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Archive for July, 2017

Please Cancel My Subscription to Your Issues: Not Everything is a Disability Issue

I was diagnosed with cerebral palsy at age two. A year or so later, I had been in preschool for a while and the teachers had noticed behavior they felt was unusual. I fixated on certain things, like the story of Cinderella. I sing-songed answers when asked questions or spoken to. I could communicate well, but not always the way people expected or wanted. After observing these and other behaviors, someone recommended my parents have me tested for classical autism.

It turns out I did not have classical autism, although the testing experts did tell my parents about communication differences they felt I might have. Mostly though, they said what I was doing could be chalked up to a little kid being a little kid. Looking back now, my mother says, “Naturally though, they thought [these behaviors] were disability-related” because I already carried a CP diagnosis.

And that makes me think. Once a child is diagnosed with a disability, why does everything suddenly become a disability issue? Your five-year-old who happens to have CP says “seed” and “runned” instead of “saw” and “ran?” DISABILITY ISSUE! Your twelve-year-old with a spina bifida diagnosis tells you her head and stomach hurt? DISABILITY ISSUE! Your sixteen-year-old with ADHD is ticked off because a coworker treats him like a three-year-old? You get it. But, is it always a disability issue, and does it have to be?

Advocate Kathie Snow talks about this in her excellent article “Disability Issue or Human Being Issue?” In it, she mostly addresses the concept of “compliance,” and how PWDs are expected to comply without question all the time, even when they shouldn’t. Kathie rightly points out that when a TAB person protests something, says “no,” gets angry, whatever, it’s because they’re human. But when a PWD does the same thing, it’s considered noncompliance and directly tied to disability. Hypocritical much?

I wholeheartedly agree that we need to stop focusing on disability issues and start saying, “When is this a human being issue?” But I’d like to piggyback off Kathie and point out, this goes way beyond behavioral compliance. For instance, when your twelve-year-old with spina bifida says, “I don’t want to go to therapy. I have a stomachache,” don’t assume she’s making something up because she’s disabled and wants to get out of doing work. Don’t assume that stomachache has to do only with her muscles and existing medical issues. She might be entering menarche and having cramps. She might have eaten something her body didn’t like. Heck, she might have appendicitis.

In the same vein, don’t assume that natural developmental progress is always tied to disability. I’m not a doctor or child psychologist, but as far as I know, it’s not unusual for a five-year-old to mix up tenses. That often has nothing to do with a disability diagnosis. Now, if the kid gets to about seven or eight and is still doing it, there’s a problem. But again, that might not be tied to the original disability diagnosis, nor does it mean he or she needs yet another diagnosis.

So, When is it a Disability Issue–or Not?

I will admit, this one’s tricky. Sometimes it’s better to go ahead and get the testing, ask the doctor or therapist, whatever you need to do, because it’s hard to tell. That was the case for my parents and preschool teachers because what I described can be symptoms of classical autism. They aren’t always, but sometimes it’s difficult to gauge what’s typical vs. what will lead to a disability diagnosis. So, one thing to keep in mind is: if your child doesn’t have a diagnosis, but is exhibiting enough symptoms that you think one could exist, go ahead and ask. Seek help. Do your research. If your child isn’t diagnosed, great. If he or she is, still great. Your kid didn’t change–now you simply know he or she will need extra help to reach the best quality of life.

But let’s say your kid, or teen, or adult child, already has a diagnosis. When do you know something is or isn’t a disability issue? Well again, the answers will vary. Disabilities are extremely situational. They are, shall we say, capricious creatures. But there are a few things I think you can watch for and ask yourself when determining the answer.

-Ask yourself: “What’s going on around my child?” When your eleven-year-old son, who is deaf, came home with a bloody nose, did he tell you some jerk kid was mocking his voice or sign language? Does his school have a known bullying problem? Are students with disabilities seen as more alike, or different? Does your child’s teacher report he has many friends? Often the environment is a much bigger problem than the disability. If you don’t know the environment, ask to observe; if you get pushback, go to the principal, the head coach, the superintendent, wherever you need to go, to get answers.

-Ask yourself, “If my child didn’t have a disability, how would I react to this?” Your eight-year-old daughter comes home with a C on a math test. She’s been diagnosed with dyslexia, so a part of you panics–does she have dyscalculia, too? But up to now, she hasn’t shown recognizable symptoms. Her teacher hasn’t said anything negative about her grades. In this case, react as you would if she wasn’t diagnosed. Say, “Did you do your best? How can I help you do better? Would you like the two of us to talk to your teacher together?”

-Ask yourself, “Is my child basically on par with other kids their age?” Again, sometimes hard to tell if you’re not trained in that kind of thing. And sometimes, your pediatrician will say, “There’s nothing to worry about” when there actually is. Sometimes you have to listen to your gut. If the doc has assured you your child will catch up, but it’s been months or years and that’s not happening, your parental alarm should be dinging.

But remember, the doc is right when he or she says kids develop at different rates. Again, this often comes down to observation. Your two-year-old might speak less than the others at playgroup, but is he still talking? Could she be quiet because the other kids are loud, and not letting her get a word in edgewise? Your middle-schooler might struggle socially, but is that only because of an autism diagnosis? Maybe not. It could be because his friend group is evolving, and he’s trying to figure out where he fits in. It could be because her friends are showing an interest in boys, but she doesn’t feel ready for that. (I myself had dreams of romance as a middle-schooler, but they were confined to books. Most boys my age acted like they still thought girls had cooties).

-Is the issue at hand coming up only in a disability context? That is, does your kindergartner, diagnosed with CP, only have trouble gripping and holding objects of certain sizes? Does your visually impaired second grader struggle to see or write only certain letters and numbers? Does your high-schooler only report headaches on days she is expected to go to “job sites?” (And on that last one: if yes, then it might be time to rethink the whole “job site” thing).

-How does this issue affect everyday life for you and your child? If your four-year-old is fixated on Cinderella, she’s probably being a little girl. If, with age-appropriate prompting she can talk about something else, she’s probably fine. But if she always brings the conversation back to Cinderella, she’s losing friends over it, or she’s not developing other interests–red flag. If your child with ADHD lashes out because a coworker is making fun of him, that’s one thing. But if the aggression turns violent, or if it happens with other people who haven’t said anything to him, it might be ADHD-related.

-Does it make sense to solve this issue in a “traditional disability world” way? This often comes up with undiagnosed kids but can with diagnosed ones, too. In other words, yes, your child uses a wheelchair, and is having trouble in PE. But her problems may not be wheelchair-related, and if they are, the solution is probably not to exempt her or have her do age-inappropriate PE tasks. After all, you wouldn’t want or expect that for a TAB child, or for yourself. Or yes, your child’s English grades have slipped lately. Should he be placed in special ed, as a PWD might automatically be? No, probably not. It’s probably time for a parent-teacher conference, and time to think about what your child needs from English class that he’s not getting.

In conclusion yes, there are disability issues out there. It comes with the territory, but assuming everything a PWD needs is tied to their diagnosis is dangerous. It pigeonholes them and keeps you, as well as everyone else, from learning. So let’s cancel our subscription to “disability issues” and start saying, “Even if this is disability-related, it is first and foremost a *person* issue. And as people ourselves, we can help solve it.”

Blog Quickie: (Don’t) Gimme that Old-Time Religion

Hello readers,

Welcome to my first Blog Quickie, so named because it will be considerably shorter than most. A blog quickie is what happens when:
(1. I have a topic that fits into the blog but covers new stuff along with old stuff, so I don’t want to belabor it
(2. It’s been over 7 days and I want to “whet your appetite,” so to speak. Yes, there are more July posts coming.

I’m currently reading a book from one of my all-time favorite Bible study writers and speakers. Over the years I’ve done multiple studies of hers. She has continually uplifted and challenged me, enough that I buy her non-study material as well. The book I’m currently reading is no exception, but one little thing early on in it gave me the idea for this post.

The book is entitled Get Out of That Pit, and is aimed toward Christians who are living in “pits”–situations where they feel stuck, unable to commune with God or stand against Satan, and unable to see beyond their troubles. Some pits, the author (Beth Moore) says, are pits of sin. That is, if you willfully steal money or cheat your company, with full knowledge and desire to do so, you are in a pit of sin. In that case, you jumped in, although you can also slip into pits of sin. That’s what happens when, say, you never meant to get involved in an affair, but what started as flirting got out of control. It’s what happens when you took the pain meds for their intended purpose because your quality of life was nil–and next thing, you woke up addicted to them.

What gave me the idea for this post though, is what Beth calls “a pit of innocence,” or getting thrown in. You didn’t sin to get into this kind. You didn’t ask for it. Something or somebody just threw you into a bad situation and, like Joseph’s brothers in Genesis, walked away or sat down to eat their PB&J or quinoa and vitamin water right in front of you.

Beth gave several examples of pits of innocence, such as:

-Your spouse continually abuses you or abandons you

-You get molested or gang raped

-Your house burns to the ground during the few months you didn’t have insurance

-You’re falsely accused, of a crime or something else, and have to pay for it

-Your best friend stabs you in the back

-A family member perpetuates years of abuse, manipulation, or crime onto you and your spouse, children, etc.

-You lose a loved one, for any reason, especially a child, a young spouse, or someone else you didn’t think would die for years

You birth a severely handicapped child

Yup, that’s the one. That bold type is there for a reason.

Okay, I get it. Having a disability, or birthing/adopting a child with one, is not a rosy situation. Sometimes it’s, well, the pits. I myself am working through whether my disability has become a “pit of innocence,” because sometimes the hand of God *allows* a pit even if He didn’t throw you in (which by the way, He doesn’t. God does not throw away His creations). But I have a real problem with the idea that the existence and raising of that child is a pit, or what another author, Wendy Pope, calls a Personally Intense Trial (PIT). The implications are pretty negative, so I’m not going back over them.

Unfortunately, I’ve noticed this mindset tends to permeate Christianity, and especially certain denominations I won’t name. Beth alludes to it again when she refers to a friend’s offspring as “desperately handicapped.” Christians on Facebook allude to it when they post pictures of people with obvious disabilities, with captions that say, “This person couldn’t get one like or amen–please share!” They do it when they post pictures of a mother cradling two young children with obvious disabilities–a picture with a caption lauding the mother as a hero.

I have heard fellow Christians–and, it being the South, many non-Christians in my region–say “bless their hearts” when speaking of, or even straight to, PWDs. Classic Christian hymns, poems, and other writings refer to PWDs as “lame,” “simple,” “crippled,” and “poor” (probably because back then, they were almost guaranteed lives of poverty–not that that’s changed much).

Now, do those writers mean to do that? Do Beth Moore, Wendy Pope, Greg Laurie, TD Jakes, whoever, mean any harm? No. I’d say the same thing about writers from other religions who said or wrote this kind of stuff. But in this case I have to say, “Please don’t give me anymore old time religion.” Not in the sense of fundamental truths about God, Jesus, the Virgin Mary, any of that. No. That’s fine. That’s great. Some traditions deserve to stand–need to stand.

But I don’t want anymore of this “poor, pitiful them” doctrine. I don’t want any other statements, writings, sermons, etc., that paint PWDs as poor and desperate, no matter how severe their disabilities are. Again, I GET IT. I really do. If the child you now hold in your arms will never say, “I love you,” will never recognize your face, will never whatever–that is a trial. That is an occasion to cry out to God. But the person him or herself is not a trial, and “old time” doctrines about disability say otherwise.

We need a new theology of disability. We need a theology that says, while the disability itself is the pits at times, people are not personified pits. We need a theology that says PWDs are strong, worthy, loved, needed, and gifted. We need to hear that PWDs are givers and providers, not just takers and consumers. We need to hear, “Living ingeniously” or “Succeeding his/her own way” not, “Desperately handicapped.” Let’s replace “bless their hearts” with, “Blessed be the name of the Lord for bringing them here.”

Selah.

Blog Bonus: Disability and Dystopian Fiction

Ding-ding-ding! Welcome to the bonus round!

I’m not a big dystopian fiction reader. I read The Giver by Lois Lowry in middle school and enjoyed it (well, except for that one scene with the little twin baby. I just about cried in class). I’ve read Rachelle Dekker’s The Choosing, which is sort of dystopia with a twist. And of course, I can’t ignore that dystopian fiction is huge among all audiences, but especially teens, young adults, and adults. Divergent. The Hunger Games. The entire Giver series (yeah, apparently it’s a series, who knew)? It’s everywhere.

As I said, I’m not too into the genre, because a lot of it feels and looks the same to me. The premises are engaging, but…well. That is, until I really paid attention to a certain YouTube ad. The ad is actually a trailer for a movie only available on YouTube Red, called The Thinning.

At first I was unsure why The Thinning intrigued me when similar offerings make me say, “Ho-hum, another one.” I thought it was because unlike in other offerings, intellectualism counts in the world of this movie. The year is 2039. The planet’s resources are completely drained, so the world must control population. In the United States, specifically Texas, the way to do this is through a single yearly standardized test. The test is given to first- through twelfth-graders. Those who pass, live. Those who don’t, are euthanized.

Being a brainy girl, I thought, okay. I can definitely relate to the pressure to keep up your brainpower. I’ve always hated standardized testing, so I like the fact that The Thinning is basically saying “Suck it” to that whole system. I might even pass the Thinning test were this real…and then I got really creeped out. (It didn’t help to watch a free clip where they show students getting the test results. Creepiest thing I’ve seen all week. I mean, a first-grade teacher even plays “My Country ‘Tis of Thee” to keep failing students calm as they are taken).

See, here’s the thing. I’m smart. I’ll be the first to admit it not because I want to show off but because I love using my brain. I was always picked first for spelling bees in school, and was the only freshman on a Quiz Bowl team of seniors and juniors. (The only girl too, so, go feminism). But, my visual and perceptual difficulties, tied to CP, gave me nightmarish problems with math. I have failed state math tests and had to take remediation to pass them. Math nearly kept me from getting a deserved scholarly distinction and could have kept me from earning a diploma. In other words, if the Thinning test contained math? Um, high possibility of dead woman walking.

And then I thought, what is up with that? Because in that scenario, the only reason I would fail would be because of a disability. Which then led me to this thought process:
-If I might have failed because of my difficulties, would students with intellectual disabilities automatically be “thinned?” (I’m using that term because I don’t want to write the E word again).
-Actually, persons with disabilities of any kind, including the elderly, are seldom mentioned in this or any other example of dystopian fiction. If they are mentioned, they’re usually the ones who get “thinned,” “released,” whatever euphemism you wanna use.
-What the heck is up with that? One, isn’t it just perpetuating the idea that PWDs are of lesser value and may in fact be better off dead? And two, why don’t characters with disabilities ever get a real chance to shine in dystopian fiction? (In any fiction really, but considering how huge the genre is…)

In brief answer to this: Yes. I do believe dystopian fiction, as it now exists, perpetuates the idea that disability = less. PWD = of lesser value (and that includes your elderly people, your severely injured veterans, etc.) I didn’t write this post to say, “Stop writing dystopian fiction, you bunch of ableist buttholes!” No. It’s a free country. Write what you want. In a world that so often doesn’t learn from its mistakes, I’d argue we need dystopian fiction to show us where we’re headed if we don’t shape up in a lot of ways. (Make of that, politically, religiously, and morally what you will; I just mean it in a general sense). But I do think that when it comes to PWDs, dystopian fiction is doing more harm than good.

I can hear some of you now: “The Thinning and those other examples aren’t real, so get over it.” Okay, I hear you. But I’m not going to “get over it” if what you mean is, don’t think about what dystopian fiction is saying. I just realized: part of the reason I don’t read it or watch it is because I know, in those environments, I would never have a chance. I’d never really be anyone. And, since the current world is so tough anyway, why do I want more of that? Why do I want a worse version of that? And what would happen if authors, directors–all those creative types who I so respect because we’re in the same line of work–tried to turn that around?

I mean, think about it. What would happen if we stopped saying disability is keeping us from living in a utopia? What if we actually privileged disability in some way? What if a PWD was actually a dystopian hero or heroine? I guess if you wanted to go really traditional, you could make him or her an escapee from the fate of death. But if you wanted to turn the genre on its head, how about:

-A PWD hero who lives in a world where disability is normal and able-bodied is freaky–working to save TAB people, including someone who bullied or tried to kill them?

-A world where only characters with disabilities exist, and a hierarchy is put in place based on that. You could even do a reverse hierarchy, where the most severely affected are the upper class, not the lower class, and the least affected are the lower class because they’re “too close” to TAB.

Or how about this one: A dystopian world that doesn’t turn on disability’s fulcrum, but where persons with disabilities actually get an equal shot to live? Where they take the lead in the missions and plot the schemes? Where they have the brains and brawn? Where–oh, wouldn’t this be different–someone with a disability might be a villain?

The possibilities are endless. To my fellow creatives, I say, you’ve got an imagination. Use it. Take characters with disabilities off fictional death row–because we’re in the fictional world just like the real one. When that world gets in trouble, we wanna kick some butt!

Do Advocates Have “Savior Complexes?”

Happy July 5, readers!

I hope everyone had a marvelous Independence Day. Myself, that day has always been kind of a hard day for me, for many reasons. I find fireworks too loud and invasive (when you have no depth perception or peripheral vision, they always look like they’re invading your personal space). I don’t do heat and bugs, and many of the activities people do on Independence Day are pretty physical. Basically, I want to get in a time machine and tell the Founding Fathers, “Dudes, you couldn’t have declared your freedom in January? October? Even April, for crying out loud.” But, as important as I know independence is, I’ll go with it.

As you might anticipate, Independence Day also makes me think of independence for people with disabilities–or the lack thereof, in many cases. It makes me think about what I do as an advocate. And that brings me to today’s post, a question that occurred to me a little while ago. I think it’s time to face, and try to answer, whether advocates have savior complexes.

I began asking myself this question several months ago after seeing an article written about the film The Zookeeper’s Wife. If you haven’t seen the movie or read the book, it’s about a German couple who use their zoo as a way to protect and save Jewish people from the Nazis during World War II. It’s a great story, but the article I read gave me a new perspective on it. The writer claimed stories like The Zookeeper’s Wife consistently put Gentiles in a savior role, while making Jews look and feel like pathetic, helpless victims. The author claimed such stories tend to appropriate the Jewish experience, or tell only the parts of it that would benefit the Gentiles, the “heroes.” The fact that the Jewish people of the 1940s were heroes in themselves is hardly ever mentioned in these stories, the author claimed.

Now, this author wasn’t Jewish, so I knew the beef wasn’t personal. I also questioned how seriously the article’s claims should be taken. The writers of TZW and stories like it were, I felt, not trying to discount anyone or make them feel like victims. In my experience, such stories usually celebrate the triumph of the human spirit, Jew, Gentile, or otherwise. There was a part of me that said, “Great, more political correctness gone mad.” But then I put myself in the author’s shoes and thought, “She may have a point–and a big one at that.”

Let’s replace “Jewish” with “disability” for a minute. In fact, for a minute, let’s use the word the world tends to use. Let’s replace “Jewish” with “disabled.” If the people being saved or protected in a story like TZW had disabilities–were visibly different–would the story change? Would temporarily able-bodied people look more like Superman and Wonder Woman?

We know the answer: yes. We know that answer because we see it all over the media. The child who stands up to a kid bullying his friend with a lisp, stutter, or brace on the playground is always the hero of the after school cartoon. The man in a wheelchair who makes a brilliant presentation at work is only able to do so after people have cast aspersions on his abilities–and after a TAB coworker gives him a pep talk. The police officers who find the autistic child who wandered into the woods are (rightly) held up as heroes, but no one ever credits the autistic individual for surviving, remembering certain skills, or knowing what to do. The media definitely has a savior complex when it comes to PWDs because we are so often portrayed as helpless. But are advocates, who want to change that, part of the problem, too?

It’s a thorny question. It’s one I wrestle with a lot. I don’t want to be anybody’s savior. I don’t want people to call me a hero for saying what common sense should dictate about a fellow group of human beings. But if we as advocates aren’t careful, the savior complex can slip into what we do and say. To avoid that, here are a few tips.

-Make sure the person you’re speaking up for really wants the help. In other words, never assume that because a PWD is standing on a full bus, it’s because people refused to give up their seats. Don’t start yelling at or shaming TAB people when you see a blind person navigating a crosswalk alone. It’s a lot more productive to say, “Would you like my seat” or “Excuse me, would you like help?”

-Give PWDs in your life the opportunities to do real things. The reason PWDs are so often painted as needing to be “saved,” is because they aren’t given the opportunities to save themselves, achieve what they want to achieve, etc. The “classic” portrayal of a PWD–someone who stares at the floor, slumps to avoid being seen, and is only spoken to/about in terms of disability–is a victim. That portrayal says to the TAB world, “If you don’t help them, who will?” (Which, what is up with that–we are not the stars of an ASPCA infomercial)! A PWD who goes to school, hangs out with friends, joins clubs, pranks coworkers, and buys a date a drink–that person may need someone to stick up for them now and again. But in general, that person is just as able to rescue or protect as anyone else.

-Be careful how you speak. In other words, yes, we should talk about the flaws of the medical model of disability. We should talk about the flawed logic in constant separation and segregation. We should expose the truth behind group homes, sheltered workshops, and the like. But we have to be careful how we couch it. I remind myself of this a lot, because it’s easy for me to get angry at the injustice of these things and therefore, think all doctors, all group homes, etc. are bad. As much as possible, resist the urge. For example, don’t blame doctors for doing their jobs the best they can. If they really have crossed the line, such as in telling you your baby with Down Syndrome should automatically be institutionalized, call them out. But don’t paint the whole group as evil. Same goes for group home administrators, special ed teachers, etc. I *know* how hard this can be, but it is worth it.

-Rein it in. As tempting as it can be to get on a soapbox, wait until the conversation actually lends itself to an advocacy discussion. Again, I have to do this a lot, especially around certain people (teachers, college students studying therapy or special ed, and so forth). If we talk about PWDs outside advocacy, we will teach the rest of the world they are more than the latest marginalized group.

-Give yourself a break. If you’re an advocate who also has a disability, like me, you may find advocacy harder because hey, it’s your whole life. You don’t know what it’s like not to have to stand up for yourself, or have others stand for you. It can get exhausting, and take that from someone who knows. As much as you need to, take a break. Say, “I’m not going to think about my (X disability) today. I’m just going to have fun/be me/do what I need to do.” If the environment makes that difficult, reach out for help, or leave the environment when you can. If you need to, say no. Example: When I get invited to fireworks displays I now say, “Thanks very much, but they aren’t my thing.” That gives me the freedom to curl up with a book, be quiet, and indulge my right not to think about how disability affects my Independence Day experience.

It is our right to advocate, and PWDs do need that. They welcome it in many cases. Yet it’s often easier and more productive to let us advocate for ourselves. Let’s all advocate together, the right way, so we can all experience independence and heroism.