Monthly Archives: December 2014

Your Christmas (Book) Bonus: A Book-Driven Bonus Blog

Hello readers,

Back in 2011, I dedicated a post to my love of reading, and to the promotion of books whose protagonists had disabilities. In honor of this blog’s third year on the Web, I’ve decided to do it again.

I’m providing a list–by no means exhaustive–of some popular, and some lesser-known, books with protagonists who have disabilities. These disabilities can be anything–physical, mental, psychological, or some combination. The reading levels may vary, but I’ve tried to focus on middle grade and young adult literature for a few reasons. I’m passionate about these genres. I think the target audience for them is at a prime age to get some real education about persons with disabilities (as in more than, “Be nice to Petey; he can’t walk.”) I also feel this education doesn’t happen because these genres are sorely lacking in protagonists with disabilities. However, other reading levels are also represented.

Finally, I have decided to do something a bit different with this blog than I did in 2011. Along with conventional disabilities, I will also be representing eating disorders such as anorexia and bulimia, as well as obesity. As we’ve discussed, these are not classical disabilities. Yet they are just as misunderstood as classical disabilities, if not more so, and the people who experience them are just as marginalized and in need of a voice. Plus, eating disorders and obesity are in fact disabling conditions.

With that in mind, here’s the list:

Anything But Typical (Nora Baskin)–Jason Blake is the twelve-year-old protagonist of this middle grade novel. He has high-functioning autism and struggles to fit into his neurotypical (NT) world. He has a tremendous talent for reading and writing and loves creating stories on Storyboard, his favorite Internet writing group. Through Storyboard, he meets PhoenixBird, whose real name is Rebecca. They become good friends, but when Jason meets Rebecca, will she see him as a regular kid or only autistic?

Counting by 7s (Holly Goldberg Sloane)–Twelve-year-old Willow Chance loves nature, diagnosing medical conditions, and counting by sevens. She’s never been typical, but that’s never been a big deal. When her adoptive parents die in a car accident, Willow must make her way in a typical world, and does so with triumph.

A Mango-Shaped Space (Wendy Mass)–Mia sees letters and numbers in color, but only told her teachers once because they assumed she was being disruptive and sent her to the principal. But now, Mia’s condition is becoming a bigger part of her life. When she finds an Internet discussion group about synesthesia, the young teen has finally found like-minded individuals. Yet these new friendships may cost Mia more than she’s prepared to pay.

Stuck in Neutral (Terry Trueman)–Shawn McDaniel has cerebral palsy. He can’t talk or move one muscle, even his eyes. His older brother Paul doesn’t understand him and often feels angry, and his father believes Shawn is suffering and would rather be dead than live with CP. But Shawn has a great mind locked in his body, and perfect auditory memory. Find out what happens to Shawn in this book, sequel Life Happens Next, and Cruise Control, Trueman’s companion book about Paul McDaniel.

(W)hole and Breath(e) (Ruth Madison)–These books, aimed more at older young adults/adults, introduce us to Elizabeth, a young woman with a unique sexuality. She is attracted only to physically disabled men. When she meets Stewart Masterson, former champion surfer and “paraplegic of her dreams,” they embark on a relationship fraught with obstacles, including Stewart’s dark secrets and the disapproval of Elizabeth’s parents.

Life in the Fat Lane (Cherie Bennett)–Lara is the sixteen-year-old queen of her high school. She’s smart, pretty, popular, and 118 pounds. But suddenly, she starts gaining rate at an alarming rate until her size nearly doubles. She’s sent to the hospital and placed on a strict liquid diet, among other treatments. But nothing helps and her doctors and nutritionists can’t figure out why. This is Lara’s journey through her experience with a “less than perfect” body and what she gains from it.

One Fat Summer (Robert Lipstyle)–Robert “Bobby” Marks, unlike most seventh-graders, dreads summer. That’s when everybody abandons their coats and long sleeves and pants, and his overweight body is exposed. This summer though, Bobby has more obstacles than his weight, including a sadistic summer job boss, a bully, and a friend who may or may not become a girlfriend.

Wintergirls (Laurie Halse Anderson)–Lia and Cassia have been best friends for years, and also competed to see who could be thinnest. When Cassia’s eating disorder takes her life, Lia must rebuild hers and deal with the guilt of her friend’s death.

Girls Like Us (Gail Giles)–Sequencia (Quincy) and Biddy are two graduates of their high school’s special education program. No longer allowed to participate in school, they are placed in an apartment as roommates. Both girls have mental disabilities to some degree, and this causes hardship, particularly for Biddy. However, they navigate their new world with humor and honesty.

A Miracle of Hope (Ruth Reid)–This Christian-based Amish novel is for young adults and adults. When Lyndie Wyse gets pregnant outside wedlock, she must leave her community. Her only hope seems to be a marriage to Josiah Plank, resident of an isolated north Michigan Amish settlement. During her marriage of convenience, Lyndie also becomes caretaker for Josiah’s deaf daughter Hannah, whose giftedness leads her family to important truths.

A Woodland Miracle (Ruth Reid)–Coming January 2015, this is the next in the Amish Wonders series. Grace Wagler has struggled with her limp all her life, encountering unwanted pity and heartbreak from her childhood best friend. When she meets fun-loving, unconventional Amishman Ben Eicher, he tries to strike up a relationship with her, but Grace distrusts him. Through the course of the book, Ben must decide the kind of man he’s going to be, while Grace decides how to relate to him and how to best deal with her disability. Getting treatment could make her life easier, but the Amish way is to accept it as “God’s will.” Which choice is right for her, and for Ben?

Song of the Magdalene (Donna Jo Napoli)–May be better suited for adults. This novel tells the story of Miriam, a woman considered “unclean” in first-century Israel because of her seizures. Abraham, the son of Miriam’s caretaker Hannah, has a disability as well. In fact, he’s considered the “village idiot.” But together, they just might save themselves.

Cinder (Marissa Meyer)–First in the Lunar Chronicles series, this YA novel concerns Cinder, a cyborg with a missing arm and leg. Her stepmother treats her cruelly, and she’s blamed for her stepsister’s illness. But when Cinder gets a chance at love, she’s got to delve into the “cinders” of the past and present to secure her future.

Reaching for Sun (Tracie Vaughn Zimmer)–Teenage Josie Wyatt is different. Born with CP, she’s relegated to special ed and the “special” bus. Her Gram and mom are there for her, but life is far from perfect, until Josie meets a boy who can see her for who she is. As Josie grows, her family’s farm withers, but obstacles may provide needed growth for everyone around her.

Waiting for Normal (Leslie Connor)–Addie has dyslexia, but her bigger problem is her family life. Her mom can’t seem to find normal; for example, one day the pantry’s stocked, the next day, there’s not a crumb in the house. Addie must find her own brand of normalcy to guarantee she can have a life of her own.

Naked Without a Hat (Jeanne Willis)–In a twist on the old institutionalized-individual-breaks-free plot, nineteen-year-old Will wants to move into a group home. His mom constantly nags him to take off his lucky knit hat, his father forbids him to play guitar because he only knows one song, and he just lost his job at Burger King. When Will moves into a flat with three other individuals with different disabilities, his life takes a positive turn. But things really get positive–and sticky–when he meets gypsy girl Zara, who camps out in the park where Will works with her family. Will seeks a great relationship with Zara, but will his mom ruin everything?

Say What You Will (Cammie McGovern)–Compared to The Fault in Our Stars and Eleanor and Park, this book concerns Amy and Matthew. Amy has cerebral palsy and Matthew has severe OCD. When Amy decides to hire an aide for her next year of high school, she gets Matthew, and the two strike up a romance.

Fanny and Memily (Stephen Cosgrove)–These two early reader books are part of the Serendipity series. Their title characters have disabilities/perceived flaws. Fanny is a cat with three legs, and Memily is unusually tall even for a giraffe. They must learn “handicapped” is a state of mind, and differences can be great. Parents can also try Flutterby, a book from the same series about a winged horse who struggles to find “her own kind,” and Leo the Lop, about a flop-eared rabbit whose differences help him save the day.

I Can, Can You? (Marjorie W. Pitzer)–This picture book for kids up to 4 shows babies and toddlers with Down Syndrome doing all the things little kids the world over can do.

Susan Laughs (Jeanne Wilis, Tony Ross)–Told in rhyme, this picture book features Susan, who laughs, rides, swings, plays with her friends, and reads. Oh yeah, Susan also uses a wheelchair.

Goodbye Tchaikovsky (Michael Thal)–Twelve-year-old David Rothman is a violin virtuoso–until deafness strikes, on his birthday, no less. David must learn to navigate his new world and figure out his future, especially where the violin fits in.

Joey Pigza Swallowed the Key (Jack Gantos)–Life hasn’t been easy for grade-schooler Joey Pigza. As he puts it, “My dad ran off when I was in kindergarten and my mom went after him,” leaving him with his sometimes-abusive grandma. In addition to family issues, Joey also has to cope with undiagnosed ADHD and the stuff his impulses make him do, such as swallowing his house key and bouncing around the school hallways like a superball. A special ed placement, the reappearance of Mom, and other obstacles make Joey’s life even crazier, but he navigates it all with humor and aplomb. If you like this one, try other Joey books like Joey Pigza Loses Control and What Would Joey Do?

Tangerine (Edward Bloor)–Paul Fisher of Tangerine County, Florida is legally blind. He can’t see without extremely thick glasses. But he can see things others refuse to see, like the increasingly dangerous behavior of his brother, Eric. Paul gets help with this through his new friends on the soccer team, and also deals with obstacles such as a sinkhole trying to swallow his school.

The Oak Leaves (Maureen Lang)–This Christian-based novel ties together Regency England/Ireland with contemporary Chicago. Talia Ingram is intrigued when she finds her great-grandmother Cosima Escott’s journal, but struggles to balance her discovery with her worries about her son Ben, who’s not developing typically. When Talia and her husband Luke learn Ben has Fragile X Syndrome, which will leave him with cognitive disabilities for the rest of his life, they are devastated, until they discover a life-changing truth in Cosima’s journal about Cosima, her family, and her brother Roy, who also had Fragile X. Also read the sequel, On Sparrow Hill. Two of IndependenceChick’s personal faves!

Saving Amelie (Cathy Gohlke)–Suitable for adults and older teens due to thematic content, this book tells the story of Rachel Kramer, an American of German descent whose father is a eugenicist. When she and her father must return to Berlin for a biannual trip to a special clinic, Rachel learns she has been part of a deadly genetic experiment since she was a child. She also learns of Hitler’s drive to create a “master race,” and becomes involved in helping her long-lost twin, Leah, save a little girl named Amelie who is deaf and will be executed for her disability if the Nazis find her. Christian-based, but disturbing in places.

Just Another Girl (Melody Carlson)–Fourteen-year-old Aster has always been the caretaker for her younger sister Lily, who has severe cognitive disabilities. Her parents are busy, and her older sister Rose is extremely selfish. Aster tries not to resent Lily, but it’s tough, especially this summer. But her relationship with Lily may be about to change, and so is Lily’s life.

Losing It (Erin Fry)–Ben Robinson loves baseball, especially watching it on the couch with his dad while eating fattening foods. When Ben’s dad is taken to the hospital in a harrowing medical emergency, Ben is sent to live with his aunt, who makes it her mission to get him healthy. Ben will have to “step up to the plate” and take control of not only his weight, but also his life.

Purge (Sarah Darer Littman)–Janie Ryman hates bingeing and purging but can’t seem to stop. The doctors and psychiatrists at the Golden Slopes treatment center want to help, but Janie’s too busy navigating her new reality. She’s soon drawn into conflicts between the Barfers (bulimics) and Starvers (anorexics) on the ward, as well as the difficulty of her own self-rediscovery.

Small Steps (Louis Sachar)–In this companion book to Holes, Sachar lets us know how Stanley Yelnats’ camp-mate Theodore–er, excuse me, Armpit–is doing. It’s been two years since his release from Camp Green Lake, a corrupt youth detention camp, and everyone still expects the worst from him. Ginny, his neighbor, who has cerebral palsy, knows how that feels. Together, they must learn to take small steps toward freedom and their futures, even when old friends–or are they enemies–get in the way.

The Crazy Horse Electric Game (Chris Crutcher)–Willie is an amazing athlete, until a freak accident leaves him with a permanent physical disability. Now the cane he received to commemorate his triumph in the Crazy Horse Electric Game isn’t only an accessory–he has to use it. Willie eventually runs away and must fight to keep his body and life intact on the streets.

Moses Sees a Play (Isaac Millman)–This book is one in a series for young children about Moses, a boy who is deaf and attends a school for the deaf and hard-of-hearing. In this one, exactly as the title says, Moses goes to a play put on at the local deaf theater with his class. Includes basic sign language lessons for readers.

Wendy on Wheels (Angela Ruzicka)–These books for young readers star ten-year-old Wendy, who does everything TAB kids do from her wheelchair, such as going to the beach or the zoo and campaigning for accessibility in her town. Check out the author’s website at http://www.wendyonwheels.com.

Whew! That’s a lot of books, yes? But they’re all good ones, so curl up with one this holiday. Merry Christmas, Happy Hanukkah, and Happy Kwanzaa from the IndependenceChick blog!

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You’re Hired: The Benefits of Hiring PWDs–in All Fields

Hello, readers,

Yesterday, we talked about the fact that PWDs could use some real friendships for Christmas. We also examined what kind of interactions make up a real friendship. One such interaction was mentorship like the kind you see in the workplace. Yet, recent statistics show only 19% of people with disabilities regularly participate in the workforce. According to articles in business magazines such as Forbes, this is often because employers think PWDs are not cost-effective. To be blunt, they think PWDs are a drain on their money. Ebeneezer Scrooge much?

Seriously, people. I realize that businesses have to make money and in some cases, a temporarily able-bodied person is more qualified than a person with a disability. For example, I love medical shows and learning about medicine, but I am not a doctor and would not expect to be hired as one just because I have cerebral palsy if a TAB person were more qualified than I am (which bookoos of them are). But when businesses shut down the idea of hiring PWDs without any forethought or questions, everyone gets cheated. In addition, people like the spokespersons of organizations like Opportunity Works and EARN get stuck trying to explain the purpose of their companies. PWDs and their advocates end up essentially begging for space in the workforce. Come on, guys. The ADA has been in effect for twenty-five years. Get with the program.

Today, we’re going to look at some of the benefits of hiring PWDs, but with a couple of caveats:

1. We will not discuss tax breaks. Most business owners know about these, and they are useful, especially in this economy. But if the only reason you hire a PWD is for extra money, you need some additional perspective.

2. We will discuss the benefits of hiring persons with disabilities in all fields. The face of disability in the workforce has changed. Yes, some of us are perfectly content working in food service, laundry, or menial jobs, but a plethora of other options exist now. One of my goals is to show PWDs and their loved ones that attaining adult status does not automatically mean a permanent job at Chick-Fil-A or Burger King.

So, on we go to those benefits.

When you hire a PWD, you are hiring a problem-solver. Most of us, yours truly included, have spent our entire lives modifying the things TAB people take for granted. I’ll give a couple examples from my own life. I can’t tie shoes, so I have to wear, and search out, slip-on models. When I had to take geometry for college prep in high school, pictorially-based study methods did not work for me. I had to type out the facts and formulas in the book and study using words. Other PWDs come up with modifications like these all the time, and if we can’t, usually we just need a little help to get us going. When life presents you with a problem almost from birth, your critical thinking skills get an automatic boost.

So think about it. Maybe your business has always had content problems on its website. Your IT people are stumped–but then you hire a PWD who has a degree in public relations. Maybe he or she doesn’t know everything about computers, but maybe he or she looks at the problem and says, “Oh, I get it. Your website is too flashy, and you have big blocks of texts broken up by links that don’t work half the time.” That example is a bit simplified, but ones like it happen every day.

When you hire a PWD, you are hiring someone creative. Now of course, some people take that in a negative light. You know, like special ed teachers and vocational rehab coaches who say, “Oh yes, Cooper is very creative at getting his own way/getting out of work.” That may be true for a select few, just like it is for a few TAB people. But let’s look at creativity in a positive way. PWDs hear a lot about what they can’t do and will never do. As hurtful as this is, it can also help them hone their strengths more. So instead of having a team member who’s “good” at coming up with diplomatic solutions, maybe you end up with a great one. A person with dyslexia who’s also great at math might be the best accountant you’ve had in years.

When you hire a PWD, you are hiring a determined soul. I don’t mean this in the hokey, “Look, Julie finally walked two steps” sense. I mean it in the sense of, sometimes the best way to get results is to tell someone they can’t do something. I can tell you from personal experience, I will put all I have into proving you wrong. For example, maybe you thought your employee with a disability can’t keep up well enough to cut people’s hair in a salon. Maybe he or she does need to start off slow, with just a few appointments a week. But given time, patience, and true mentorship, who knows what could happen?

As for that thing about, “Yeah, they’re determined not to do things or to get their own way”–yeah, I’ll admit I’ve been there before. But think about it. If what someone else is asking you to do is harmful or feels unsafe, shouldn’t you be determined not to do it? If you’ve never been allowed to express your opinion, what’s the harm in insisting things go your way for once?

When you hire a PWD, you are hiring innovation. Yes, most of us need modifications. Yet contrary to popular belief, most of those modifications don’t cost a ton of money. For example, what if you had a great candidate who had sensory issues related to clothing? Would making a few dress code exceptions be such a big deal? And no, I don’t mean letting that person show up in spaghetti straps and Daisy Dukes, but really. Or let’s say you had a teaching candidate with a disability that required her to sit down a lot. What is the big deal about that? You might learn that candidate is a good employee, and he or she might inspire you to think beyond the usual.

When you hire a PWD, you are hiring humor. No, we’re not all joyous every minute of every day, but most of us have learned to see the humorous side of life. Yours truly can be quite snarky when she needs to (yeah, I know, major shock). And as long as it’s appropriate, every workplace needs humor, right? (Note: please don’t police us for social appropriateness every second).

Those are a few of the big benefits, but certainly, more exist. This holiday, consider giving a person with a disability a two-word gift: You’re hired!

Friend Like Me: Moving to the Next Level in Friendships with PWDs

Hello readers,

I’m trying to catch up with December posts, partially because December is this blog’s anniversary month. I thought about doing a post concerning all the things PWDs really want for Christmas, but we’ve talked about those things a lot. You know: respect, the chance at real jobs and real lives, services that actually serve individual needs, and so on. So naturally, I was stumped on what to write today until I remembered something else PWDs might want for the holidays: the chance to have real friends.

Again, we’ve talked about this some. The August 2013 archives contains a post on how relationships with PWDs can often go awry, especially among kids and teenagers, because of stereotypes and misunderstandings. But what we haven’t talked about, is how to move friendships to the next level for PWDs.

What do I mean by that? Well, I do believe that most PWDs have friends on one level or another. For some, these friends may be aides or helpers, as in, “Scott is my friend because he takes care of/helps me.” That is the lowest level, and the one we need to move beyond. It doesn’t require social interaction beyond a setup of “the helper and the helped,” which makes the PWD feel unequal to the able-bodied aide.

Society has gotten better at recognizing this setup as unequal, so they try to move to another level. Teachers, aides, parents, whoever–they want PWDs to experience real friendships. Good for them! But what normally happens is that the PWD is paired with only other individuals with disabilities and told, “These are your friends because you all have handicaps.” Or, they’re paired with able-bodied people who want to be friends, but are stuck on how to do so. The PWD then becomes, not a friend, but a “sometimes friend,” a “special buddy.” Some schools even have “buddy programs” that perpetuate this setup. Again, it’s not a bad setup in itself. It’s a good way to begin integration. But we don’t need to stop there. I don’t believe an able-bodied child, teen, or adult can claim to be friends with a PWD if the extent of their friendship is through a “program,” or a monthly date at McDonald’s.

So, what kind of friendships do PWDs actually want this holiday season? I’ll give you a few examples.

Mentorships. People with disabilities are being hired at “real jobs” more often, thanks to societal inclusion, websites like gettinghired.com, and general education on the part of the temporarily able-bodied. However, many of them are still often “placed” in jobs with “job coaches.” These people are not friends; they are individuals whose job it is to make sure the PWD behaves appropriately at work. Here’s a revolutionary idea: job coaches, quit coaching. Be a mentor instead. Employers, set up workers with disabilities with experienced mentors whose job it is to say, “This is the way we do things here,” but whose job it ALSO is to say, “If you have any questions, ask me. Wanna go out to lunch? What do you like to do after work? Hey, the guy in X department is kinda hot–want me to set you up?”

Standing get-togethers. Ditch the monthly McDonald’s date–it gets everybody in a rut. Make an effort to see your friends with disabilities at the same times, and at the same places, you see friends without disabilities. Suggest going to the movies, or the club, or shopping. Make the effort to find accessible venues, and go out with a mixed group of PWDs and temporarily able-bodied people.

Reciprocation. This is a biggie, especially during the holidays. People with disabilities often receive gifts from people who love them and want to show it. The problem is, PWDs often don’t have the means or opportunity to reciprocate. Some of us are luckier than others in that we can express this desire. For instance, I’ve had people take me out to lunch or for coffee and insist on paying, and I can say, “Please let me pay because when you don’t, it makes me feel like I can’t reciprocate.” But other PWDs don’t get to express this. Let them, and let them reciprocate. If you give a gift, accept whatever it is they give you in return, even if it’s not pricey or glamorous. Pay for lunches or coffees on a rotation if possible, or do activities that don’t cost money to take the pressure off.

Real conversation. Now, I understand this can be difficult to do if you’re a TAB person and your friend with a disability has the mental age of a five-year-old. But remember, chronological age first. If that person is really 16, talk to them like they’re 16. No, I don’t mean discuss your sex life or ask about subjects they’re unfamiliar with. I mean, treat their interests with respect. Ask what they want to know about your life. For example, just because you take calculus and they’re in special education math, it doesn’t mean they only know 2 + 2. Tell them interesting things about your teacher, or what calculus helps us do in real life. If you’re an adult whose friend has a disability, don’t spend your entire time together talking about disability issues (for example, I’m passionate about those, but do give me a break). Talk about regular stuff, because that person is a regular person.

The holidays aren’t nearly as meaningful without family and friends. So this year, give the gift of authentic friendship to PWDs. You may find you’ve accepted a new member into the family you’ve chosen for yourself.

Christmas Culture Clash: What Would Happen if We Treated Disability as a Culture?

Hello readers,

I am incredibly glad to be back. December got off to an extremely hectic start at work, with lots of assignments every day. I’ll have to do it again tomorrow, but I love my job and am glad to have a break to write to you today. I’ve been saving this post and the question that goes along with it: why don’t we treat disability as a culture?

I mean sure, in some respects, we already do. The Deaf community proudly says it has its own culture, and that community’s right. Deaf arts, deaf theater, deaf schools and sports–they’re all around us and that’s a great thing. There are also certain cultural “signals” and “customs” that we follow in terms of persons with disabilities. For example, it’s common courtesy to say “hello” and “goodbye”, or some equivalent, as you enter or leave a room if a person in it is blind. It’s considered rude to lean or hang on a wheelchair. Movies and TV are often now equipped with captions or visual descriptions, and it’s usually considered extremely rude to use the R word, though we’re not where I’d like to be with that issue.

Yet in so many ways, we still treat disability as if it’s abnormal and should be “fixed,” especially when it comes to cultural behavior. For instance:
-If a person with a physical disability requests an automatic door, we assume they’re lazy.
-If a person with Asperger’s Syndrome doesn’t understand a joke, we assume they’re standoffish or impolite.
-If a person with an intellectual disability is in his or her 20s and still enjoys toys and Disney, or still believes wholeheartedly in Santa, we think that’s weird (and really, why is that weird? We’d all do well to believe in the spirit of Santa, if not the actual fat guy in the red suit with a beard).

What if, instead, we accepted these differences as part of a culture, like we accept African-American, Hispanic, Jewish, or Buddhist culture? A culture that says:
-Not everybody uses the same entrances, but everybody deserves to come in
-In this culture, what is rude and what is polite may be in flux. Ask first.
-In this culture, we value Disney, Santa Claus, and “childish” things not because we are perpetual children, but because they help remind us and others to be warm, caring, optimistic–NICE.
-This culture may not accept various sensory experiences. Crying over a clothing tag may seem weird to you, but gosh, those things scratch! Not being toilet-trained at 10 years old may be pathetic to you, but in this culture, it’s accepted that the body may need a little help working. Yes, we recognize that urine and feces smell and feel gross, but we’d rather you accept them as part of what we live with. You know, kind of like we accept that the Third World may have different nutrition and monetary standards than us?

In case this example seems a bit fuzzy, let me do something else to clear it up. Recently, I watched the movie Elf, a modern Christmas classic made in 2003. Its protagonist is Buddy, an elf raised at the North Pole but adopted from Earth. He lives in elf culture, so when he goes to New York City to meet his dad, a culture clash of epic proportions ensues. Modern New Yorkers do not understand that in elf culture:
-Singing loudly at all times, even those that are considered “inappropriate,” is acceptable and encouraged
-A steady diet of sugar, candy canes, and maple syrup is a must
-People walk around in pointy caps, pointy shoes, and fur-lined coats like it’s no big deal
-Santa is DA MAN, and preparing for any of his visits is a BIG DEAL. It darn well better be the real Santa too, because they hate imposters in elf culture.
-It is every elf’s mission to make every day feel like Christmas.

Watching Buddy try to adapt to human culture gave me the idea for this post, but I also noticed something a little disturbing. Why was no one acknowledging his culture and helping him adjust? I mean, the poor guy gets muscled into a department store elf job without even knowing what a job is. People don’t tell him why he can’t do things, just that he can’t. This leaves Buddy confused and constantly feeling like everybody’s mad at him (which they are, but should they be? Probably not).

Sounds familiar, huh? How many PWDs out there feel like everyone is always mad at them, for breaking a rule they didn’t understand or making rules nobody else understands? It reminds me of Cynthia Lord’s book Rules (check it out on Amazon.com).

Now, I realize that sometimes, we have to integrate disability culture with temporarily able-bodied culture. For example, if you’re a parent and your child has Asperger’s Syndrome, you’ve probably had to explain that as much as he loves dinosaurs, people get bored if he discusses them all day. If you know someone with Down Syndrome, you may have had to explain that shouting out at a movie theater or doing some other “maladaptive” thing is not okay. We with cerebral palsy sometimes have to adapt to the fact that in able-bodied culture, we cannot skydive, and some areas are not as accessible as they should be. But that adaptation does not have to come with anger or frustration, and it doesn’t mean “assimilating” to make somebody else happy.

Instead of constantly expecting PWDs to adapt to them, what would happen if the able-bodied world adapted a little more to disability culture? Oh yeah, yeah, I hear you: “We have captions and Braille menus and automatic doors that cost a fortune! We’ve adapted enough!” Well, if that’s what you think, then you need to ask Santa for a new perspective, because the access we do have is not nearly as prevalent as we think, PWDs are bullied and discriminated against every day, and in most places, existing disability services could use some help or just plain stink. So let’s take a cue from Buddy the elf and learn some new cultural mores. Curl up and watch cartoons with a twenty-year-old if that’s what they do every day. Yes, tell your child with autism that it’s unhealthy to eat the same foods every day–but incorporate those favorite foods as much as possible. Be cognizant of what your loved one with a disability considers acceptable or unacceptable, and why, even if you think those standards are ridiculous. And make every day feel like Christmas–by accepting them. That’s a great gift.