We talk a lot about the "disability community", and it makes sense to think of ourselves that way. There's strength in numbers, after all, and where disability rights are concerned, it's almost always true that the rising tide lifts all boats. But the experiences that we have with our kids and our loved ones are very different, as are our perspectives and our philosophies. Like snowflakes and unhappy families, we're all broken, and enduring, in our own ways.
If there is any one particularly great experiential divide in our vast community, it may be that between the visually identifiable and the invisible disabilities. It's the difference between a kid in a wheelchair and one who is ambulatory but fighting organ failure; between a child with autism and one with the subtle but identifiable physical markers of Down syndrome; between a blind person with a white cane or a service dog and a deaf person with no visible hearing aids or cochlear implants.
It's the difference between a world of unwanted pity, and one of unwanted judgment.
The public face of disability is different for the visibly and the invisibly impaired, but they both suck the life out of the parents and the children who deflect, and educate on the fly, and most of all endure. I wouldn't trade places with the parent of the child with CP or Down, but that's less about comparing monsters (always a fool's errand), and more about sticking with the devil you know. I've never heard a parent say "I would trade situations with that person in a moment", no matter how broad the disparity. In a very real way, our children's monsters become our own.
Those of us who live in the outside, typical world have a burning desire to understand everyone we see, to KNOW, as if entitled, whatever we think is important about the people around us. I'm as guilty of this as anyone. When we have that information, which we have determined is entirely our business, we can then come to conclusions about the people around us, again as if we need to. We do it to our fellow typical citizens, certainly. And we do it to the broken among us as well.
So when we see someone with an outwardly manifesting impairment, it's tempting to conclude that their lives must be less than ours. Less enriching, less meaningful, and of less value. And we extend pity, because in the absence of a narrative, we've inserted our own, one in which we surely must be better off that THAT poor son of a bitch. It's a pity that is unwanted, and probably unwarranted.
But what do we do when we see someone who shows no outward defect, no physical stamp, no twist of the body as if from the hand of a spiteful God, no sculpted story on their blank faces? What do we do when we are faced with the howling child with the seemingly permissive parents? How do we respond to the older child with a younger child's mannerisms or trappings? Or the little girl who spins and plays as she walks and who speaks, when she does speak, in an alien tongue?
A friend recently recently wrote about a website called Too Big for Stroller. The premise is simple. People take clandestine photos of children in public places who appear to be too old or too big to ride in the strollers. The assumption is that these kids are the spoiled brats of permissive parents. It didn't take much searching, particularly in the comments of NBC and Salon articles about Too Big for Stroller, to find the stories of the broken children.
Some had diseases that robbed them of energy, so the only way to even go in public was to have a stroller as a backup. Some were weakened by failing organs. Some had invisible conditions that left them fragile. One parent told the story of the child whose high-tech wheelchair had malfunctioned and whose insurance carrier wouldn't pay for a loaner. The only way for this child to go out was in a stroller. The alternative for these families is to stay inside, at home, hidden away, or to spend a great deal of money for a wheelchair, exchanging scorn for pity. You pay your money and you take your chances.
And yet, the number of people who felt entitled to make assumptions and judgments was deeply depressing. And not all, or even most, were silenced once the possibility of disability was put in front of them. Adele Melander-Dayton, author of the dismissive and frankly cruel Salon piece (which referred to the site as "hilarious"), tweeted that her piece was causing people to "flip the f out". When I responded with my usual diplomacy and class ("Yeah, some of those 'flipping the f out' probably get sick of their kids with disabilities being mocked by douchebag hipsters."), it brought out this response from an anonymous treat of a tweeter:
"Because ALL seemingly-too-big-for-strollers-kids are disabled, and we are all mocking them with hate speech, right?"
And that's really the crux of it right there. We're not even going to pretend that NONE of them might be disabled, or even most of them. But however many kids with invisible disabilities might be made fun of or hurt by that site, they are acceptable collateral damage, because some of them are probably lazy kids with weak parents, and they must be judged.
And again, I've been guilty of that same thing in the past. I don't know anyone who hasn't, although I sort of wish I did.
We look, and we search within our own world of experience for a template, a perspective that makes sense of people who might otherwise be perplexing to us. When we don't find it, we render judgment. In doing so, we find the troubled autistic boy to be out of control, and his harried mother to be an irresponsible parent. We declare the exhausted child with the failing organ to be "Too Big for the Stroller". We hear the child speaking strangely and judge the parent for allowing their eight year-old to engage in "baby talk". We see the holes in what we know, and we spackle them in with our own insecurities, disguised as judgment fairly rendered.
"Your daughter is a beautiful child. Does not look at all like she was born with anything at all wrong with her. You are blessed."
I received this comment in an email just yesterday, from a very nice person who is reading my book. And she's right, we are blessed.
Schuyler is a beautiful child, much more so than any casual conjecture about my own genetic materials might suggest. She's beautiful, and she's unfailingly kind, and she loves with every cell of her gigantic heart. It's undeniably a blessing.
A blessing, but also sometimes a complication.
Schuyler has had teachers who believe in her, teachers who have worked hard with her for year after year. Her special education team has been tenacious on her behalf; her therapists equally so. We're confident that this will continue with her new team next year. As with any child, atypical or otherwise, the first step towards reaching Schuyler is understanding her. Understanding how she thinks, how she processes information, what she already knows, and how she can be reached.
But what of those who see her but don't understand? What of those mainstream teachers who may see her as a puzzle they never asked for, a challenge they don't wish to step up to? Someone else's job?
Early this year, we met with Schuyler's mainstream teacher, the one who was to teach her science and history and social studies. We expressed our expectations and our hopes for Schuyler. Even then, her response was to lay out the lecture-based plan she uses to teach, and when we expressed our concern that Schuyler might need extra help since she is such a visual learner, she replied that she probably wouldn't have a lot of time to do that. So we knew we were facing some challenges, and the year bore that out.
But at Schuyler's IEP meeting last week, when it came time for this teacher to give her report on Schuyler's academic progress and the work they'd done during the preceding year, she said that she hadn't really had the opportunity to get to know Schuyler all that well, but she was always affectionate and funny, and she did a great job of cleaning up after herself at lunch and was an enthusiastic helper in the classroom.
That was it.
Not a single word concerning academics, about how Schuyler learned in her class, or what this teacher did to help make the material accessible or what accommodations were made. The teacher seemed entirely unaware that she was even expected to teach Schuyler anything. From my admittedly very biased perspective, it was as if the concept of inclusion meant that Schuyler had a right to be parked in her class and to watch the other students, the REAL students, learn. Inclusion appeared to mean being a face in the class photo. Equating equal treatment with fair treatment sounds absolutely right, but that's only true if every student in your classroom has the exact same needs, and of course they do not.
We were shocked, and we were deeply, frustratingly and furiously disappointed, but we weren't surprised. We had been worried all year about this teacher, and we had reached out to try to help her, but in the end, she looked at Schuyler and seemed to see a lovable class pet.
A week later, I remain baffled by how this went down.
I guess it's easy to look at Schuyler and miss the peril she's in. It's easy to look at her and miss the monster. She's a pretty, energetic little girl with a winning personality and not an ounce of guile. She remains innocent to the point of naiveté, which is charming in some ways but also leaves her vulnerable to the world in a way that her outward toughness conceals. Schuyler's positive traits are so strong that her disability really can be invisible, unless you take the time to see, to really see, and to understand. When you do so, and when you project into the future, when she'll be just as far behind and just as in need of help but no longer a cute little girl, you can see just how badly she is wronged by faint praise and academic neglect.
In the absence of that understanding, it's easy to create your own narrative for her, and for us, I suppose. I know that for my own part, I can come across as a one-note tune, and something of a scold. I don't like that about myself, at all. But the thing that Julie and I have become acutely aware of this year, particularly recently, is how much depends on us. Recognizing how nice and pretty and cute Schuyler can be isn't advocacy. It won't save her.
Looking at Schuyler, it's easy to miss her monster. But it's there, and in some ways that matter a very great deal, it's winning.
36 comments:
Yep. I have one of each. A child with an obvious disability, and one with an invisible disability. The challenges overlap as much as they are widely divergent. And both are amazing kids.
It's always amazing to me how snotty people can be, without asking any questions. I've been on the receiving end of these kinds of comments unthinkably many times in the last 20 years living with a couple of rare, chronic illnesses. My life looks so normal except in a couple of ways, and those couple of ways trigger such odd reactions, reactions that surprise me every time.
When people ask how I decide when to disclose my (mostly) invisible medical issues, my response is, "I do so as soon as my behavior looks strange to someone who I have to continue to interact with." Because people jump to conclusions, people assume I'm ignorant of rules, people assume I'm being stubborn or unreasonable or whatever. All because I have to bring water into a theater, or something like that! Seriously??? It's never the workers at the places who make a fuss; it's always the other patrons. Why it never seems to occur to any of them that a person MIGHT have a medical reason for their behavior, I do not know. Perhaps lack of exposure to people with medical problems? But, man oh man, my life would be easier if people just asked a question.
I'm curious how the other members of her team responded to the mainstream teacher who obviously did not do her job. In our school system, the intervention specialists spend time in the mainstream classroom working with the kids, which allows them to get the help needed while in the mainstream setting. It sounds as though that wasn't the case for Schuyler. I feel angry when I hear about situations like the one you describe, where a professional refuses to act in a professional way and children are harmed in the process. Wailing and gnashing of teeth is usually what I feel like doing, though that seems to do no good. A well placed letter to those supervising the teacher, however, may have a whole lot of weight. Not that it can possibly change Schuyler's experience, sadly.
"Monsters are real, and ghosts are real too. They live inside us, and sometimes, they win." - Stephen King
I love this post for so many reasons. My daughter has Down syndrome and when people stare I assume it is because she is the most beautiful child they have ever seen. I've been known to tell people not to worry that they can't catch it. I've also been know to say to the stalkers that I know she is beautiful. However, the best part of your blog is the IEP meeting. We have been fortunate to have mostly teachers who really do try to teach Rachel and kudos to them. But most all of us who have kids with IEP's have experienced something similar to what you described. I literally laughed out loud when I saw that part of your post. I had a resource teacher tell me once that she had no suggestions for how to modify the curriculum. I did make a friend with a son with autism who had some pretty serious behaviors that said on a parent panel that having a child with a disability makes you less judgmental. You don't assume the kid in the grocery line who is having a meltdown has a "bad" parent anymore. She is right. Thanks for sharing. I love reading!
Inclusion without the proper supports for the child and the teacher is just mainstreaming with a trendier label.
The teacher has to teach your daughter, but if she doesn't know how, she isn't being supported. Someone should be helping her learn how and do it, and she should be held accountable.
This is really not negotiable. As someone recently pointed out to me, when our world is a segregated place, and our kids can shop at the special markets and pick out books at the special library and mail at the special postoffice, then we can accept the idea of special placements. But until then, they live in the same world everyone else does and deserve to be treated as such.
How dare the teacher just softball this off? How dare the school not support her until she did teach Schuyler?
(Can you tell I am fighting the same fight at the moment?)
Stay strong, Rob.
Hi,
I've been reading your blog for the last year. I am a mainstream science teacher in a high school. I have students like Schuyler in classes that are called "collabs". I can either have a special ed teacher with me 5 days a week, 3 days a week or just as a consult after class. It is the job of the special ed teacher to help me modify all work for IEP'ed students. Class activities, homework, labs, PowerPoint lectures etc. If Schuylers teacher is not following her IEP then you need to make it clear to the administration that it needs to be done. It Connecticut it is illegal not to follow the IEP. If the teacher is not getting support from the Special Ed teachers than that needs to be rectified as well. Unfortunately, many mainstream teachers are not schooled in these types of modifications. They NEED the help of the Special Ed team.
I can't even tell you how many people will look at my son after hearing about his neurological issues and say, "Oh, but he's SO CUTE!"
I know that these people mean well, and they're probably just struggling to find *something* nice to say, but how am I supposed to respond to that?
Holy shit, you nailed it again! We just finished out our year with an identical mainstream teacher. Christ, I hate her guts.
I understand your point and I agree with you, but every one of the kids on the toobigforstroller website is literally falling out and physically too big for the strollers.
First of all, I've seen the site, and that's simply not true. More to the point, however, how is that relevant, even if it was true? Disabled kids grow, too.
It never occurred to me to look at other kids in strollers, etc....why? WHY? would you care? I have two children with no atypical issues regarding their development, who sometimes are just tired/lazy and don't want to walk. And I do, so I dump them in their stroller and off we go. Or, we have a long day planned and the stroller comes along, for occasional resting, or for putting backpacks and towels in. Development issues or not, use the damn stroller if it makes your life easier! And especially if it's in lieu of starting up the CAR. Sheeesh.
Rob, This post made me cry, for various and sundry reasons. I have an older daughter, 14, with autism, a typical pre-teen gal and a 8 year old gal who has Type 1 diabetes. There's a lot of hidden and not-so-hidden variables in our daily lives. There's also some stroller/chair use. I cannot believe the website and the pictures on it, cause I will probably be on it one day and there will be comments and a big white circle with WALK over my child's face. And it already made me cry.
Why? Cause you know what, life is hard already and then there are people like this actually trying to make it harder for me. Do they think it's easy to push a 14 year old in a stroller or other chair after she decides that she has 'had enough' walking for the day, but you are in the middle of a freakin' amusement park, 2 miles from the car? Is it easy to tell your child with diabetes who is having a low blood sugar and needs to sit and drink a juice and not feel so dizzy and out-of-sorts to sit down in the stroller/chair and be pushed, so that the rest of the family can continue the outing? You know what, it's not easy at all. And the last thing I need is people judging whether or not they 'think' my child is too big or should be walking on their own.
Rob you write so eloquently about the challenges facing all of us with children who need different things. Those of us with children who are broken in some way, visible or not, need more acceptance and less judging. Every one of us has a story.
As for the teacher who actually didn't teach, I am so sorry about that, for you and for Schuyler. It is unacceptable on so many levels. I wish you well as you continue fighting for Schuyler.
I would love to be a fly on the wall to hear what the teacher says about the other students in her class - may not have been much more insightful.
Chances are she is just a shit teacher who didn't teach anyone well. Or, if she's not -then she hasn't had support to help her but has failed to ask for it (or demand it) ...hmmm back to my shit teacher stance.
We work on the basis we don't expect our son Mac to get a better education than other students, he has just as much right and likelihood to get a crap teacher as the next kid. But I do expect him to get an equivalent education with the necessary supports which he is funded for.
It's not that I think she should get away with it, I am not sure what methods for redress you have in the USA but here is AUS it is very clear 'all teachers are not born equal'.
We have been lucky so far but are only 2.5yrs in to our school journey so sure have a change of fate at some stage.
Oh, and we have the very clear, visible disability which is, I believe, so much easier most days... but for a potential smirk you might enjoy this wee tale... http://inkyed.wordpress.com/2010/05/04/weekend-at-bernies/
I read your blog because it opens a window into a world I would have no experience with otherwise. Thank you especially for this post and the awareness it's teaching.
"Disabled kids grow, too."
Exactly! And those extra large strollers designed for children with special needs are very expensive, and not everyone has insurance that will help cover the cost.
My son Max is almost 8 and is reaching the upper limit for even the larger the standard strollers, but his need for a stroller is not going anywhere, not anytime soon anyway.
I took a look at that site and was really flabbergasted by the above-normal amount of cruelty and idiocy. Which is saying something, given all there is on the internet. Having read some of the commentary by the person who runs it, I was torn between hoping she is never so lucky to have a child and hoping that it puts her through the wringer (cruel and wrong myself, either way, I know). Honestly, even if those kids were all completely neurotypical and healthy, it's not strange to put them in strollers. Depending on the type or length of a trip, even the most active child can be too slow to walk, or get worn out. And it takes a special kind of asshole to hear, over and over again, "a bunch of these kids might have disabilities or be unwell" and still insist on judging. Because there's nothing better to do with your day, I'm sure.
I had the same reaction as Siobhan Wolf above--I wondered what the other people on Schuyler's team said about her mainstream teacher's comments. You have to try to teach her, you have to make *some* accommodation.
Your post about the mainstream teacher was just infuriating. Unfortunately, there are teachers who believe it is their job to provide information, and the kids' job to learn it... which is substantially different from *teaching.*
I have a neurologically typical child. We changed school districts due to a cross country move, and she has been B-O-R-E-D out of her mind all year. When I approached the teacher, she said "really? but she's so well behaved!" This went on all year. I almost wanted to tell my 10 year old to act out a bit so the teacher would pay attention to her :-)
I was constantly told "don't worry, she'll be ready for 6th grade," or "she'll still do well on the state tests." Ummm... but what about TEACHING her something?
I am so sorry that this bad apple didn't address Schuyler's needs. Hopefully the IEP team took note, too.
I feel so small when I read some of your entries. You constantly remind me of how limited a view I can sometimes have and how I must continue to reevaluate how I see things. You are not one note.
This post makes so many great points. I feel enlightened after reading it. I had not seen the too big for stroller site but maybe I would have initially thought it was funny. I wouldn't have even thought about hidden disabilities. I also learned so much about reading what you wrote about saying the word "retard". I have started challenging people who say it around me. Now I will do the same about too big for stroller. You have such a great way of bringing your thoughts to light in a logical and yet still very feeling way. Thank you.
Speaking as one of the idiot parents who feels that her son is a gift from God and also has her child medicated to within an inch of his life (as you've stated in previous posts), I find it amusing that you think people should be beyond common human nature and intent with your daughter and that you seek solace in the completely broken American public school system.
The stroller website is horrible. But so is criticizing other parents of children with disabilities that you know little of and belittling other's religions beliefs.
Huh? When have I ever criticized a parent for medicating their child?
Another commentary that borders on poetry in its eloquence and perception. Thanks!
Now that you mention it, I do recall strangers commenting in a judgmental way when my son remained in a stroller past the usual age for walking. Had forgotten all about that, because getting him upright and walking normally was a watershed experience in our lives. Of course, that achievement in no way spared us from receiving other unhelpful comments.
My wife used to worry so much about inspiring the world to accept our child. She ordered the cutest possible clothes for him from the most expensive catalogs.
But people on the street are not the same thing as supposedly professional educators. Your scenario with the mainstream teacher is unspeakable, and yet I’ve seen enough to believe it’s more often the case than not. (A one-on-one aide for Schuyler might be a defense, although it would also make her stand out more and perhaps is not feasible.)
It would appear that, most of the time, we parents are on our own in protecting our kids’ interests, to a far greater degree than we dare believe. It makes no sense to turn our backs on the professionals (which my family did), but continuing to come back to them for more of the same is like sailing directly into a headwind, even when armed with determination, knowledge of our rights, and similar resources.
Continuing to make the case, as you do, is the only path forward I can see.
Meg,
I found what you're talking about (I believe I was speaking of Western attitudes toward kids who are different versus other societies) , and I'm sorry for giving the impression that I'm critical of parents who treat their kids' disorders with very necessary medications. It certainly wasn't intended that way. It was a clumsy way of making the point I made, and I apologize for the insensitivity.
As for the rest, I stand by our choice to educate Schuyler in the public schools, which for all their problems are nevertheless the best and only option for a lot of families, including mine. And I stand by my choice not to raise Schuyler as a Christian because, well, I don't actually have to defend that position.
I guess you can email me if you have more to say about it.
I've enjoyed your writing for many years. You've gone from a smartass to a person who recognizes the nuances of life. It amazes me that I've been reading your writing for 15-odd years. Thank you for exposing me to a situation that I had not yet encountered or experienced or thought about. You're absolutely right, we do have a sense of entitlement about knowing others' situations and making judgments, often unfair and superficial ones. You are absolutely correct that children who appear to have outgrown strollers may in fact be "broken" in some visually unapparent way. We as a judgmental, nosy society should mind our own business. That's the solution, I think. There have always been people who take it upon themselves to castigate strangers for perceived wrongs, but it really seems to be a pathological nosiness. It really isn't anybody's business.
I just discovered that despicable website (and Facebook page) earlier today and am still considering putting together a petition concerning it. I researched the TOS for Facebook and for Tumblr (who hosts the site) and both have specific requirements against hate speech. Of more interest is the idea that they are against the intellectual property, including photos, of individuals being shared against their wishes, especially when children are involved.
I need to find the sites where there are some personal stories, but I just haven't yet, because this is us. I have three guys with low muscle tone and other issues and we've gotten the strange looks because they're in a stroller (I've not-too-nicely told them that my kid's adorable but it isn't a crime to be in a stroller). I hate that folks find the need to constantly judge those which they do not understand.
I didn't blog about this myself, even though I am infuriated, because I have read so many wonderfully-worded posts like yours, which eloquently state the facts, the reality, that so many of us live with when we have a special needs child (or children).
Great post, and absolutely on point!
Rob, as much as we disagree on some things, you never fail to educate me. I am ashamed to admit I have often looked at the kids in the store, the ones too big for the stroller/shopping cart, the ones with the pacifier/thumb/bottle still in their mouths at too old of an age, and I was always quick to judge the parent or the kid in my mind. Unless there was a visible sign of a disability of some sort, I almost always thought either the parent or the kid were just plain lazy. That won't happen again. Thanks for the post.
Thanks for this, once again. For summing up the mixed bag that inclusion can be. As the parent of a perfectly adorable boy with generally good manners and autism, I am very aware of the risks that lie ahead.
He is forever at risk of being "managed" in lieu of being educated. I'm on the watch for it. You're right, you can pretty much see it coming in the teacher, and pretty much unable to do a damn thing about it at the time it needs to be done. We're stuck with looking back, saying "I knew it. Damn it. I knew it."
In thinking about the stroller thing I realized that I take my 4-year-old son (NT, no physical issues at all) to preschool every day in a double stroller, just a couple blocks, with my 2-year-old daughter and their bags o' school crap. I got to thinking, why doesn't he walk more often? --so yesterday I asked him if he wanted to. He definitely did, and then my daughter wanted to walk because her brother was, and she's slow, of course, and needs her hand held, and I had to keep on asking him to wait for me so he didn't get run over in someone's driveway, and there's still all their stuff to push in the stroller... so, yeah. That's why they ride to school, in probably the simplest, least complicated situation there is, with no physical issues. (I'm in the small burbs, not NYC, so sidewalk space isn't an issue, which seems to be a big thing for the blogge; maybe that would change things for me, maybe not.)
I continue to think a lot about your comment that we *must* judge. It is so spot on, and has me thinking a lot about my own behavior.
You continue to speak up and I appreciate it so. It does get tiring I know, always defending, pushing, making people aware. I guess I keep doing it too, because, well, it needs to be heard.
A few years ago, back before Max had any kind of diagnosis, the topic of big kids in strollers came up in a livejournal parenting community I belonged to. It amazed me how many people were convinced they could spot whether a kid had a disability from twenty paces in a crowded mall.
I'm not at all surprised by the stroller website. I haven't seen it, but there's another similar group over on Flickr that posts pictures of "fat people at Disney World". Same concept, they don't ask.
I recently had a large fatty tumor removed, but before that I spent years cringing every time I went to the grocery store waiting for the "helpful" person who would decide I did or did not need to purchase what was in my grocery cart. Or the people who would laugh and point (often parents with little children). The Flickr group had the same kind of comments.
My son has had teachers like your daughter's- the ones who stay at the IEP for five minutes and leave saying I really don't deal with him that much during the course of the day,etc. This year we were lucky to have a mainstream teacher who cared about him and actually sat through the whole IEP, asking questions and telling me about a plan he had to reward good behavior when he was in the regular class. He really went above and beyond for us this year. I really agree with what you said about how there are kids with visible and invisible disabilities. My son has epilepsy and severe cognitive disabilities but you wouldn't know anything was wrong just by looking at him. We have gotten stares and rude comments when he gets out of control in public or starts touching everything,etc. People see him and think that boy is too big to be acting that way,(he is almost 10.)It saddens me how some people are so quick to judge you as a parent when they don't know what your situation is. I really enjoy reading your blog- keep up the good work!
I have many thoughts on the writer of the website TooBigforStrollers, but after calming down a bit, my number one thought is that she just doesn't get it. She doesn't get that she shouldn't be judging these parents whether the children have a disability or not. Because she doesn't have children, she hasn't had to feel the judgement of choosing to breastfeed or do bottles, the judgement of co-sleep or cry it out, the judgement of public school or private school and so many many more. As you said, none of us are perfect and we all judge others occasionally, myself included unfortunately. But hopefully one day she will have children and maybe will just judge a little less.
One more question, is it legal to take and post pictures of children on a blog without their parents consent? Many have their faces covered with "walk" but some with their faces clearly showing?
Thank you for writing this. I wish more people would open their eyes and see with their hearts to understand the world that so many of us are in with our special needs children. My daughter wants so much to be one of those running everywhere right along side of her siblings. But she can't. I wish people would understand these things.
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