Blog Bonus: IndependenceChick and the Quest for the Perfect Book

Yeah, I know that sounds like a cheap and potentially horrible Harry Potter knockoff, but I hope you also thought it was funny.

I got the idea for this post after I discovered a new disability-driven website, courtesy of my good friend A, who I’ve known since our Sunday school years. I’m talking cradle room, here. A is an intelligent, beautiful, and courageous woman with more vim and verve in her little toes than I have in my entire body. She works regularly with children who have autism and other disabilities–she used to be a nanny for a family with a child who has Angelman’s Syndrome. On Facebook, she posted a link to an article from entitled, “Who Gets to Stay Autistic?”

As you can see from the article, author Alissa Hillary raises a great question when it comes to the representation of characters with autism in middle grade (MG) and young adult (YA) literature. Who gets to stay autistic, and who gets to stay around? As in, who gets to go through his or her book without being magically cured of autism, or changed so much that the autism doesn’t become an integral part of his or her identity? And, who gets to go through the entire book without being sent to an institution or other environment outside the story because of autism? If a character with autism does not pass those two litmus tests, it is my opinion that the book has a serious problem.

This article was so good and thought-provoking, I started lurking around the site and reading other content. It’s there that I ran across the question that titles this post, because the site is crammed with reviews of MG and YA books about characters with autism and other disabilities. The reviews are basically based on how well the disability is represented, whether stereotypes exist, and whether the character with a disability (CWD) is allowed to learn and grow without being cured. (This is as opposed to a temporarily able-bodied main character growing as a result of knowing the CWD, who functions as an object lesson).

Some of the reviews reflect good books that talk honestly about the disability experience and deal with realistic characters. Some of the books reviewed have significant issues, though. Some of them, I have even recommended on this blog, just because they are unique or place CWDs in situations you don’t normally see them (i.e., romantic relationships). A quick word: please understand that I in no way meant to recommend any reading that stereotypes anyone or gives rise to negative feelings regarding disability.

However, sometimes, reading a book that gives rise to negative feelings about disability can be good. For example, if the negative feeling you get is, “Wow, how could anyone treat someone, even a fictional character, this way”–well, that’s good. If your thought is, “Wow, we need better-researched books than this,” that’s good, too. I will also say this: I doubt there is or will ever be a “perfect book” with a main character who has a disability.

For example, one reviewer says of Katherine Erskine’s Mockingbird that main character Caitlin “is told she has no empathy…it’s something she [is told she must] ‘work on.’ It’s as if empathy and autism are mutually exclusive.” And certainly, the last thing PWDs need is another source, even a fictional one, telling them they must be “worked on.” What are we here, cars? Jigsaw puzzles?

Another reviewer of Cammie McGovern’s Say What You Will points out that even though Amy and Matthew, both with disabilities, are in a romantic relationship, their disabilities are not fairly represented. Matthew’s OCD is discussed “in a ‘look at the freak’ way”–from the author and other characters. Amy’s cerebral palsy is discussed through the lens of inability; for example, she has explicitly told her mom she would rather use a wheelchair than a walker because walking is painful. But because Mom is determined that Amy walk, she will not listen. Keep in mind Amy is a senior in high school. That’s as in, legal adult who should be making that decision for herself.

The reviewer of Francisco X. Stork’s Marcelo In the Real World points out many good things about this book, most notably that “instead of being told what autism is and how autistic people think, readers are living it.” Yet the reviewer also makes the valid point that most MG and YA books about kids with autism focus on high-functioning individuals who want to imitate neurotypical behavior on some level. Rarely do you see a lower-functioning person with autism in fiction, and if you do, they’re a satellite character. The focus is often on how freakish and awful it is that they don’t speak, stim, and so forth.

So as you can imagine, I was a little bemused after reading all this stuff. I thought, will there ever be a perfect book on this subject? I can ask that with some personal authority because I’ve also written a YA book with a protagonist who has cerebral palsy, and it’s been published. I can only come to the conclusion that as with the other stuff in this world, there are no perfect books. Yet I can offer these tips to writers, including myself:

1. Do. Your. Research. Notice the emphasizing punctuation? It’s there for a reason. Now, I’m not saying you have to have Down Syndrome to write a character who does. That’s like saying no white person can ever write a black protagonist. You can. But, just as you wouldn’t have all your black characters speak in Ebonics or eat soul food 24-7, don’t rely on the only representation of disability you’ve ever encountered, which may be a stereotype. Don’t rely only on diagnosis definitions and clinical research, either. Rely on real-life accounts, face-to-face if you can get them, and look for discussions of differential elements.

2. Give your character a personality and interests that do not have anything to do with the disability. Remember too, that a CWD need not be gifted. It’s okay if he or she is, but that could cross over into “compensation” territory. You know: “Why are you upset about your blindness, Zoe? You speak Spanish so well!” If you’re writing twice-exceptionality, see #1.

3. Allow characters to learn lessons that aren’t disability-related. In other words, stay away from, “Look at all the great things I can do” or “I won’t let my disability stop me.” We’ve seen it a million times. Combine disability with some other contemporary issue. Play the what-if game. Ask questions like, what would happen if my CWD:
-Went on a search for the absentee parent who left 10 years ago?
-Stumbled across a classmate’s deadly plan to shoot up school–starting with the classroom of the teacher who has bullied the student with the disability mercilessly for 4 years?
-Was a teen and got pregnant or got an STD?
-Came out as gay?
-Came out as conservative–but he’s a member of the most liberal-leaning family in SoHo?
-Found out she was a wizard/witch (had to throw it in). 🙂
-Was accused of a crime, then had to solve it? (This one’s been done a couple of times, but that doesn’t make the idea trite–yet)

The possibilities are endless, so use them, already. You may not craft the perfect book, but contributions that follow tips like these could get us much closer.


It’s a Bird, It’s a Plane: How PWDs Can Deal with the “Super Handicapped Person” Myth

Hello readers,

Today we’re going to be talking about one of those “positive” stereotypes that can make life with a disability more challenging in some ways than the negative ones do. I mean, at least with a negative stereotype you can say, “People are such rude idiots.” But with positive stereotypes, there’s a part of you that wants to say, “Thanks,” while at the same time you’re thinking, “Uh, this is awkward.”

You know some of the ones I mean–PWDs are perpetually happy, are saints, are grateful for any crumb thrown to them, are brave for walking down the block. Well today, we’re going to look at the inverse of that last one. As in, instead of being considered brave for waking up, caring for yourself, and buying groceries, how does it feel to be expected to act superhuman?

Like many other stereotypes, the one that says PWDs are all superhuman might have had *some* basis in *some* twisted truth or other at one point. For example, it’s true that in the 1860s when Helen Keller was growing up, children born blind and deaf weren’t expected to do or be anything that typical children were or did. So naturally, when Helen went off to college and published great essays, she probably seemed like a hero. The same is true for people like:

-Louis Braille. Blind people weren’t expected to read or educate themselves, so when Louis invented Braille as a way for blind people to do this, he was probably seen as a kind of Superman
-Loretta Claiborne. Because she began her childhood with severe walking difficulty, she would not have been expected to compete in marathons.
-Temple Grandin. Considering the attitudes about autism that characterized her childhood years, do I need to explain this one?
-Ray Charles. Would he have been expected to play the piano while legally blind? I think not.
-Zach Anner. If you don’t remember this guy, he’s the one who got his own show on the Oprah Winfrey Network back in 2011. I’m not saying all his adventures weren’t great to watch, but I also think the focus was more, “I can’t believe someone in a wheelchair can do that,” instead of, “Wow, this dude is really cool.”

I could go on, but I’d never finish the post. The point is, yes, these people can be held up as examples for PWDs to emulate. Yes, they have accomplished great things and should be praised and rewarded. The problem comes in when we expect all PWDs to perpetually write bestsellers, climb Mt. Everest without oxygen, provide clean water to _____ (fill in your favorite developing nation here), and win Olympic gold. I see this as a major problem for three reasons:

1. It reveals and perpetuates fear. A lot of people cling to this myth of superhuman people with disabilities because they are, on some level, afraid to get to know them as real people. When they find out a PWD doesn’t spend his or her days winning Olympic gold, they often act disappointed. As in, “Well, you have this disability–haven’t you done anything to compensate for it?” Some temporarily able-bodied people actually believe that having a disability automatically endows you with some kind of sixth sense, genius intelligence, and/or superpower. The stereotype often gets fed thanks to the spotlight placed on savants and the books and movies that portray psychics in wheelchairs, genius gamblers with autism, and the like.

I’ve asked it before and I’ll ask it again: what is so scary about a PWD? Okay, I get it. Some of us use equipment that looks intimidating. Some of us can’t communicate traditionally and that can be off-putting. Some of us need help with basic grooming, and that scares people because they don’t want to think of anyone, including themselves, in that position. But if we never move past those fears, what will we miss out on learning? What relationships and experiences will we forfeit?

2. It invites undue pressure. This is the one that I run into a lot because my CP is mild and I’m smart. Actually, gifted, if you want to go by school labels, though I am by no means trying to brag. As Monk would say, “It’s a gift and a curse.” A gift because it makes navigating the world outside disability easier, but a curse because people constantly expect me to be, well, superhuman.

I remember being in about the fourth grade. I got A’s in everything, except math, where I regularly received failing grades. I didn’t know why, and my parents assumed it was because I didn’t like math and was therefore being lazy. A lot of my teachers blamed me for problems that, it turned out, were rooted in CP. I remember my own father saying incredulously, “You’re supposed to be a fourth-grade genius!”

See what I mean? Yes, PWDs can do wonderful things and most of us want to. But we are not the world’s trained seals. If the TAB population puts too much pressure on us to perform, that is what we will become.

3. It dehumanizes the PWD. In other words, some people have so bought into this stereotype that if a PWD ever gets upset or angry, or shows that he or she needs help–just like anybody else–suddenly the PWD has caused some great offense. As in, “I thought you were better/more normal than that.” Even if the attitude is the reverse–one that says, “You’re so amazing”–well, that leaves us wondering how to react. Do we say “thank you,” or do we say, “I appreciate that, but you kinda sorta made me feel weird by saying it?” And then, when that person acts shocked on the occasions that we aren’t so amazing–are we supposed to apologize?

Now if you ask me, yes. I would rather be thought of as a superhuman than as a drain on society or a drooling lump. But trying to make me into a heroine makes me feel sort of weird, and as if I’m being arrogant if I acknowledge my own accomplishments. I’d venture to say the same is true for other persons with disabilities. In fact, hands up–does this myth ever make you feel bad that you *haven’t* climbed Mt. Everest without oxygen? Yes, I’ll bet it has. It makes me feel bad I haven’t done that, and I don’t even wanna climb Mt. Everest. Heck, I have a hard enough time with regular hills, okay?

So in short: we’ve gotten rid of many negative stereotypes, exposing them for the crap they are. I’d encourage the TAB population to start doing this with the “superhuman” myth. We’re not Supermen and Wonder Women. We’re just people. Some of us are gifted, some of us are not. But we can all add many positive aspects to your world if you take the pressure off and just let us be.

Setting Spirits Free: PWDs and the Church’s Teachings About Independence

Hello readers,

Confession time. I have a hard time with God’s will.

I really do. Being a devout Christian didn’t give me an exemption slip. Every time I hear something like, “It was God’s will that this child have a severe intellectual disability,” “It was God’s will that this elderly woman get cancer,” and so forth, a part of my spirit rebels. Because if that’s God, then what kind of God is He? I know all the Sunday school answers about God’s ways not being our ways, but that doesn’t mean I have to like it all the time.

Fortunately, I’ve learned that many of the negative events in our lives are not actually God’s will. They are a result of free will and evil, which God acquiesces to out of love for us and our freedom even if He doesn’t want to permit them. I am also learning that God is worthy of implicit love and trust. That may not be your experience or journey but considering it’s mine I hope you don’t mind if I share it with you.

There are some areas though, in which I still struggle. That is, it’s easy for me to talk about permissive vs. acquiescent will when the subject is cancer, my own disability or someone else’s, the Holocaust, the Cambodian killing fields, you name it. Sometimes it’s so easy that for a minute I need to step back, get honest, and get mad. But in other areas, I don’t talk at all. One such area is the Christian church’s teaching on autonomy.

In my spiritual lifetime (20 years if you don’t count the three rededications), I have run across a lot of Scripture. I have taken at least 10 Bible studies–no, no, that’s wrong. At least 13. I was just counting the Beth Moores since she’s my favorite. I am on my fourth read-through of the Bible. All that to say, I should “get it.” But I don’t, especially when I encounter Scriptures that seem to speak against having an independent spirit. Let me try to explain what I mean.

The Christian church (and, as far as I know, Judaism and Islam too) teaches that we are all helplessly, hopelessly dependent on God the Father and the Lord Jesus Christ (omit the Jesus part for Judaism and Islam, though). This is because we were born in sin and have a desperate proclivity to commit it. If we hope to have decent lives and a non-tortuous eternity, we have no choice but to throw ourselves at the feet of God and say, “Here! Here I am! I can’t be good enough or get to you by myself. Take me the rest of the way. I can do nothing on my own and shouldn’t even try.” Now, when it comes to sin and salvation, I buy that. No questions asked. No objections. My metaphysical being, eternal soul, all that stuff–that’s way too big for one 5’4″ gal with an affinity for books and chocolate cake, and a secret appetite for songs like “Cell Block Tango” and “Mama’s Broken Heart” to handle. I Must. Have. God. And. Cannot. Function. Independently.

Where I have a problem though, is when the church takes this important teaching, and the teaching of avoiding a rebellious spirit, and tries to make it fit where it’s not supposed to go. I mean, is a high-functioning PWD meant to look at Scriptures that caution against having an independent or autonomous bent, caution against self-seeking behavior, and think that because they want a home of their own and to provide for themselves, that’s rebellion? Are they supposed to read cautions about the love of money and think that self-provision is somehow ungodly? Are they…and dear heaven, this is where it really gets me…supposed to read Scriptures that speak of using weaknesses to glorify the kingdom, and think that glorifying the kingdom means giving up their dreams?

I say no–an emphatic no. God doesn’t give us everything we want. Certainly he has said to me, “Wait for what you desire,” “A house is not more important than me,” and “Providing for yourself is not as important as building my kingdom.” But I don’t think he looks at a high-functioning PWD like me and says, “How dare you want to be anything like your temporarily able-bodied peers?” I don’t think He gets angry with parents of lower-functioning children who lament the things that kid can’t do despite their best efforts. I don’t think He looks at a person with autism who’s also nonverbal and thinks, “Because he is so pure, so innocent, the best way for him to live is in a group home with no education, given the goal of pointing to his nose.”

No. No. No. I think God is okay with having an independent spirit–listen up–as long as it doesn’t translate into, “Lord, I don’t need you.” What troubles me is, I’ve had to come to this conclusion mostly on my own. My church helped some, but sometimes when you wrestle with the divine you have to do it alone. Just ask Jacob.

The problem, I think, is that a great majority of the Christian church is still stuck in this mentality that says its members with disabilities are broken birds or sacrificial lambs. They’re (allegedly) poor and innocent, but weak and incapable, so having an independent spirit is out of character for them because they (allegedly) can’t use it. It might even be termed rebellion or sin. These people look at the interactions Jesus had with people who had disabilities and they conclude His main purpose was to heal them. So unless they are physically healed, they cannot and perhaps should not express an independent spirit. Well, I don’t believe healing was Jesus’ only purpose in these interactions–check the December 2011 archives for more on that issue. I also know what you get from that sort of thinking. You get broken-winged, caged, or confused birds who wonder if they’re rebelling and if God will punish them for, as He put it to the apostle Paul, “[kicking] against the goads.” Are PWDs who are also Christians meant to fly–or are they donkeys bending to their master’s will, plodding along in front of carrots?

I say neither. I say we are falcons. We need to be able to come back to our Master’s glove when He asks us, traveling when and where He chooses for our growth and protection. But–remember this….

We are allowed to fly.

What’s So Horrible About Autism, Anyway?

Indeed, what?

As you probably know, April 1 kicked off this year’s Autism Awareness Month. Whether we need an awareness month for autism or any other disability is debatable–check the March 2014 archives for a discussion of this issue. But since we’ve got an awareness month for autism, let’s talk about it.

From all I’ve seen on the Internet and my own social media accounts, most people raising awareness of autism are not trying to make the disability look horrible. In fact, they’re mostly talking about the people they love who have autism, or the strides we’ve made in diagnosing and treating it, or signs and symptoms of it that you might need to know if you suspect a loved one has it. All that is completely fine. As with many disabilities though, part of the reason we’re asked to be made “aware” of them stems from the medical model. That is, too many people still look at autism as this horrible condition, this thing that must be fixed and/or taught or disciplined out of people with it. They believe autism and productive lives and futures are mutually exclusive.

My question is: why is that?

I would argue that autism, perhaps more than any other disability, has a reputation for being one of the worst things that can happen to an individual. When we compare disabilities using “disability hierarchy language,”* we might say something like, “Well, at least your child isn’t autistic.” We say things like, “But she doesn’t look autistic” or “But he’s smart and verbal,” because we’ve been conditioned to think autism precludes intelligence and verbal capabilities, and has a certain “look.” Just a quick reminder: very few disabilities have classical features, and for those that do, the features say nothing about the actual person. People with autism (hereafter known as PWAs) are treated as less than people, perhaps more than the rest of the population with disabilities. Even those with high-functioning autism struggle to find and keep a meaningful niche in our world. They struggle to find gainful employment, meaningful relationships, and all the other things the TAB population has available to them because they are human.

But again, why is that and what can we do about it? Let’s examine these questions one at a time.

What is So Horrible About Autism, Anyway?

In reality, nothing. Let’s take a look at what “autism” actually means. It’s defined as “a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.” Autism Speaks defines autism spectrum disorder (ASD) as a “group of complex disorders of brain development” that have “varying degrees” of difficulty with social interaction, verbal and nonverbal communication, and repetitive behaviors. I don’t see anything inherently horrible in that definition. Its terms are pretty medical, but then so are definitions of other disabilities. And one important part sticks out: varying degrees. Like every other disability, autism occurs in varying degrees and forms for various people. That’s not scary–that’s a fact of life for PWAs and their loved ones.

As with all other disabilities, autism only becomes horrible if your perception is negative. The way I see it, the problem is that autism, more than perhaps any other disability, makes people think of worst-case scenarios first. Unfortunately, plenty of worst-case scenario examples exist. Where do we find autism in the movies and on television? Right–Rain Man, or small scenes in other films that show things like a ten-year-old with autism, in a room behind a two-way mirror, having a tantrum while a psychologist pleads with her to calm down and sings “Itsy Bitsy Spider.” When real-life autism is portrayed, the focus is often the difficulty of the disorder, the stress the PWA places on the family, and his or her stereotypical, childlike behavior. For example, children with autism featured on shows like Dr. Phil may:

-Smear themselves and surrounding areas with feces
-Not communicate beyond the word “mean”
-Have to be restrained
-Have little to no education, at least none that is discussed
-Have no discussed socialization outside family

Their parents often:

-Cry profusely on camera
-In the case of one mother, admit that they hate their own child because she has autism
-Lament that, “Dr. Phil, she doesn’t act like a fourteen-year-old is supposed to act!”
-Otherwise express severe stress

Documentaries and talk shows may also show:

-Parents agonizing over the future of the child, often with negative prognoses about what he or she will never do
-Adults and experts discussing progress, but clarifying the progress is somehow “not enough”
-More discussion and focus on weaknesses, diagnoses, and failures than success
-Parents who have been encouraged to stop all therapies so their kids will “act autistic enough” on camera, as Autism Speaks has done

Of course, one might say that’s the media. Their bigwigs are paid to sensationalize everything. Surely books and scholarly articles are better, right? Well, that depends. Many real-life stories, such as the stories of Temple Grandin and Carly Fleischmann, do focus on success and positive traits much more than the media does. For that, I applaud them. Yet:

-Scholarly articles continue to focus on the negatives of autism–the prognosis of what a PWA will never do
-Real-life stories continue to have a tone that says: Life is so hard with my autistic child–but I love him. For example, several years ago, Parents ran an article like this about a then-fifteen-year-old boy named Ben with autism. His dad made clear that he loved Ben more than life itself. But the article’s focus was more about Ben needing diapers, having to “assume the position” to be checked for a dirty diaper in public (standing, leaning over with his hands on the car), and his dependence on a stuffed pink pig. The argument is that for some parents, that’s life with autism. And I completely and totally understand that. But the problem, again, is worst-case scenario thinking.
-Real-life stories about persons with high-functioning autism or Asperger’s continue to highlight the PWA’s “deficits.” For example, a mother might write with glowing praise about how smart her son “Greg” is–but in the same article, she may also lament that he will never live independently because he needs to be reminded to perform hygienic activities and is constantly passed over for jobs.
-Options for independent living for PWAs continue being presented in a grim light. For example, a recent article on the website Shut Up About Your Perfect Kid focused on the subject of how a mother will react when she has to place her son in a group home. Not if, when. The group home is not presented as abusive, but the focus is on how this person will be separated from his family, whether or not he actually likes the home.

Now again, understand that I am not trying to diminish the cold truth about life with autism, or life with a loved one who has it. It can be extremely tough, and many parents do live in a worst-case scenario world where the PWA may not mentally age beyond toddlerhood. What I am trying to do is underline the fact that the worst-case scenario is not reality for everybody. Nor does your individual worst-case scenario have to become reality. For example, if your child has high-functioning autism or Asperger’s, he or she doesn’t have to be the next under- or unemployed, isolated adult in his or her generation of persons with autism. But the scenarios won’t change unless we do something, so:

What Can We Do About It?

What can an individual or small group do to make autism seem less scary, to help others see it does not have to be horrible? Let’s look at some positive examples:

-Change your focus. As you probably figured out, what we focus on when we talk about autism is a major problem right now. Instead of focusing on the negatives, let’s bring to light the accomplishments and strengths of PWAs. Shut Up About Your Perfect Kid, the Asperger Women’s Association, and similar sites have plenty of these. They feature stories about kids and adults with autism who:
-Are Eagle Scouts
-Make straight A’s
-Create beautiful paintings
-Own their own businesses
-Write books
-Have friends and real jobs that pay real money
-Are happily married

I challenge you to find THOSE stories first. Google things like “accomplishments of persons with autism” or “positive traits of Asperger’s.” You’ll find huge lists. Share these with people who fear the autism diagnosis, or people who already have it and wonder what the future holds.

-Educate yourself about autism. This means familiarizing yourself with common traits but also knowing that each case is different. It means reading up on autism research, but not running up to every parent of a child with autism that you see and saying, “I heard ___ causes autism.” In fact, get off the “X causes autism” bandwagon. I’d venture to say most of us don’t have the time or inclination to care about that. We care about living with autism and making the best lives possible for persons who have it.

-Utilize relevant and meaningful autism therapies. If you’re a parent or loved one of a child or teen with autism, make therapy fun. Center it on interests and cool new experiences. For example, try pet therapy or therapies like Surfers Healing, which gives kids with autism the unique opportunity to go to free surfers’ camps in California, Florida, North Carolina, New York, and even Mexico.

-When and where possible, get to know some real people with autism. Self-explanatory.

-If you’re a business owner or a human resources director, open yourself up to hiring people on the spectrum. Educate yourself and those around you to help make this possible. Think beyond the usual jobs, such as fast food work, although that line of work may be what some people choose, and that’s fine.

-Communities: Expand independent living options and opportunities. If you utilize group homes, make them welcoming, educational, and fun social places to be. Help families feel like they still have important roles in your residents’ lives–because they do.

-Push for expanded educational and social opportunities for people with autism. Draw focus away from the non-communicative, hand-flapping stereotypes as much as possible. Do not scold or shame a person with autism for narrow interests or repetitive behaviors, and do not take away interests and access to them as punishment.

-Encourage those with autism to find role models, whether or not the role models have autism themselves. I would encourage educators, librarians, professors, and other experts to seek out more famous persons with autism, however. Most people are only aware of Temple Grandin, and while she’s a super-cool lady, there are many more. In fact, let’s make the effort to find more famous people with all disabilities–and create them! More on that in a future post.

In closing, most of us have been exposed to some idea that autism is a horrible disorder to be feared. But it doesn’t have to be. As one of my favorite songs says, “Change your thoughts and you change the world.” Let’s start changing our thoughts about autism today.

* Disability hierarchy language = Language that consciously or unconsciously privileges one disability over another, such as, “Well, you’re deaf but at least you’re not mentally disabled.”