Sex, Lies, and Disability: The Truth about People with Disabilities and Love Relationships

As part of its Cultural Center (formerly Women’s Center) activities and outreach to women and girls to get them to open up about themselves and their experiences, my university, like many others, puts on Eve Ensler’s The Vagina Monologues every February. I tried out for them this year, but declined the thirty-second role I was given. I did this primarily because, even though I was assured I was not being discriminated against, I have had far too much experience with thirty-second, walk-on, stand-in-the-corner roles in theater. But I also declined because on reflection, the options given for the show weren’t really “me,” although I tried out with a couple of those options.

Of course, part of the reason they weren’t “me” was because some of the monologues were explicit. As a Christian, I wasn’t comfortable with some of the terminology, phrasing, and profanity used, to name just a few things. But even in those pieces that weren’t explicit, I couldn’t find a protagonist voice to truly get behind. One I truly identified with. No, this is not a post about my sexual or sensual experiences. It is, however, a post concerning mine and others’ experiences in the context of romance, relationships, and sex. It is a post concerning the fact that, even though society has moved past some disability myths, such as that people with intellectual disabilities can’t learn, or everyone with a disability is doomed to a life of menial labor or shut up in an institution, others still linger. (And unfortunately, the aforementioned myths still circulate in the minds of the disgustingly ignorant, more’s the pity).

One such lingering myth, which is fed because it has the appearance of truth, is that people with disabilities are relational and sexual zeroes. That we can’t possibly know or understand what it’s like to have a romantic partner or spouse. That we can’t give them what they need because we’re so needy ourselves. That we cause nothing but stress and pain in relationships and marriage. And that, yes, we are absolutely no good in bed.

I usually say “baloney” to myths like this, but in my humble opinion, this goes beyond baloney. It even goes beyond “garbage” or “crap.” I won’t use profanity, either, because I don’t think it even goes there. This myth is…well, it’s…it’s feces. It’s fish heads. It’s so painfully, laughably ridiculous that it ranks right up there with green plastic skirts on What Not to Wear. The construct that Oscar the Grouch lives in a trash can because he’s lazy and doesn’t want to contribute to society, or that Bert and Ernie really are homosexual, or that Cookie Monster is a pre-diabetic. The idea that the mothers of children with autism are or ever were “refrigerator mothers.” The idea of a high school geography teacher saying to her class, “America’s great because we’re not at war with other countries. We’re all peaceful and stuff.” Yes, according to a Sparknotes column, this really happened.

You get it. The myth is crap. So let’s get a fresh breath of truth in here, shall we?

As I mentioned in my post on parenting and disability, which is also a close relative of this one, the number of parents with disabilities (NOT “disabled parents”) is growing, as these adults continue to destroy negative stereotypes that claim they cannot be parents or have their own families. According to a research article on disability and sexuality by authors Doe and O’Toole, many parents with disabilities are actually now choosing to adopt children with disabilities, domestically and, yes, internationally. And no, that’s not because these parents couldn’t “naturally” have children–they chose to adopt these kids.

Of course, the natural conclusion might be: why? As a government agent in China put it when faced with a man who used a wheelchair and his wife without a disability, who wanted to adopt a child with physical disabilities: “Wheelchair man, wheelchair child, too much burden” (Doe and O’Toole). But was this government agent correct? Many parents of children with disabilities, even and especially those who have disabilities themselves, would say no. Why? Because they understand what a lot of people don’t understand or just plain refuse to acknowledge: those children are children first. And if the “normal, mainstream” way of doing something doesn’t work for your family, who’s to say you can’t find or create a system that does work? Homeschoolers, homosexual couples, couples with lifestyles that require being on the road a lot…they do it all the time. So why are parents with disabilities often seen as the one type of parent who can’t?

Now, let’s get personal. Let’s get back to the sex part, because, as Doe and O’Toole found in their research, “If you walk around with a kid attached to you, most people are going to assume you had sex.” Not so if you have a disability–even in America. Yes, it is still usually assumed that people with disabilities are incapable of sexual intercourse or pleasure, or even that they are completely asexual. Doe and O’Toole have a heart-wrenching take on this. According to some of their interviewees, even in the twenty-first century, many females with disabilities are not educated about themselves as sexual beings. Why? Because it is assumed that they will never live independently, have relationships, or have their own families. And because these accomplishments are often “marks of adulthood,” this attitude keeps the girl or woman with a disability “in the role of the dependent child.”

Ouch. As a woman who is single and saving herself for her husband, but very much wants that relationship, that household, that family, I gotta say it again: OUCH.

People with disabilities are not perpetual children, as you should already know. But we’re not asexual, or perpetual virgins, either. Like any other woman who chooses to remain a virgin until marriage, I do so because it is MY choice, not someone else’s for me. As for those people with disabilities who do not make that choice? Fine–let them make their own relationship choices, as you would for anyone else. It’s. Not. That. Hard.

“But Chick,” I can hear you say, “My daughter or son has mental disabilities, or major physical disabilities, or…” Whatever. The question in your mind is, can you, or even should you, educate them about their sexuality and the choices related to it? The answer? A resounding YES. People with physical disabilities enter physical relationships all the time, and go on to have wholly fulfilling relationships that are not based entirely on physical needs, but that the physical aspects are a healthy part of. So too, do people with mental disabilities, even those labeled “severe.” As with other things, they may just do so a bit differently than those without disabilities. For example, people with physical disabilities can be shown, taught, or figure out for themselves, ways to make sex comfortable and fun for them if some parts of their body don’t “cooperate.” As for people with mental disabilities, yes, they can understand exactly what a relationship, including the physical part, is, if explained appropriately. (By that, I mean, minus the condescending attitude). There are books and other materials out there written for these purposes–and they DON’T TALK DOWN TO THE READER. In fact, one such book, aimed at young adults with Down’s Syndrome, actually contains charts showing male and female anatomy to go along with the explanations of their functions. Ooooh, I can hear the shocked screams now…

So what’s my point? Simple: when I say people with disabilities are like everyone else, I mean it in every sense, including the highly physical and personal. We are not asexual. Nor are our desires “uncontrollable,” as some would have the world without disabilities believe. So stop perpetuating the stereotype, and start seeing us as desirable, whole people. Future generations will thank you!


Food for Thought: Food Rewards in Disability World

Hello again, readers,

First of all, thank you to those who are leaving comments and reblogging me; I appreciate the traffic and the feedback. The more of you there are, the more we can get the truth about disabilities, and more importantly, the people with them, out together. So keep reading, keep writing, keep reblogging, and keep enjoying.

Now to the contents of today’s post. I think you should know, I am writing it in my skinny jeans. Yes, I have a pair, and yes, they fit quite well. But I wouldn’t have brought them up except, as you can tell, this post is about food, and because some people–either through ignorance or the innocence of being young enough not to know better–might question how and why a woman with a disability can, or would dare, to wear skinny jeans.

You see, there is a stereotype against people with disabilities out there that says all of us are overweight. Like many stereotypes, sometimes that’s true–some people with disabilities do struggle with their weight, and until recent years, I was one of them. But as with all stereotypes, it’s not true all the time. The problem is, some people in Disability World–often the “experts”–are, ahem, feeding the stereotype. Let me show you what I mean.

In my graduate special education class, we watch short videos now and then that show special education classrooms, activities, students, and teachers in action, and we had one of these this week, called “Meet the Teacher.” The teacher, whose name I will not share out of discretion, showed viewers around her Ohio elementary school classroom, where most of the students are children with intellectual disabilities. This teacher makes great use of things that do help these children, such as allowing them to organize their own area, keeping schedules and notebooks in the same place, and using a sound indicator with visual and audial feedback to let students know when the room gets too loud. (Although as I have said before, this could be a good addition to the classrooms of students without disabilities in the lower grades). This teacher also knows how to incorporate real-life, meaningful activities, such as science experiments measuring plant growth, into her classroom.

All that said, I hate to finicky about one thing in the classroom that disturbed me, but I think I must, because it goes on elsewhere, too. The teacher’s classroom is equipped with a snack machine, and students are rewarded with snacks at intervals for doing good work. Now of course, you might say, what’s wrong with that? I’m sure there’s not one among us–myself included–who didn’t enjoy ice cream or a pizza party as a result of unusual achievement in school. But notice what I just said: unusual achievement. As in, not every day or week. As in, particularly good or high (such as the few highest Accelerated Reader scores in class, or a reward given to the whole class that was based on, say, the best test scores in the grade. I’d say more on how I feel about test scores in general, but that’s another post). Some rewards, you couldn’t even get until a certain level. For example, in my elementary school music class, we used to have Special Music Day, where instead of a lesson, we could all choose what to do. Snack parties were not permitted until third grade, and pizza parties, not until fifth.

Now, compare that with the snack machine in the special education room or, as was the case at my high school, the soda and vending machines just outside the room. Those rewards can be given more than once a week. The machines are filled with junk drinks and junk food. And they are used as primary motivators and enforcers for regular work, not especially good or high achievement. For example, I had an occupational therapist all through school, and in high school, I met her after school outside the connection between the math and special ed wing (some connection, though; the wing was still separate). We cooked a lot in those days, which necessitated going through the main special ed room to reach the special ed kitchen. One day, as we were headed there, I saw something on the board: the phrase “Cora is working for…” followed by a drawing of a bottle of Pepsi.

My reaction as a high school student was, how sad–how terrible–how demeaning. I couldn’t imagine myself having to earn a bottle of soda by doing simple work, or a bottle of soda being considered a reward. Nor could I imagine what I was working for being posted on a board for the whole class to see. Granted, Cora had an intellectual disability, so it was difficult for me to put myself in her shoes. Maybe soda was in fact a rare treat for her. But whether or not it was, I want to analyze the situation now from an adult and growing advocate perspective.

First of all, as I have said before, there is nothing inherently wrong with reinforcers. But many teachers and administrators–the “experts”–don’t use them appropriately. For example, it would be inappropriate to give out miniature candies as a primary reward for good work to high school students without disabilities, in most cases. So why is a small food reward appropriate for students of the same age, with disabilities? Frankly, it’s like saying, “Good girl; here’s a treat.”

Second, let’s take a look at what kind of reward we’re dealing with here: a food or drink reward, and mostly junk food. Parenting and educational experts will tell you it is not a good idea to use food as a reward or punishment with children (as in, if you clean your plate, you can have dessert). Granted, I’m sure some of us, myself included, were raised like that, and we’re fine. But as times change, so does our knowledge, and we now know that using food–a basic necessity to live–as a reward is usually counterproductive. It teaches children that some foods are good, and others are bad, and some, you only have to eat because you have been bad. It may also teach children to expect sweets and treats for performing the most basic tasks. We know all this is true for children without disabilities–so why are we using food rewards for children who have disabilities? Gasp–have the experts fouled up again????

Third, let’s examine the concept of “reward.” I don’t know about you, but if I’m going to be rewarded for something, I want to choose my own reward (unless it’s a gift or surprise from someone), and I want it to last. But food rewards generally don’t last long–you unwrap the thing, you eat it, and you’re left with garbage (okay, so some of the wrappers are recycable, but still). Also, the children with disabilities who are exposed to food rewards usually choose their own, but are restricted by the construct that it must be food. If I were in their shoes, even if my IQ was 30, I’d feel cheated. Why can’t we, for example, let children without disabilities choose a meaningful prize from a treasure box? Have free time to play a favorite game, go outside, or read a book? Earn tokens or tickets to be built up over time, then cashed in later for something truly special (i.e., a book to keep, a regular-size toy, a CD?) It’s a sad world when the people around you even try to control how you will be rewarded for pleasing THEM.

And while we’re at it, just a side note, people: what is the deal with this “earning food” business? As I said, food is a basic necessity to sustain life, although I’m not sure chips and candy bars fit that category. But to tell a child with a disability that doing simple, commanded tasks will earn a food reward–wait a minute, don’t we do that for cats or dogs?

But now, we come to the worst of it. Food rewards, for any children, tend to set off a dangerous cycle, and this is even truer for children with disabilities, particularly physical or intellectual ones. As mentioned, some of these children struggle with their weight and may need help making healthy choices. So, teachers and administrators make that a “goal” for the kid (often without considering whether the goal is appropriate or meaningful at the time). But then what happens? Junk food rewards are given in the classroom for what seems to be every little accomplishment. The kid eats the junk. The kid gains weight, or is penalized for not making healthy choices. The kid is accused of not meeting the goal, and is chastised or disciplined accordingly. But what did we forget? Oh, right–THE TEACHERS STARTED IT IN THE FIRST PLACE. Ay-yi-yi, and we think kids with intellectual disabilities have “problems!”

So, where, if ever, is a food reward appropriate? Well, certainly not from a snack machine in close proximity to a classroom, and not for every little thing done right. Let’s recap. In my humble opinion, food rewards are appropriate if, and only if:

  1. They are infrequent
  2. They are tied to specific, particularly positive achievement (often best for a whole class, such as a pizza or ice cream party)
  3. They are tied to specific levels within the achievement (as in, the possibility of making the goal, but not getting the party until you make that goal in a certain grade)
  4. And here’s the biggie: Food rewards are appropriate if, and only if, the major focus is not the food itself. What I mean is, yes, my classes received food rewards now and then, like those parties. But the teachers always focused more on what we did to earn them, such as our high scores or exemplary behavior for several months.

Those are the standards applied for these kind of rewards in relation to children without disabilities. So, why not make them applicable for kids with them?

Glad I could give you something to chew on. Now, I’m hungry. Time for lunch–and may I point out, writing this blog post didn’t earn it for me?

What’s Your Story: “Social Stories” and Autism–Lifesaver or Water to a Drowning Kid?

Hello, readers,

As part of my graduate M.A.T., I am currently taking a course on special education, SPED 639: Teaching Children with Disabilities in the Inclusive Classroom. I have been quite pleased to see that my professor, other students, and our text advocate inclusion, if not fully, then to a point (which is something we all need to work on). However, part of being in such a class means at times, we have to be exposed to methods of teaching or interacting with children who have disabilities in ways that are controversial. One of these is known as the “social story.”

If anyone isn’t familiar with these–as I wasn’t until recently–a social story is a short, simply worded scenario meant to explain how to act in, or cope with, various social situations and their ins and outs, to kids who have autism. And though I do not know if they’ve been used for children with intellectual disabilities, they look to me as if they could be. Social stories cover a variety of topics, such as:

  • Traveling to and from classrooms or other places in school
  • Cafeteria behavior
  • Playground/recess behavior
  • “Not biting or kicking our friends,” as one digital social story on Youtube puts it
  • Self-grooming and going to the bathroom (more on that in a minute)
  • Meeting new people

These are meant to be “simple and straightforward,” as the writers of, a website filled with these social stories, put it. And yes, I understand that because social situations may be difficult for children with autism, complicating matters with five or six ways that one could play out could make an already new concept even more confusing. But upon looking at these social stories, I found the following:


A Social Story Entitled “Time to Eat,” as taken from

The story includes these phrases, double-spaced and one line at a time on the webpage (though that may not be how they appear in a classroom format):

I sit with my family at the table to eat…Daddy feeds himself…Mommy feeds herself. I will try to feed myself…If I feed myself, Mommy will be so happy!

The social stories I have seen also often make use of the word “try,” as in,

-I will try to dress myself

-I will try to learn to play basketball

-I will try to walk to the line in school

One social story, entitled “Going to the Bathroom,” even contains the phrase, “I will try to wipe my bottom until it is clean.”

You do get what this is really saying, don’t you? Right–“Poor little autistic child, we know you can’t really do things right, but just try, okay?” (Insert pat on the head). Sickening.

One social story from the same website, about brushing teeth, also includes the phrase “When I am ALL DONE, I can have something special.” Not only is the all-caps arguably unnecessary, but the promise of “something special” makes me think that the child being exposed to this story may be being bribed to perform self-care, which perpetuates the idea that children with disabilities are “reward machines” who must be given tangible reinforcers constantly to do what people without disabilities learn to do naturally. (Sure, you might reward a very young child for performing self-care correctly while they’re learning, but not an older child).

I’m also disturbed at the social stories’ constant use of the terms “Mommy and Daddy” and the concept of making them happy. Now, understand I have known some children with severe disabilities, and making parents or teachers proud can be a motivator for them. In fact, whether we admit it or not, the praise of others and pride of others is or has been a motivator for everyone at some time. I mean, what do we do to get promotions at work? Try to please the supervisor. I’m not questioning the motivator in and of itself. I’m questioning the childish terms in which the motivator is phrased, and the fact that it seems to be a primary motivator. Only one social story I have seen, on the mentioned website and in other places, mentions the child’s pride in his or her own accomplishments as a motivator for performing the task being done. And quite frankly, I find that disturbing.

As with many methods used to help children with disabilities, I do not condemn social stories 100%. They are in fact research-based, and apparently have helped children with autism on all levels. What I’m asking here is, what’s the story behind all the over-simplification, childishness, and bribery? It’s not appropriate for children with high-level autism, children with mild to moderate intellectual disabilities, and many other children. As for the ones social stories could be appropriate for, their formats still seem demeaning to me as they stand. So if you’re going to use that method, why not write a new story? Nothing complex–we’re not talking about the next Great American Novel, here. But would you want someone explaining to you that you must do natural things to make others happy? How important it is for you to clean your own butt (past the age of 2 or 3, I mean)?

Right. As Kathie Snow once said, if you wouldn’t trade places with a person who has a disability for one day, think about that, then do what you can to change that outlook.

I’m a writer, and I love stories, but not the ones I just wrote about. I have a challenge for those writing social stories: let’s write new ones. Ones that include those with disabilities, and make their lives seem less stilted, less behavior-based, and more natural.

Why is Mommy Different?: Parenting and Disability (Yes, it can Happen!)

I’ve wanted to be a parent for a very long time. I’m not married yet, ergo, no kids, but I’m holding out tremendous hope for a family. The only problem with that, according to society, is my cerebral palsy. No matter how mild it is, CP would make some individuals believe I should never be a mother. These people would worry that growing up with a disabled mom would, among other things, put my kids at developmental, mental, emotional, and physical risk, or at risk for “parentification,” a word used to describe children who are forced to take on parent-like roles and responsibilities sooner than is appropriate.

To be honest, I used to buy this theory. Again, the mildness of my CP didn’t figure in. I just naturally figured, because of others’ attitudes, that subjecting my child to a disability would be a terrible, even abusive, move. I pictured my kids coming home crying or angry–with me–because someone at school said bad things about Mommy. I pictured myself not being able to make decent meals for them, or get them dressed because of buttons and hooks on their clothes. I pictured having to go to court to fight to keep my kids with me–and losing.

Unfortunately, according to a lot of people without disabilities, such pictures are very realistic. They look at people with any disability, but especially severe physical or cognitive disabilities, and wonder what we’re thinking to even entertain the idea of letting “those people” raise kids. They suggest sterilization, especially for those with cognitive and mental disabilities. An article I recently read stated that many parents with disabilities find their skills judged by a harsher, stricter standard than parents without disabilities. And, as with many constructs of Disability World, it might seem safer, even more humane, to discourage adults with disabilities from parenthood. As in, “They’re kids themselves; how can they raise a kid?”

Again, I used to buy that. Not so much for myself, but definitely for people with more severe disabilities. I naively thought that pairing an adult, or a married couple, who had, say, Down’s Syndrome, autism, severe physical disabilities, and so forth with a helpless little baby would be a disaster. But here’s the truth:

According to the Parents with Disabilities Network of the United Kingdom, 8 million people worldwide who have disabilities are now raising children, and–hallelujah–their numbers keep growing.

Services for parents with disabilities are cropping up around the globe. I’d like to give a personal shout-out to the U.K., who seem to have done a fantastic job with this. Their Disability Discrimination Act (DDA, similar to America’s ADA), gives parents with disabilities certain rights that Americans may not have thought to put into law yet (in the twenty-first century!) These rights include:

  • The right to accessible information (such as communicating with a parent who is deaf via sign language or pencil and paper, or simplifying technical explanations for people with intellectual disabilities). Actually, I’m sure most of us would like that tech-speak simplified, period.
  • The right to request–and then have–parenting classes and other such meetings held in accessible locations
  • The right to have your adoption application “welcomed” if you wish to adopt a child, as long as you are over 21 years old and can provide a stable home (notice, disability is NOT mentioned. Compare this to several nations abroad where prospective adoptive parents with disabilities are automatically disqualified).
  • The right to marry and have a family (U.K. says “found a family,”) and receive appropriate support before and after the birth of children.
  • The right to a private family life, in which the state cannot and will not interfere unless children are endangered, abused, neglected, or abandoned (the only reasons government would interfere in terms of parents WITHOUT disabilities).

So, to the U.K.: This Yank lady thinks you guys rock. As for the U.S., we have support groups for parents with disabilities, as well as similar laws on the books. But our parents–and perhaps some of those in the U.K., definitely those in other nations–with disabilities are still in danger. Did you know that in the U.S., 40-60% of children born to families headed by one parent or the other with a disability were placed in “alternative care?” In other words, taken from their parents, temporarily or permanently, just because the parent had a disability? And did you also know that 15% of parents with disabilities report experiencing efforts to have their children taken from them?

Tsk, tsk, tsk. Or, less politely: What in the heck????!!!!!????

It comes down to this: We go out of our way to make sure children with disabilities have the supports they need to have a “free, appropriate, public education” as defined by IDEA, and most of us would go out of our way to see those children live fulfilling, real lives. So why doesn’t that carry over to parenthood? If we have to use modifications to make parenthood a good experience for everyone involved, so what? If we have to simplify something, so what? I remind you, when things are simplified or modified for other reasons than being “special for the handicapped,” the general public loves it.

But Chick, you say, what if your children did have problems at school because of your disability? What if your family was “the weirdos?” What if your kids ended up in therapy, telling some shrink your CP ruined their lives?

Okay, let’s deal with that. I’d like to share a funny slogan I saw awhile back: “Nice job on the child-rearing. Let me know how the therapy goes.” Disability is not mentioned in that slogan. What’s my point? No parent, disability or none, is perfect. We’re all going to mess up. And yes, despite our best intentions, some of our kids will need a third party to talk to–who may be a counselor. Of course, we don’t want it to come to that, but it could happen.

In terms of other issues: again, I’m not a parent. But when I become one, I am determined to be the best mom possible to my kids. And that means, explaining to them, in ways they understand, what makes Mommy “different”–but also focusing on what makes her the same. Things like:

“Yes, I have cerebral palsy, and that means my muscles get garbled messages when the messages travel from my brain. So maybe I can’t play some games with you, and maybe my crafts don’t look ‘right.’ But…”

  • I can still bake you cookies and cupckaes for school
  • I can still help with your homework
  • I can still listen when you have a problem, or kiss it and make it better when you scrape your knee
  • I can still play other games with you, and find ways to enjoy all the things you likeI can still read you a story (with all the voices) or sing to you, and tuck you in at night
  • I can still hug you and kiss you
  • I can still love you

And isn’t that what being a parent is, anyway? Right. So, if the neighbors think we’re weird?

Well, don’t look at me. They’re the ones barbecuing fish at midnight or putting hideous decorations on their lawns–and nobody tries to take their kids away for that.

The Mystery of Misdiagnoses: Where Have we Heard this Before?

Happy February 2nd, readers. That’s right, it’s–GROUNDHOG DAY! And in honor of the hilarious Bill Murray flick of the same name, this post concerns a brand of deja vu that I’m sure most of us wish the medical community could get rid of: misdiagnoses, especially in terms of disabilities.

One of my favorite television shows is Mystery Diagnosis. Ironic, since I would generally rather have six teeth drilled in one day than set foot in a hospital or doctor’s office for anything beyond a routine physical. But I got hooked on the show a few years ago. I cared about the real people searching for answers, whom the medical community sometimes gave the shaft. I wanted to know where their mysterious symptoms came from. And it comforted me to know that for the most part, post-medical trials, these people were okay. But the actions of real-life physicians on this show regularly disturb me. I realize they often deal with very rare diseases, and that their patients’ “bizarre” symptoms often occur “for some unknown reason” (I’m quoting directly from MD here). Yet, these “known reasons,” if you will, seem weak at times. Let’s pull out a couple of examples, from the show and other sources.

My favorite episode (well, half-episode if you consider each 60-minute show has two stories), of MD is titled “The Boy who Only Hopped.” It concerns Sammy Maloney, who is a gifted math and science whiz. But when he was twelve years old, Sammy began having strange symptoms. His mother Beth describes most of them: “He had to have the lights on 24-7. He would not sleep in his bed. He stopped walking entirely; all he did was hop.” She also describes Sammy as having “complex motor tics” involving grunting, jumping, huffing, and gasping for breath, as well as holding his ears. He combined making spitting sounds with repetitive phrases–“Nothing is nothing is nothing…” At the pinnacle of this, Beth says, her son stopped combing his hair, brushing his teeth, or changing his clothes. Something as small as little yellow stripes on a formerly loved tartan blanket were now bad.

Now, I admit: I’m not a doctor, and I’m guessing most of you aren’t, either, so at first, this sounds like a textbook psychological issue. In fact, Sammy’s psychologist and psychiatrist diagnosed him with both OCD and Tourette’s. Pretty normal response, right? But here’s what gets me: Beth was constantly reassured “not to worry,” as long as Sammy’s symptoms weren’t “interfering with the home” (well, WHAT, exactly, did the pros think they were doing to the home?) This attitude persisted even after Sammy ran away in a stretch of dangerous woods, neglected hygiene, and would no longer sleep. I don’t know about you guys, but were I any sort of physician, physical or mental, I’d get concerned a lot sooner!

One doctor, Catherine Nicolaedes, eventually diagnosed Sammy with PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. Yes, strep throat. As in: all this, because of a strep infection. Sammy was asymptomatic for strep in terms of a sore throat, but strep antibodies attacked his brain. As Beth said, had it crossed anyone’s mind that Sammy could have an infection, the issue could’ve been resolved much sooner. Dr. N explains that PANDAS is still a relatively new diagnosis, but still, I wonder why “infection” never entered anyone’s field of thought until that point. And I have known of one other PANDAS case–a little girl in my church experienced unexplainable panic attacks until diagnosed with the same condition.

Speaking of panic attacks, let’s move on. I love children’s and adolescent literature, and read it whenever I have a chance. I was recently assigned to investigate a fiction book on a certain disability for a graduate class. I chose OCD, and Terry Spencer Hesser’s Kissing Doorknobs. The book’s protagonist, Tara Sullivan, is a smart, happy, “normal” girl, until she begins to fear stepping on cracks, because the thought enters her mind that she really could break her mother’s back. And it doesn’t end there. Tara suddenly crosses herself and prays compulsively, especially whenever someone swears. She counts random things, like slats in blinds. She has to arrange her food before eating it, and experiences a need for symmetry–tapping her left foot means tapping her right, also. And yes, eventually, she begins kissing her front doorknob before going out.

At this point, most of you are going, “What’s the mystery–textbook OCD, right?” Yeah. Readers know that. But Tara’s parents don’t. In fact, her mother threatens to kill her for doing OCD rituals, or slaps her when she kisses the doorknob. Her father asks if she can’t “just stop it, for once,” and her friends distance themselves from her. But it’s the doctors who get to me. Throughout the novel (ironically, copyright 1998), they diagnose Tara with:

-Attention-deficit disorder/immaturity

-Self-esteem issues and insecurity

-Borderline anorexia

None of these physicians, including mental health ones, ever probe into Tara’s behaviors and what causes them. It takes a family friend, a science teacher, to do that. And while I’m all for that kind of help, I must ask: Are you kidding me, here? I could understand missing PANDAS, but OCD isn’t that rare, is it? For crying out loud, a whole show with a protagonist who had OCD ran for eight stinking seasons.

And yet, the misdiagnoses go on–every year, every month, every week, every day.

What about you? Was your disability misdiagnosed? Were you ignored? How about your parents? Feel free to write in and share your stories.

As for the medical community: I understand what you guys deal with every day. But please, for everyone’s sake, put the magnifying glass to use a little more. Thank you. 🙂