Part of the Community, Not “Community Service”

Hello readers,

Community service is on my mind today. My pastor just started a sermon series on spiritual gifts and how to use them, which I am excited about. He sent the church the link to a spiritual gifts inventory, so now I know my top three gifts and am looking forward to using them. In case you’re curious, those gifts are mercy, discernment, and knowledge. If you’re a Bible reader or just want to know more, check out 1 Corinthians 12, Romans 12, and 1 Peter 4 for what those words/gifts mean in a Christian context.

Community service, using your gifts, loving your neighbor – those are all wonderful things. As to the loving your neighbor thing, the Bible even commands it, so even if I didn’t want to, I couldn’t get away with *not* doing it. (And trust me, I’ve got some “neighbors” I don’t like – you know what I’m talking about. The kind of people who drive you nuts with their apocalyptic theories, swear you’re crazy because you prefer cats over dogs, and leave their Christmas lights up until March 31). But there are some hazards to this community/spiritual service thing, and I bet you know what one such hazard is.

Yup, you’re right. I’m talking about when temporarily able-bodied people use people with disabilities as a way to “punch their cards,” so to speak. This is not the same thing as the caregiver or therapist who thinks they’re a hero for doing their job. It’s not the same as inspiration porn. However, it’s in the same neighborhood.

This phenomenon occurs when TAB people see people with disabilities primarily as “other,” or a marginalized group. They may or may not feel pity for PWDs, but they tend to see them as innocent, wounded, and in need of help or care, more than as actual people. When this happens, you might hear a TAB person say stuff like, “Oh, this is a fundraiser for The Disabled. We need to help and be compassionate toward The Disabled. My son Ben has a Friend With Special Needs, and I am so proud of Ben for extending the hand of friendship.”

Now, is it good for Ben to extend the hand of friendship? Yes. Is it good that TAB people want to help people with disabilities? Yes – mostly. The problem comes in when the person with the disability is treated like a project. I have read true stories about parents whose kids come over to play with classmates who have disabilities – as part of a community service or “kindness” project. Parents once ran a story from a mom who was flabbergasted when a fellow parent asked if her son could spend time with her son, who has a disability. Why? Not just for fun, not as a playdate…but because the TAB kid was about to undergo his bar mitzvah, and spending time with a PWD would be seen as a mitzvah, or good deed. Basically, the kid and his mom were looking for class credit.

It doesn’t even have to be that blatant, although mostly it is and it drives me up the wall. (*Healing breath* Love thy neighbor, love thy neighbor…) Sometimes this phenomenon happens because people really do want to help PWDs be part of the community, but their messages are mixed. A prime example is Night to Shine, a prom for “people with special needs” put on by the Tim Tebow Foundation. Does the foundation have good intentions? Yes, but they are still holding a segregated prom and asking for donations/assistance in the name of charity. (We’ll be talking more about this next month, especially since my own church is going to be an event location).

I cannot stress this enough: Spending time with, or even acting friendly toward, a PWD should not qualify as community service. Doing so does not make you a saint or a hero, and it does not mean you are using God-given gifts to the best of your ability. In fact, the idea that it does, smacks of ableism. Why? Because it keeps the line between “disabled” and “non-disabled” separate. It reinforces the idea that there is an “us” and “them.” In this case, PWDs are the “them.” They are people to be pitied, people who won’t have friends or experiences unless someone who is able (unlike “them”) steps up and helps out. This is not true, and the people who believe it is true should not get credit for it, no matter how benevolent their intentions.

I hear you. You might say, “Chick, you don’t get it. My loved one with a disability needs a night to shine and a prom of their own. I don’t care if my kid with a disability gets played with in the name of community service, just so long as he has a friend. You’re just saying this because you’re mildly disabled and offended.” Well, I understand you, but I disagree. First off, if you think I’m only saying this because I’m “mildly” affected, that’s pretty much the same as saying, “You’re not disabled enough to know what you’re talking about.” Trust me, I am. Mild, moderate, severe…I know people with all degrees of disabilities, and their loved ones, who would prefer not to be treated as community service credit.

As to what your loved one needs and how you obtain it – okay, I get it. But I ask you to think about this: if the only way your loved one is getting what they need, is through segregated interaction or someone else’s need to serve the community – is that fair to your loved one? What message are you sending? Because the message I often hear in situations like this is, “Unless someone else is serving/being charitable, they have no reason or desire to be around you.” That’s a dangerous message hiding behind noble intentions, folks. It’s sneakier than a snake in the grass, and it will come back to bite you.

So what should we do instead? Should we throw all charities and programs/events aimed at PWDs under the bus? No, but I think we should examine our intentions, the way we talk about what we’re doing, and the options we’re presenting. For instance:

-Don’t couch an event as for The Disabled. In fact, don’t even say “The Disabled.” That’s like saying “the Jews” or “the Muslims,” and lumping a whole population into one group. Now, sometimes that can be used as more a collective noun (“The Jews in our inter-faith organization believe this, the Christians believe that, and the Muslims believe that.”) But I think we can all sense it when somebody says The Disabled. They’re painting that group as the group of poor wounded lambs, the one you don’t want to be in. Stop it.

-If you are a teacher, pastor, imam, rabbi…DO NOT give credit for “being friends” with a PWD. Don’t couch it as a good deed, mitzvah, or activity that people should do to appease God, exercise their gifts of mercy, or otherwise help “those people over there.” You probably don’t mean to do that, but if you’re doing it, rethink why. Is it because you don’t have many PWDs in your classroom, congregation, or whatever? Is it because you don’t know how to integrate? Is it because you’ve never spent adequate time with a PWD – as a person and a friend? Then maybe this is the year to change that.

-If your congregation has a disability ministry, don’t paint it as especially heroic, or “messy” or “untidy.” Even PWDs paint these ministries that way. Joni Eareckson-Tada, who herself lives with quadriplegia, has called disability ministries messy and untidy. Does she mean it in a bad way? No; I think what she means is, “People don’t want to get involved in this ministry because they think it’s hard or messy or whatever.” But guess what? When you use those words, or when you dump praise on TAB people just for “ministering to” people with disabilities, you make us all look pathetic. Please, please don’t do it. (More on this little pitfall in a future post).

-Erase the line. Night to Shine, Best Buddies, college programs specifically for “special needs students”…they are well-intentioned. But too often, they reinforce the mentality “us” and “them.” Erase that line. If your college has such a program, go out of your way to mix up the groups. Get to know those students as real friends, and invite them out to go clubbing or to the movies (what? You think a lady with a disability doesn’t want a nice guy to buy her a Shirley Temple at the bar? Okay, I’m a teetotaler, but Baptist habits die hard). 🙂 If your rec center, church, or organization is having Night to Shine, that’s great. But while you’re at it, make clear that students with disabilities at your school are welcome at your prom (WITHOUT expecting a newspaper write-up for inviting them).

-Invite and encourage PWDs to serve. PWDs have gifts and skills, too – skills that need to be used. We are not perpetually needy, but we need to feel needed. Help a person with a disability in your church take a gifts inventory. Ask them what service projects interest them and then say, “Great! Can I pick you up at X time, Y location? We could sure use your help.”

Serving people with disabilities is part of what communities should do, but it should not be a charitable service. Instead, people with disabilities should be allowed to be part of the community they serve, first and foremost. Who knows? Maybe you’ll find you need to be served more than they do – and some day, they may need to be served, too. It’s all about an equal playing field and paying it forward to each other, so let’s do it.

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Let Us Seize the Day

Happy New Year, readers!

I hope everyone had a joyous holiday season and, in the case of the Catholic and Orthodox Churches, looks forward to Epiphany and Orthodox Christmas with great anticipation. (I do, even as a Protestant, since Orthodox Christmas happens to be my birthday).

The new year is exciting, isn’t it? We don’t know what will come, but we hope whatever it is will be good. A lot of us make resolutions, although many of these end up broken sooner rather than later. I used to make New Year’s goals, but those never seemed to work out, either. Still, the New Year is a great time to seize the day, get started on some new things, and anticipate the next phase of life. Yes, even if, and perhaps especially when, you have a disability.

Many people with disabilities, myself included, are curious and confused about how to do this. We’ve talked about some of the reasons before, such as, PWDs have goals placed on them. They don’t make their own goals and if they try, their efforts are pooh-poohed. They’re told they can’t change and never will, or that they can’t change their environment or trajectory, so be content (which usually is a nicer way to say shut up). Sometimes PWDs don’t know what they want a new day or new year to look like. Speaking from experience, sometimes PWDs only know they want things to be different. But since they cannot express what that means to them, or do not yet know, they’re accused of being dissatisfied and negative.

I say that’s a bunch of crap, but you guys knew that already. So the question is, how does a person with a disability seize the day? I’m still learning, but here are a few nuggets I’m going to do my best to live by in 2018.

-Forget the year. The year as a whole is huge. It’s 365 whole days, 52 weeks, 525,600 minutes (thank you, Rent). And in that time, we all, disability or not, will set objectives for ourselves. Some will work out beautifully and some will not. Some we’ll get a roaring start on, and some we have to wait to begin, so by the time April or June or October rolls around, we might just say “forget it.”

People with disabilities face the same pitfalls, but from experience, they face others, too. One of the big ones, again, is that the people in their lives place goals on them. Not just goals, but REALLY BIG goals. As in, “This year, you will learn to do X, Y, and Z, and you will do it all by April.” As in, “By the end of the school year, Ronnie will read at an appropriate grade level” – even though for a variety of reasons, he’s only halfway there. (And halfway there is not a bad thing)! Because of this mindset, and sometimes because of their own drives, PWDs also set really big goals for themselves (ahem, yours truly). We say things like, “This year I’m gonna get my dream job” or “This year, I will finally move out of my parents’ home/the group home/Section 8 housing.” And then when it doesn’t happen, we brand ourselves failures.

What is up with that? I mean, I know what’s up with that. As a driven woman, I’m as guilty as anybody. When someone tells me, “Take it one day at a time,” I’m inclined to tell them to get out of the slow lane and burn rubber or get left behind. But the truth is, we all have to take it one day at a time. I’m not speaking specifically to persons with disabilities, but I am speaking to you, your loved ones, and your caregivers. Forget that 2018 will end in, what is it now, 362 days? Tell the person who wants you to learn everything by April to shove off – even if that person is you.

Seizing the day means just that: One. Day. One single day. What can you do today, to make the day feel new and promising? Got something in mind? Okay, go do it. Reading at grade level starts with a book of your choice. Brushing your teeth starts with getting the paste on the brush.

-Ask, “What is important to me right now, today?” Of course, moving into housing of your choice is important; in a lot of cases, it’s vital. But since that may not happen today, what is important today? Maybe it’s something as simple as, “I will find something to be happy about, or a way to help out, in the house where I am now.” Over time, these little steps can become bigger ones with the help of those who love or promise to support you (and if you aren’t getting what you need, what’s important today may entail saying, “I am telling you – not asking, telling you – to do your job.”)

The same goes for smaller ambitions (I don’t want to call them goals because that connotes IEPs, IFSPs, and all those other annoying Ps). In other words, yes. It may be important to a teacher, therapist, or doctor that Gerard, who has CP, learns to tie his shoes now. Why? Because “He’s eight years old; other kids already know how.” Well, to be blunt, so what? Is tying his shoes going to help Gerard get a job someday? Is it going to help him prepare to go to sleepaway camp when he turns 10 and becomes eligible? Is it going to make him happy – not just happy that he can tie his shoes, but happy in the long run? Yes, Gerard should learn to tie his shoes, as naturally as possible. But maybe what’s important to him right now is learning to communicate beyond a picture board, or learning to operate a DVD player or stereo. That way, he can specifically say something like, “I want the red shoes, not the blue ones” or “I want to watch Home Alone, not The Lion King. Come on people, I’ve seen that a million times.” In fact, Gerard and his team might find that stuff is a lot more important than shoe-tying. Hello, they have these things called loafers now.

-Allow mistakes. This is exactly what it sounds like. I’m not going to talk a lot about this one because it’s the hardest thing in the world for me to do, and I don’t want to sound hypocritical (I’m still working on it, folks). But mistakes are not the end of the world. Setbacks teach us things we need to know. So allow them. And experts, teachers, members of the Plan team, I’m talking to you: A mistake or setback does not mean “give up.” It does not mean a PWD will “never” do something. All it means is, you now know one way that doesn’t work.

-Define yourself, not just your goals. The thing about New Year’s resolutions is, they often point out what we’re not doing that we should be doing. This isn’t always a bad thing, but it can be pretty negative. For example, when we say, “I’m going to lose weight,” we generally mean, “I feel fat.” If we say, “I’m going to de-clutter my life,” what we mean is, “I’m messy/I’m a pack rat.” When we say, “I’m going to spend more time with my kids” we mean, “I’m working too much and missing out.”

Are these things true? Sure, but I’m not sure we’re speaking to ourselves the right way. The same goes for people with disabilities, perhaps especially people with disabilities. They are defined, much of the time, by what they can’t do and/or have not done yet. Thus, they (and when I say they, I mean myself, too) learn to see themselves through a disability-exclusive lens.

I recently had this conversation with a friend I met at a Christian conference. She posted something about not letting Satan’s lies infiltrate your mind and get you down, which I basically agreed with. But I had to ask her, “E, what happens when the lies are somewhat rooted in truth? As in, okay, obviously, ‘You have CP so you’re less’ is a lie. That’s Satan talking. But ‘You have trouble finding a job because you have CP’ is not a lie. ‘You’re not doing what other women in their thirties do because you have CP’ is not a lie. What do I do then?”

Well thankfully, E did not fall back on pat answers. She actually said something I found helpful, and I think would be helpful to all PWDs, no matter their spirituality. She basically recommended defining myself outside CP. You might say, “Duh,” but this is actually a lot harder than it looks, even for people like me with mild manifestations. It’s kind of a catch-22. The milder your disability is, the more you can see and respond to what TAB peers are doing that you feel you should be doing. But the more severe it is, the more other people try to speak for, over, and around you, telling you what you are not, never will be, can’t do, won’t do. It’s enough to make a person want to jump off a freaking roof.

Defining yourself outside disability is hard. In some cases and on some days, it may be the hardest thing you ever do. But the more you do it, the truer it becomes. So seize the day with affirmations. Say to yourself, “I am a ___ and this is my day.” I am a writer. I am a bookworm. I am a lover of fantasy. I am a restaurateur. I am a son, a daughter, a cousin, a sibling, a spouse. I am a Christian, Muslim, Jew, Buddhist, Sikh. I am American. I am Chinese. I am Irish. I am Mongolian or Russian or Nigerian or Israeli. I *have* this thing, but it is not who I *am*. And because of who I am, not what I have, I can be and do what I am meant to be and do.

-Get others behind you. Just as you must define yourself, others must define you in terms of who you are, not what you have or even what you do or don’t do (you walk and talk, but don’t cut your food. Who the heck cares)? Hopefully, you already have those people in your life. If not, speak up in any way you can. Let them know what you need.

-Don’t place expectations on yourself you can’t meet. In New Years past, I always wrote that by the end of the year, I’d have a significant other. Well, I can get a subscription to eHarmony or Christian Mingle – which I have – but guess what? I don’t control that. I don’t control whether a guy puts me in the friend zone and you know what? I don’t need to. I shouldn’t have to. The same goes for getting X job by May 25, or weighing a specific 127.7 pounds, or becoming an expert horseback rider, which may take a long time if you’ve only ever been in equine therapy. (It’s great to want to make that step, by the way, but…) Rest in the fact that you can’t, don’t, and shouldn’t have to control everything, despite the fact that for some reason, “disability experts” think, “If he/she just tried harder…” Baloney. Some things happen when they’re supposed to. Some things are completely up to God, Fate, whatever. As annoying as that can be sometimes, there is freedom there. Let yourself have it.

-Know that something is possible today. Just because you’re not an expert rider now doesn’t mean, skip your lesson today. Just because you haven’t moved out of your folks’ house doesn’t mean you never will. Just because you haven’t gotten the grade you wanted in that class yet doesn’t mean it’s impossible. Something is possible today. Do whatever that something is. Is it asking the teacher for extra help? Is it asking Mom and Dad to make you a hope chest so you can fill it with household items for someday? Is it putting on that one tricky sweater you’ve avoided because despite the tag, the front and back look alike? (That was a personal obstacle when I was a kid, by the way). Then do it! And if it doesn’t turn out like you planned, so what? Tomorrow is another day! Seize it. Experience it. Enjoy it. As for goals, they’ll come when they come. But this is your day, not theirs. Take it.

 

 

Christmas Quickie: Is Elsa on the Spectrum?

Hello, readers,

As Christmas approaches, my mind is on all things whimsical, and what could be more whimsical than Disney? I felt this would be an appropriate Christmas quick post, since Frozen is currently considered a Christmas film (not sure if it actually is, but whatever).

Now, we’ve already discussed the dearth of Disney princesses with disabilities, what representation would or should look like, and all that fun stuff. I’m not here to reopen that discussion, but to examine whether one princess has stronger ties to the disability community, specifically the autism community, than we first thought in 2013.

There is no definitive proof Elsa is or isn’t on the spectrum; nobody at Disney or otherwise affiliated has confirmed she is. If she’s not, or if you conclude she’s not, that’s fine. This is just a theory, and I am well aware that every fan theory has its detractors and supporters. I’m a proponent of some and think others are silly, insulting, or downright repugnant (like the one that says Belle had Stockholm Syndrome and spent the entirety of Beauty and the Beast committing bestiality, or the ones that claim sexual subliminal messages are everywhere). But if you have always wondered if Elsa is autistic, or if anybody at Disney ever confirms she is…well, I wouldn’t be too surprised.

Evidence of Elsa’s Presence on the Spectrum

Before writing this post, I wanted to investigate whether anyone else had the same thoughts I did. It turns out there are others who support this theory and have written about Elsa as a role model or character with whom to identify for autistic children. There are several pieces of evidence to suggest this, some of which come from my research and some I put together myself.

-High anxiety. Columnist Helen Tager-Flusberg of spectrumnews.org brings up this point as her first piece of evidence. Elsa consistently distances herself from other people, even her parents and little sister. This isn’t because she lacks empathy or the desire to socialize. Rather, it’s because Elsa recognizes her ice powers set her apart, and often in a negative way. She has seen them wreak destruction; in fact, the powers could have killed Anna when the girls were little, and they do again a decade or so later. Thus, Elsa internalizes, “To get close to someone is to hurt them.” As an adult, she remains extremely proper, genial, and poised (we’ll get to that in a minute). But as Anna says, Elsa shuts out the world at large.

Anxiety, even high degrees of it, doesn’t mean someone is on the spectrum. However, people who do have autism, especially women, experience this level of social anxiety all the time. They want to socialize, make friends, and have fun. They want to participate – a lot of people with autism ache to participate. But for so many reasons, they struggle to do so or have internalized that they can’t. Maybe that’s because they’ve seen the effects of meltdowns on other people. Maybe it’s because they’ve been told over and over, “You’re autistic, which is different, which is bad.” Maybe it’s because the rigid social scripts they try to use (often to please therapists, teachers, and other experts), don’t work. Whatever the reasons, anxiety, social and otherwise, characterizes Elsa’s life and the lives of people on the spectrum.

-Meltdowns/loss of control under pressure. Tager-Flusberg compares Elsa’s uncontrolled ice powers to autism-driven meltdowns. I don’t think they’re accurate representations of meltdowns for every person, but Tager-Flusberg raises a good point. When Elsa controls her ice powers, they create beautiful structures. She can use them to protect herself and others from real danger. She can use them to bring joy to others (see Arendelle’s new skating rink at the end of Frozen).

Yet often, Elsa cannot and does not exhibit this control. She has never been taught how to manage her powers, and so she fears them. Out of that fear and inner frustration, she reacts before thinking. Huge, threatening ice shards shoot from her palms, surrounding her and the people she loves. The icy structures she creates become barriers and sources of danger. When this happens, Elsa also vents her feelings with exclamations like, “I can’t control the curse! You’re making it worse! I don’t want to hurt you!” And isn’t that the heart cry of so many people with disabilities, but especially those with autism? Yes, we know our disabilities might hurt people, or inconvenience them, or cause undue stress. But like Elsa, we don’t want to hurt anyone, and when the TAB world insists otherwise, it just makes it harder for us to maintain composure. To put it more succinctly: Elsa was called a monster in her world. If you call a PWD, with autism or anything else, a monster, that is what they will become. You may not use that word, but trust me, we’ve used words that are a lot worse. The best thing we all can do for PWDs, especially those on the spectrum, is teach them how to manage what they live with so it can be used positively. And when meltdowns do happen, because they will, then we can take a cue from Anna. Just be there for the person. Understand. Offer help, and keep offering until the person can accept.

-Frequent “masking” of symptoms/hard to pin down autistic traits. This is the reason a lot of people say Elsa isn’t on the spectrum (aside from the fact that the writers didn’t come out and say so). Years of research has taught us that it’s much harder to spot autism in females than in males, because females are often better social “actors.” That is, a boy with autism might go ahead and spill every detail he knows about his special interest to anyone who’ll listen, social appropriateness be darned. (And that’s not always a bad thing). By contrast, research has shown girls usually observe their peers closely, and do what they must to fit in. They’ll imitate certain phrases and mannerisms. They’ll express interest in what their peers like, even if they have to fake it. They’ll study examples of successful social interaction without knowing they’re doing it. For example, girls with autism might internalize the way a movie character with a lot of friends behaves, or act the way a romantic heroine does to try to make boys notice them.

Elsa acts and reacts in many of the same ways, though she’s not a kid or teenager – Disney literature states she’s the oldest of the princess/queen line at 21. She fully accepts her role as Queen of Arendelle and has meticulously studied how a queen should speak, act, react, etc. Until her gloves are literally ripped off in one scene, the people of Arendelle have no clue their queen is hiding a secret, because she’s the picture of decorum. If anything, the Arendelle citizenry might have raised their eyebrows at Anna, who is classically clumsy and awkward, and whose lack of social graces are pretty obvious. Elsa though, has their respect and trust immediately, partially because she knows how to mask what’s really going on. Should she have to do that? No, just as any person with autism shouldn’t have to cover up who they are. But for Elsa, the primness and apparent standoffishness are survival mechanisms, as they are for many real life girls on the spectrum. That’s why I beg neurotypical people – never assume someone is stuck up because they’re acting “too proper.” They’re probably trying too hard to gain acceptance. Let them know they can relax.

-Specialized interests. This is one trait I looked hard for when considering Elsa as a candidate for the autism spectrum. In her film at least, it’s not there – unless you want to say she’s wholly focused on being queen and that her only outlet seems to come from ice. But tie-in literature indicates Elsa is more multifaceted than she looks.

Perhaps the best example of this comes from a picture book titled A Sister More Like Me, by Barbara Jean Hicks. In this book, we get both sisters’ points of view, as each wish for a sister with whom they have more in common. Anna points out that while she likes to run, jump, and play, Elsa prefers to read or do geometry. Anna considers school boring; Elsa thinks it’s fun and gets along well with tutors and nannies. Again, nobody ever says, “Elsa is like this because she has autism.” But Elsa’s bent toward the scholarly, her comfort level with adults, and deep interest in academia at the expense of traditional “kid activities,” suggest she may have something going on. As an adult, her intensely introverted nature lends more credence to this. No, not everyone on the spectrum is an introvert, but it’s a fairly common trait.

-Struggles to maintain friendships/relate on a friendly level. Hicks sums this up in a poignant line of her book: “[Elsa] could be an older sister, but she couldn’t be a friend.” Indeed, once her magic hurts Anna, Elsa is so convinced of her monstrosity, she isolates herself. But even after coming out of hiding, Elsa can’t relate to Anna on a friendly level. She tries, and the young women have some good moments, like their shared love of chocolate. Ultimately though, Elsa sticks to the role she knows she can play – older sister. This isn’t entirely spectrum-driven; since the sisters’ parents are dead, Elsa may feel she has to act as Anna’s de facto mother. Yet even when she should relax, she doesn’t. To go along with that…

-Rigid adherence to rules/routine/what “should be done.” This is a huge trait for a lot of people on the spectrum, and if you subscribe to the theory that Elsa is autistic, she’s no different. “Be the good girl you always have to be,” is her motto, and she doesn’t deviate. At one point, this rigidity wounds Anna, when Elsa refuses to bless her engagement to Hans. “You can’t marry a man you just met,” she says bluntly. She’s right, but her delivery and timing worsen the situation. Real life autistic people often struggle with this; the desire to be right or good can supersede “social appropriateness,” or the need to tune in to others’ feelings. However, this does not mean these people should be shunned. At its core, the desire to be a good, dare I say righteous, person is a positive thing. People on the spectrum simply need more help balancing that with social grace. Be especially aware if the person in your life is also devoutly religious or spiritual. They may engage in what Catholic writers have called “scrupulosity,” or assume God will punish them if they are not always 100% righteous.

-Deep empathy, sometimes to detriment. Taking into account the above, one might assume Elsa has no empathy, the same way they assume all autistic people have no empathy. In real life and fiction, this simply is not true. If anything, people on the spectrum are often empaths – people who feel so deeply, who try so hard to put themselves in others’ shoes, that they actually sabotage themselves. They come across as thinking everything is about them, and neurotypical people say so. Cue the shunning, the frustration, the grim predictions, you name it.

Elsa is no different. Again, it’s not obvious in Frozen, at least not for much of the film. Little kids won’t observe it, or if they do, they won’t know how to square Elsa’s empathy with the seemingly cold parts of her persona. But more mature people (read: Disney nerds like yours truly), can do some heavier analyzing. Elsa clearly loves Anna; even her attitude toward Hans stems from love. When she decides to “let it go,” it looks like she’s selfishly abdicating her position as queen. Yet through her dialogue, we see her first concern is actually for her people. Elsa’s reasoning, again, is that if she has to risk hurting those she’s supposed to care for, she needs to stay away from them. She actually lets herself be locked up rather than take that risk, or stand up for herself. And as we all know, Elsa’s ultimate act of empathy and love comes from recognizing, appreciating, and responding to the sacrifice of another.

So, is Elsa on the spectrum? I say probably so, and that thus, she has traits autistic people can relate to/might find themselves emulating. But again, that’s my opinion alone. You might read this and think, “Chick, you’ve hit the cocoa too hard.” And that’s fine. Just consider this a fun holiday post – a Christmas gift, if you will – to help you think about autism and other disabilities in a fun new way.

P.S.–Do other princesses or characters have disabilities/are they on the spectrum? Possibly. We’ve gone over a few who obviously do, like Quasimodo, and a few who represent disability, like Vanellope Von Schweetz. We may talk about this again; in fact, we probably will. But for now…

Merry Christmas, Happy Hanukkah, Happy Kwanzaa, and goodwill to all from the Nest!

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!

 

 

 

 

 

 

 

 

 

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?