Monthly Archives: July 2012

What’s Really Behind Curtain #3?: Giving People with Disabilities “Consolation Prizes”

Hello, readers,

Okay, I admit it–I’m a game show enthusiast, but I’m picky about what I watch. My favorites? Jeopardy, Are You Smarter Than a Fifth-Grader, Trivial Pursuit, and the upcoming Great American Bible Challenge (premiere slated for August 23rd, GSN). In other words, game shows that don’t particularly focus on winning the BRAND…NEW…CAR behind curtain number three. But I think that kind of game show works better with the topic of today’s post. So, let’s do this Jeopardy-style, shall we?

Answer: It’s the role, job, or position that we give people with disabilities, telling them that it’s important, but covering up the fact that it’s the one we don’t want.

Question: What is a consolation prize?

Show of hands, studio audience: how many of you know what I’m talking about? How many of you have seen this happen to a child or adult with disabilities? You know how it goes:

Little Robbie wants to play basketball. The problem is, he uses a wheelchair. So the coach, not knowing that modifications can be made, or perhaps not wanting to deal with the fallout should Robbie happen to get hurt (or should rival teams scream, “Unfair advantage!”) says to little Robbie,

“Robbie, I’m so glad you’re on this team. You have a very important job to do. You’re going to be our equipment manager!” Never mind that Robbie would much rather be playing the actual game.

High school student Charlotte wants to be in the school play. She has a form of autism, but she can remember lines and say them with expression. She gets distracted or upset around things like loud or unexpected noises, but is generally focused. The director, though, doesn’t think through modifications very well (such as marking Charlotte’s script or helping her prepare for any particular “noise issues,” like if the play calls for a thunderstorm, a gunshot, or a falling beam). Instead, she assigns roles and then says Charlotte is “the most important person of all”–but that somehow means a non-speaking role, or one where Charlotte gets to say maybe one thing, and sit in the corner the rest of the time.  (Maybe her role is kind of a centerpiece, like the willow in Wind in the Willows, but come on).

Megan is an adult who works at a farm and garden designed to teach children the benefits of nature, where their food comes from, and how to take care of plants, among other things. Megan would like to take a leadership role in her organization’s new gardening project, because she loves, and is good with, plants and flowers. But Megan has Down’s Syndrome, so rather than offer ways for her to work in the role she wants, her supervisor says,

“I’ve got a better idea, Megan. Why don’t you be head of our gardening clean-up committee?” In other words, a menial job that involves picking up after the “normal” workers.

I’m not suggesting that people with disabilities–or anyone, for that matter–should have plum, leadership roles all the time, or that supervisors, teachers, and coaches shouldn’t be responsible in how they mesh the person with a disability’s role into the bigger picture. Nor am I suggesting that one job is inherently better than another; some people with disabilities, and people without, do gain satisfaction from the jobs others consider menial. I only use “menial” disparagingly because in many cases, the menial stuff is not all a person with a disability can do. Yet, it’s what gets offered as a consolation prize for what they really wanted–and were really capable of.

Here’s a wake-up call, folks: Robbie, Charlotte, Megan, and other people with disabilities know when they’re being given consolation prizes. What’s worse, and what hurts them more, is that they know when you’re being phony and nicey-nice about it. No matter their IQs or what you *think* they understand, they know. And they’re probably not as happy to take on the roles nobody wants as you think they are. In fact, they might be just plain mad! And if you think people with disabilities don’t get upset–or that their being upset is nothing other than a direct result of the disability–then go back and read the rest of the blog.

You’re probably asking, “Chick, how do you know all this?” Answer: I know because it happened to me. And no, this is not a bitter post that I wrote to get back at those who did it to me. This is my way of bringing the problem to center stage, if you will. I was the one who got the consolation prize. As in, my musical director called my line delivery “phenomenal,” and though I wasn’t a virtuoso, she acknowledged I could sing. The problem? Those pesky dance numbers. But here’s the kicker.

That director could’ve modified a supporting character’s role so dancing wasn’t required (I wasn’t asking for leads, here, or trying to take parts from people who honestly did better than me). She could’ve even decided that–gasp!–a character could have a disability, and it wasn’t a big deal. What did she do instead? Right–I ended up in the chorus line (whose main function is to, guess what, dance), or given a walk-on, which was made to seem like a big deal.

I love cooking, and in school, I was excited to try it for the first time as part of an exploratory course (this was junior high). But the girls in my group decided I would “get” to read them the recipe, or fetch them ingredients, or throw things away. That’s not even a consolation prize–that’s like the participation trophy they give the kid who sat on the bench all season. As in, are you people kidding me????

So, to close out, let’s do a Daily Double, shall we? We’ll do the question first this time: What should we do instead of constantly giving the people with disabilities in our lives consolation prizes? Should we:

A. Not let them do anything, because no matter what, they’ll whine about what they didn’t get?

B. Give them roles they can’t fulfill, and then say, “I told you so” when something negative happens as a result?

C. Listen to what they are asking, see their true capabilities, and modify as needed?

D. Create a “special” program just for them?

If you guessed C, congratulations. You’ve been paying attention. If you picked A or B, you either have premenstrual syndrome at the moment (or a male counterpart thereof), are jaded, or just plain don’t care, in which case I hope tomorrow looks better for you. If you picked D, well, that is a time-honored solution, but it often doesn’t work as well as we think it does, even though for a lot of people with disabilities, that may sadly be the only option. But let’s not leave it at D, shall we? Let’s instead make option C our true goal, and then make it happen.

We’ve got too many future stars waiting not to make it happen.

 

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The Invisible Family Member: When Disabilty Affects Sibling Relationships

Hello, readers,

Today’s topic: siblings, with and without disabilities. Most of us have them, whether they’re full, half, adopted, or step. And really, in most cases, unless you’re in a very formal situation such as having to fill out government documents, those prefixes don’t matter and aren’t needed. Your sibling is often the first kid you spend a lot of time with, the first you fight with, and the first you play with. You may not seem close–for example, my little brother and I fought like crazy growing up. And we’re not huggy-kissy now, in part, I guess, becuase he’s a guy. But if anybody except me gave him a hard time, I’d be on them like a piranha on a ham sandwich. And I’m guessing a lot of you are nodding and smiling right now because you feel the same way. Although if not–if you and your sibs did or do have a bad relationship or none to speak of–I am truly sorry and sending hugs.

Here’s the thing about this post. Some of us grew up, not just with the siblings we could see. Some of us had an invisible family member–our sibling’s disability (or in some cases, more than one, or different disabilities spread out among more than one kid). We couldn’t see this family member, but we knew it was there. Its personality varies–some disabilities are quiet and unobtrusive except in certain situations. Some are constant, but can be satiated with a specific set of modifications, schedule changes, or whatever. Some are capricious; meeting their demands change from day to day, hour to hour, minute to minute. But no matter the personality, this invisible member affected our families in ways we couldn’t always anticipate and definitely didn’t always want.

Some of the people reading this–and the person writing this–were or are the sibling with the disability. And again, no matter its manifestation, we knew it. No matter its manifestation, the disability affected our sibling relationships. For example, I remember being about ten, my brother about six. He could tie shoes. I couldn’t. My mom suggested I get him to help me, probably because she thought that would create a bonding experience. The response she got, not in these words, was,

“Are. You. CRAZY????!!!”

When we were older, my brother and I commisserated over the presence of this invisible family member. I shared that I envied the freedom he had and that, at times, he didn’t seem grateful for. He had a driver’s license. Not me. He could ask to go to other cities with friends and, if they were good kids and promised to be careful, he was usually allowed to go. His body did what he wanted. But, he shared with me, he envied the attention he perceived I got from my parents. “If you fall over, Mom freaks,” he said. Of course, I pointed out that I didn’t ASK her to freak, but he had a point, as do many sibs in his shoes. No matter how great your parents are, no matter how they try to avoid it, a child with a disability will take attention away from children without one. I hated that for my brother. I hate it for other sibs without disabilities. But there it is.

Siblings without disabilities also face other issues. For example, Kathie Snow writes about “sib shops,” or places where these siblings go to talk about having a family member with a disability and the effects that incurs. These can be seminars, camps, whatever you like. And in theory, there’s nothing wrong with them. Were I in my brother’s shoes, I would want a chance to connect with kids who had experiences like mine. But what tends to happen is, the sibs get painted as victims just as much as the kids with disabilities do. As in, “It must be so hard for you,” “How bad is it”–that kind of attitude. Sometimes, the sib with a disability is painted as someone who takes from his or her brother or sister, making their lives miserable. And family life in general can be painted as tragic, sad, or perpetually stressful and frustrating–which it wouldn’t be if that kid with a disability weren’t around. The message given, however benevolently couched, becomes, “It would be better for you, and your family, if your brother or sister were not around.”

What is UP with that?

Now, I am not for one minute suggesting every sib shop, seminar, camp, and so on is like that. Some can be quite beneficial. And I am not suggesting these activities should never be done, or that disabilities don’t bring frustration or stress. They do, to everyone involved, including the person who has the disability. Actually, from experience, I can tell you I’ve felt guilty about that–lower than gum under a shoe, to be honest. But the thing the directors of these sib shops or family seminars or whatever sometimes forget is, the disability is the stressor, not the person. Disability does not, and never will, = person. If we continue to act like it does, families will continue to suffer.

The truth is, a lot of siblings have written or otherwise shared that they’ve learned valuable lessons from their sibs with disabilities. They have good relationships, and they feel like equals–because they are equals, and are treated as such. Even the sibling who has had to sacrifice parental time and attention, his or her own wants, or other things because of a severe disability such as profound physical or mental issues, can have a good relationship with that sibling. And therefore, the child with the disability strengthens, not weakens, the family.

But in some cases, that’s not true, and we need to work on improving that. I’ll give some examples, both real and fictional.

First, the real examples. I’m an avid reader of the Dear Prudence column. This week’s live chat includes a letter from the neighbor of a family with two children–a nine-month-old baby and a four-year-old with severe disabilities. The neighbor writes that the mother cares for the older child 24-7, literally. As in, the baby gets neglected. It’s allegedly to the point that the baby won’t cry because she knows she won’t be tended to, and that when the neighbor, who comes over at times to “take the baby out,” comes over, the baby acts heartbreakingly excited to be cuddled and paid attention to. The neighbor’s question: should I call the police to report neglect of the baby, even though the mother is obviously loving and dealing with a really tough situation?

Prudie’s answer: Basically, no–the real question at hand is, why hasn’t this family been encouraged to look into social services, respite care, facility care, and so on? You can check the full answer out at slate.com, as well as reader addendums.

Now, you guys ought to know how I feel about the answer to disability being, “Stick the kid in a facility.” And frankly, I’m not a big fan of the term “respite care” because of the connotation–that the individual with a disability is a siphoning, draining burden the other family members need “respite” from so they won’t have to deal with the constant care and demands of that person. But in cases like this, I have to agree with Prudence. Not about the facility option–no, never. Institutionalization is not my bag, and group homes should be carefully investigated. But respite care? Other people to help pitch in? This family needs it, because from what the neighbor says, the baby is being neglected, and someone must step in. If that turns out to eventually be law enforcement, that’s heartbreaking, and I hope and pray it will not come to that. But if it does, that may be what’s best for that family. Why? Because although the older sibling does need 24-7 care, the younger one–a baby who cannot speak for or care for herself–is facing real neglect. This isn’t about who Mommy appears to love more; this is about making sure each kid gets what each kid needs and deserves, without it being at each other’s expense.

Fictional example: Jodi Picoult. She’s one of the few secular authors I read, and because of her penchant for strong language, I only have two of her books. But the two I do own, Handle with Care and House Rules, deal directly with what it’s like when a child with a disability has a sibling without one. Her writing is real. It’s raw. And it’s a perfect example of what should NOT happen in this type of family.

In HWC, the character with a disability is five-year-old Willow O’Keefe, a scary smart little girl with Stage III osteogenesis imperfecta, or brittle bone disease. Literally, this girl can slip on a wet floor and break a bone. She broke bones being delivered because of birth stress. In the book, her parents are accused of child abuse on a family vacation because they forgot Willow’s doctor’s note explaining the situation to anyone who might see Willow’s breaks–or evidence thereof–and get suspicious. \

Amelia is Willow’s big sister. No disabilities. Also smart, pretty, spunky–a great kid. And she loves her little sis. But, but, but. She’s told not to ice skate on the pond outside her own house, because “It’s cruel to Willow.”  On the family trip to Disney World, Amelia is not allowed to go on any fast or big rides, because Willow might break (it’s never considered that she could go with Mom or Dad, while the other parent watches with Willow and waves). Her need for attention gets so bad, in fact, that she contracts bulimia in response to her own guilt for feeling resentful toward Willow and guilty about what she doesn’t do for Willow (for example, Amelia blames herself for the child abuse fiasco because she was supposed to bring the doctors’ papers to the van).

Now, am I suggesting Willow should always be sidelined because of what Amelia needs or wants? No. Should Willow have to put herself in danger for Amelia’s sake? No. But neither should Amelia be denied natural experiences just because her sister has a disability. (And really, nothing in the book indicates modifications were explored, which creates another problem). And certainly, Amelia should never have spiraled into the pit of an eating disorder because of her family environment.

Second example: House Rules. Character with a disability–Jacob Hunt, age 18. He has Asperger’s Syndrome and is a forensics genius, but he can’t stand it if you move his clothes out of ROYGBIV order. He has a meltdown when the Free Sample Lady doesn’t show at the Food Co-Op at her regular time because of bunion surgery. (In his defense, she was going to hand out desserts that day). He doesn’t have any friends. But, like Willow, he’s still a great kid.

Sibling: Theo. No disabilities. Age 15. Has the unique experience of being a skater and an honors kid, apparently uncommon in his school. Also a basically great kid, but increasingly frustrated with Jacob. No, make that just plain mad. Why? Because he’s expected to “understand” when, say, Jacob’s meltdowns prevent him from going to the DMV to get a driver’s license, three times. He’s expected to “understand” when an outburst gets him physically injured. And, as he says, he’s not allowed to say–not even allowed to think–that life would be easier without Jacob, even though he does love him.

Do you see the problem? Yes, siblings need to “understand” about disabilities. And sometimes, yes, the disability needs to come first. But in my humble opinion, not to that extent. And in my humble opinion, no kid should have to be like Theo and stuff down his feelings about his situation indefinitely. (Because of this, Theo becomes a kleptomaniac who also sneaks into other people’s houses just to hang around).

Yes, having a sibling with a disability is hard. Raising kids with and without disabilities at the same time is hard. Sometimes, it can be heartbreaking and, as I said, make us just plain mad. And that’s okay. But as I hope to have outlined, there are ways to deal with it–and not deal with it. Namely, one child should never be placed on a pedestal at the other child’s expense. Now, does that mean the sibling without a disability can haul off and say, “I wish you’d aborted that kid?” or hurt the sibling in some other way? No. But nor does it mean the sibling gets what they want, whenever and wherever they want. If that happens, the disability–NOT the kid, but the disability–will tear the family up. Which will, whether you can see it or not, make the kid with the disability feel terrible, not to mention what it does to everybody else.

In working with children who have disabilities, we’ve begun to say that we need to be attuned to the needs and wants of ALL children, no matter how severe the disability seems. And that’s absolutely true. But in every case, even in families–no, especially in families–all children does mean ALL.

Which Came First, the Gift or the Disability: Does Twice-Exceptional Mean Twice as Lucky or Just Twice Bitten?

Happy July, readers!

My, it has been a long time! Frankly, I haven’t felt much like writing lately, but I was starting to miss the blog, and I did promise to finish my series on children who are gifted, their education, and issues related to giftedness. If you recall, the first two posts concerned whether “gifted” could be treated as a disability, and if so, what to do about that, and the disturbing trend of students who are gifted being used as perpetual tutors or junior teachers.

The post that follows covers a new facet of gifted education: what it means to be “twice-exceptional.” Normally, I’d pull out a dictionary definition here, but I don’t think I need one. That’s because I know quite well what this term means. From kindergarten to high school graduation, I was the “twice-exceptional” student–highly gifted in reading and writing, but with cerebral palsy tagging along after me whenever I went to school. And if you think having a disability is tough out there in “the real world,” try juggling giftedness, too. It’s a bit like being a mom of twins–two equally precocious, demanding, unique twins who you can’t see yourself trading because they are who you are, but still manage to run you ragged more often than not.

I know what you might be thinking–so, the giftedness was the “good” twin and the disability was the “evil” twin? No. As much as we would like to change this, I am reminded every day that unlike in novels, there are rarely clear-cut “good” and “bad” characters in real life. We’re all created in God’s image, and God is absolutely, infinitely good. He cannot be anything else. But, we also have free will, and we also sin. We were all born with, if you will, the ultimate disability–the sin disease. And sin is evil. It hurts people and property. It is the brainchild of the one sent to steal, kill, and destroy. Now, does everyone sin all the time? Are they defined by sin? With a few notable exceptions–those who chose to use their free will for the worst kinds of evil–no. And is everyone defined by goodness? Are we good all the time? Absolutely not. What that means is, our traits can be good or bad as well. Society would like to say disability is always bad, giftedness is always good. One is a tragedy, the other, a rare blessing. But each can be both at the same time, their roles can switch, or they can mesh with each other.

Let’s get personal for a minute. I want to tell you a little about my own twice-exceptional experience. As I said, I was a child who was gifted at reading and writing from an early age, and was also considered mature for a little kid. I distinctly remember having an easier time talking to teachers, even in first or second grade, than other kids. I would rather have hung around the adults and gotten one-on-one attention than moped around a playground full of equipment I couldn’t use. And yet, I could not tie my shoes–in second grade. I wrote stories and poems–on a computer, because kindergartners’ handwriting was better than mine. I had to ask classmates for help opening my milk carton at snacktime. I’m sure my teachers wondered, what do we make of this kid? But at the time, I didn’t realize any of this came from either a gift or a disability. It just was what it was, and I didn’t know why teachers and classmates made such a big deal out of it, like when a second grade classmate accused, “You think we’re all your servants and you’re the queen.” (As a lifelong princess fan, I had to admit, that sounded good to me, particularly if that snotty kid was one of the maids).

There were times, of course, when my disability was a huge pain, and yet, helped me out more than I expected it to. I’ll give you an example of a time when my gift–the “good”–and my disability, the “bad”–twin, seemed to switch places. I was in about the fourth grade, and despite excelling when it came to books and stories and the like, my math grades were abysmal. You are reading the words of someone who regularly got grades like 24 or 13–yes, 13–on math tests. My parents saw no reason for this other than my hatred of math, so I would get lectured or disciplined for the grades. But they never really got better–until my elementary school’s gifted coordinator stepped in. She and my regular teacher finally seemed to realize there was a disconnect, that the question was not, “Why is she so stubborn about math?” but, “How is such a smart kid failing so badly?” The disconnect, we discovered, was due to a lack of depth perception and trouble with “busy” formulas and figures, not to mention columns I couldn’t line up. This was something everybody had missed, because I already wore glasses and had undergone three eye operations besides, so my vision looked about as good as it was gonna get. Except, of course, that CP hit my eyes harder than anyone realized. And if I hadn’t had CP, I probably would’ve ended up being defined by poor math skills–among other negatives–placed in “special” classes, and certainly not on the cusp of finishing a second graduate degree. There, the disability was the good guy. My giftedness was still a treasure, but because it made me look like, as my father said, “a fourth grade genius,” it masked the truth when I really needed help.

At times, twice-exceptionality was, as Monk would put it, a blessing AND a curse. For example, when I was in eighth grade, I wanted to travel. Specifically, I wanted to go to a writers’ camp at a university five hours away. Did I qualify to get in? Sure–otherwise, my teachers wouldn’t have sent me home with the brochures. Could I actually go? Not realistically, my parents said, because due to CP, I hadn’t mastered certain independent living skills yet. For example, I got minimal-to-moderate help with bathing until my early teens. My perceptual problems might have caused major trouble at an unfamiliar place so far away. So again–a treasured gift, coupled with a disability that ruined things I really wanted to do. (Could we have worked it out so I was able to do those things? Perhaps–but maybe we weren’t thinking of alternate possibilities at the time, they didn’t exist, or I wasn’t used to questioning the absolute, “Disability = NO.”)

And at times, twice-exceptionality is exactly what it sounds like–a meshing of gifts and disability. But too often, twice-exceptional students are treated as if “and” has been replaced with “or.” Their disabilities are served–often through “special” help–but they don’t receive enrichment opportunities. In fact, some twice-exceptional students are barred from gifted education programs because the school system erroneously believes their disabilities–often learning-related, though not always–preclude their doing the challenge-level work.

I did an entire research proposal on this issue last fall. Researchers such as Winefield, Nincpon, King, and others reported that twice-exceptional students often experience self-esteem problems. They feel confused–like I was confused–because on the one hand, they’re told they’re smart. But on the other, they’re painted into the “disability” box, and we all know by now what THAT can look like. They wonder which one, if either, is their true identity. And some twice-exceptional children, such as ones with ADD or ADHD, grow up to have a poor quality of life–as if their gifts never mattered at all.

Forgive me. I know a smart lady like me is supposed to “get it.” But I “get” this about as much as I did high school geometry, in which I made a 75–bless my long-suffering teacher’s heart. “Exceptional” is a word that’s supposed to mean “good.” No, more than good. It’s supposed to mean the best of the best–those whose personalities, selves, and souls sparkle just as much as the rest, but whose sparkle is unique enough to warrant a few closer looks. Chocolate cake is “good.” Chocolate cake with moist insides, thick, dark frosting, and an ice-cold glass of milk is “exceptional.”

So, we call these children–these people–twice-exceptional. This doesn’t mean they’re better than anyone else. Remember, I said all selves and souls sparkle. But it is supposed to mean that these people have something unique and wonderful that not everyone gets to experience. Yet, these individuals, just like individuals with only disabilities, are treated as people who have no positive side, only a negative one. Yet another group of people to feel bewildered about, shuttle into “special” places, and forget about as soon as possible. “Exceptional children”–a term we should use for ALL children–no longer means “wonderful kids.” It means, “the ‘special’ kids who need to be monitored, controlled, put on “plans,” and in general, just endured.”

That breaks my heart, and it makes me mad. That’s true for any child with a gift or a disability–I don’t think anyone deserves that kind of attitude. But for those who are twice-exceptional, well, let’s say it’s twice as personal.

Do any of you know a twice-exceptional adult or child? (Not counting me; I mean, in your personal lives). If yes, think of this. These people truly are exceptional, because they know something very few of us ever will. They know what it is to excel, and what it is to struggle, often with something that has no cure or “quick fix.” They know what it is to feel triumphant, and what it is to wonder, why was I chosen to have this disability? They know success and failure can be wrapped in the same package–and oh, boy, do they know the value of effort in spite of past failures. They can reach people on both sides of the “disability” fence in a way few others can.

That’s pretty exceptional, don’t you think?