eat a hot dog. And that’s okay.

-We may be late. We may not make it. Please understand.

-When my kid is ready to go, we go. Period. We appreciate your respect.

-Please do not push my child to try the mashed potatoes again (personal note: or any other new or hated food). Last time, that resulted in vomit on the table.

-Do not criticize me or my kid. If you are not in his/her life daily, you have no right to say anything.

-If my child spills food, accidentally touches you, etc., it is not misbehavior.

-Understand that for my child, acknowledging you is like giving a bear hug. He/she is not being rude or disrespectful. He/she is doing what they can do.

-We were in the hospital last year. Please don’t ask me questions about my child’s condition that I need a crystal ball to answer. Please just let us visit. We need to talk about other things.

-Understand that we are thinking this may be the last holiday we have with our child, so no, we don’t care if everything is perfect.

 

So I’m reading this stuff, and I’m empathizing. If I haven’t been through it or felt it myself, I could still relate to it on some level. I found other gems that I could personally relate to like, “Yes, my child can sit at the table, use her utensils, eat, give the blessing. Allow her to participate. Talk to her.” And then I came across this:

-Include my child. Do not sit him down in front of a television to watch cartoons while everyone happily ignores him. Don’t exclude him because his disability, feeding tube, or ventilator makes you uncomfortable (paraphrase).

And I thought, how sad. How sad and angry-making that anyone would have to say this, because of families who actually, actively ignore children or adults with disabilities and illnesses at the holiday table. Is it willful prejudice? No, not always–maybe not even usually. But ignorance hurts just as much as prejudice. It reinforces the idea that the PWD is an aberration, a mistake, someone born or created without a true reason.

And you don’t have to ignore a PWD or plunk them in front of cartoons to make them feel that way. My family has never done that to me (although I confess that, ASAP after the meal, I make a gracious exit to recharge my introvert batteries). Still, I often feel like an anomaly around them, and others. It’s not easy to know where you fit when you have CP, but are also highly intellectual. When you hate the Thanksgiving side dishes and don’t even have sensory reasons as an excuse. When you wonder, for another year, why there isn’t a significant other next to you at the table.

Holiday time, more than maybe any other time, can make a PWD like me feel like an aberration. I think about what I’d like the holidays to be, to look like, and know I don’t fit in. I think, “Another year, and I’m no closer to independence. I’m no closer to being who and what I know I can be.” I have no logical reason to feel like this, but it’s been a real struggle lately. I don’t know why I’m here or if anything is gonna get any better. I’ll make a Christmas list for my family this year, but they can’t give me what I really need.

Only God can do that, and I’ll be up front with you there. God, my belief system, hasn’t been much of a comfort lately. I’m guessing some PWDs feel the same way this time of year. You know, like, “God does miracles and you’re our miracle, so you’re okay.” No, sometimes I’m not okay.

But I still know the truth. Sometimes you speak the truth over your emotions’ cries. Sometimes you speak it out of sheer determination not to give up. So here’s today’s truth. Whether you are a Judeo-Christian or not.

People with disabilities are purposeful. They were born and/or created for reasons. Exposing the reasons–that’s partially God’s responsibility. But if the TAB world doesn’t help them, they’re the ones who made the mistakes. PWDs are loved. They are needed. They are multifaceted reasons they’re here. They deserve to experience the holidays and be happy in them.

Let’s give thanks for everyone this holiday season, including our loved ones with disabilities. Yes, thank God or the universe for your miracle. Thank Him that your child is well, or can do things he or she couldn’t last year, or last month, or yesterday. Thank Him for the inspiration, the happiness, the love. But above all, use your loved one’s name. Show gratefulness for the name, the unique traits, the reasons they are here.

Can PWDs be “The Experts?” How to Make that Happen–and What to Do When it Does

Happy November, readers!

Today I had yet another Vocational Rehabilitation meeting, to introduce myself to yet another new counselor. She’s the fifth or sixth counselor my area has seen in not quite as many years. In most cases, the post in my town is a stopover until the person gets something bigger or better, like in the city. So I was kind of dreading the whole thing, as in, “Here we go. Another meeting, another new counselor, another occasion where I have to explain for the 7,948,353rd time what I do and do not need from employers.”

But I got a pleasant surprise today. It turns out the new counselor has cerebral palsy, too.

Of course, her manifestation isn’t exactly like mine. As I have said before, no two people with CP or any other disability are ever exactly alike. But it was wonderful to commiserate on a new level with someone who has dealt with and overcome the same stereotypes, stigma, and misconceptions that I have. It was wonderful to see someone in the “expert” position who truly knows what her clients are experiencing. It is my hope that this will help her to think more outside the box than any of my previous counselors have.

Now as we know, a person does not have to have a disability themselves to want to, or be able to, help people with disabilities. Furthermore, to assume PWDs can only benefit from each other is an ableist construct. It occurs to me, though: not enough persons with disabilities are the experts. They’ve been told all their lives what to do, when and how to do it, and by what time they should master it, courtesy of “experts.” They aren’t treated like the experts of their own lives. More importantly, I rarely see a person with a disability who is an expert in a workplace field of any kind, especially those that are not disability-related.

Think about it. When was the last time you saw a person with a disability in any kind of management or leadership position? If you did, was that person working with people of different ability levels, like my new counselor–or was he or she relegated only to a certain group of people? When was the last time a PWD supervised you in your job, or you answered to him or her in any context? When was the last time a PWD’s opinion was sought above all others? When was that opinion listened to?

My guess is “rarely” or “never,” because PWDs are often not afforded seniority and privileges in their jobs. Like temporarily able-bodied people, PWDs have the right to these things, but they often do not happen. That can occur for many reasons. For instance, a lot of people with disabilities, yours truly included, have to “job hop” to find environments that work for them. But every time we enter a new environment, we have to start over. Sometimes PWDs get downsized or worse, unjustly fired. When that happens, it is often assumed that they shouldn’t get privileges in the next job, if there is one. Sometimes, PWDs don’t get seniority and privileges because it is simply assumed, “They can’t handle that” or “They’ll mess it up.” Ableism alert!

These constructs not only make it harder for PWDs to become respected experts in their fields, but to gain confidence in their positions. It also makes it more difficult for PWDs who are not experts, to believe they could become so. For instance, I admit doing a double take when I walked into my counselor’s office this morning and saw a walker against a wall. Because I didn’t want to assume she had a disability, I said nothing, but as we talked, it became clear she did. Let me repeat: I had never met a person with a disability in her position before. And God help me, if I had, I might have had the tiniest moment of doubt that that person could help me. I work every day to excise doubts like that, but they still exist, especially in people who do nothing to acknowledge, let alone excise, them.

It comes down to a few key things, readers. I won’t spend a lot of time here because we’ve already discussed some of these concepts, but let me sum up:

-People with disabilities can become the experts in their fields. This should always be allowed and encouraged.

-People with disabilities are not experts only on their disabilities, but never forget: When dealing with a disability of any kind, the first person you should speak to, is the person who lives with it every day.

-We still live in an ableist society, where even PWDs do double takes when they see their fellow people in management, supervisory, or expert positions. Frankly, should I ever get that far, I would not be surprised or offended if somebody walked or rolled up to me and did a double take, too. But we must work together to get past the double takes. Seeing a PWD behind the desk or running the show should be as commonplace as seeing a black, Asian, or Hispanic person.

-People with disabilities must keep asking, and demanding if necessary, seniority and privileges (NOT begging and groveling. You do not have to grovel; we are past the era of the tin cup). You can’t become an expert unless you’re allowed to move up, and if you’re not moving, you need to ask why. Sometimes it’s a matter of having the right mentor and doing the right things. Sometimes your supervisor may invent excuses, either because that person is an ableist or a flake, or because outside circumstances are adverse. (For instance, my last supervisor never let me move from junior to senior level, or to higher pay grades, but that was because our clients kept changing the expectations and rules every five minutes). Do you want or need a raise? A chance at more challenging opportunities? Say it! If you’ve worked hard and done what is expected of you, and shown aptitude, this should not be a problem. If it is, you may be dealing with discrimination, and it is your right to confront that issue.

So, what if you are a person with a disability who is an expert in his or her field? Congratulations! Keep these things in mind:

-You earned it. You didn’t get here because you’re an inspiration, to meet a quota, or to make somebody feel good (and if you find out you did, that counts as positive discrimination).

-Treat your colleagues, especially those underneath you, as you want to be treated.

-Mentor others where and when you can; show new people the ropes where and when you can.

-Remember that in some situations, you are the “they.” In other words, if you’re the head of the university disability services department, you’re the one students are talking about when they say, “They won’t help me. They don’t listen. They don’t have what I need.” I understand that sometimes, hands are tied. Any system, governmental, academic, or what have you, is going to have problems because humans run the system. But never–I repeat, NEVER–become a faceless “they.” Instead, convey the attitude of, “I understand–on a deeper level than most–that this is frustrating. We’re going to try A, B, and C, and if that doesn’t work, we’ll try D.”

-Remember that no two people, TAB or with disabilities, are the same. Serve the person before the disability, the skin color, the religion, what have you.

People with disabilities have “experts” telling and showing them what to do all the time, but we have a dearth of PWDs who actually are the experts. So my challenge to you is, go forth, work hard at what you do, nurture your passions, and rise. Say to yourself, “I can be an expert!”