Broken Phantoms: understanding visually identifiable and invisible disabilities

Guest post by Robert Rummel-Hudson
Robert and his daughter, Schuyler, who has a rare neurological disorder called bilateral perisylvian polymicrogyria. Photo by Robert Rummel-Hudson.

Those of us with disabled children 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 than 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.

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.

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 up 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.

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.

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.

This post originally appeared on Rob’s blog.

Comments on Broken Phantoms: understanding visually identifiable and invisible disabilities

  1. I think one of the problems with the “invisible disability” is that even I (a mother of a child with autism) sometimes fail to register the disability, for better or worse. There have been times when I have expected my child to act “normally” in a mainstream setting, forgetting myself that just because he looks like everyone else, he is not like everyone else. Confronting these unrealistic expectations has allowed me to move forward, and I couldn’t be any prouder of my son. Still, I think the invisible disability is challenging for a multitude of reasons…not only do we sometimes feel compelled to “educate” the public regarding our children’s disabilities, we sometimes find we have to quietly educate ourselves.

  2. I read your book about a year ago when I was working in a special education classroom, especially with non-verbal kids. Soon I’ll be throwing myself into three years of Communication Disorders and Sciences to do more of the same with a degree!

    I don’t have kids yet, but I did child care for one of my students with autism. I worked very hard with her outside of school, and we made a lot of progress especially with her reading, but I was still hypersensitive to looks from people when she would…be autisic when we were out. I made a point to take her to things where there were lots of other kids, and I loved when they came up without fear and asked “Why does she do that?” “Why does she need a helper?” because it was a chance for the other kids to grow up a little more tolerant. My cousin befriended a boy with autism when he was young and had a stepbrother with a bone disorder who used a wheelchair, and I think he’s a lot more tolerant of differences because of it.

  3. My daughter was recently diagnosed with autism spectrum disorder and at four years old she’s barely speaking. I’ve got funny looks when she kicks off in shops, resturants and at school. I think attitudes are changing and people are more understanding that they used to be, but it’s still a long way off from acceptance.

  4. I’m a teacher with an invisible disability so I guess I have two perspectives on this. I’ve had rheumatoid arthritis since age 18.

    There’s a kid in my school with Juvenile rheumatoid arthritis (JRA) and he isn’t exactly well behaved. He screams a lot and complains a lot and hits out at the other kids. But when my RA was bad (at 18!) I screamed a hell of a lot more than him and I was asking doctors to just kill me because I couldn’t cope with the pain. At age 4, how could he not scream when he’s in pain.

    His current teacher really doesn’t understand this. But I honestly don’t blame her. It’s the system that has it all wrong. She has no extra support for this child, no expert advice, little time to do her own research about his problems and those of the other 30 kids in her class. Most off all she’s been offered no training/teaching about his condition and has no support in this from senior management or the government.

    I have gone out of my way to support a child in my class with hearing difficulties but was given no information about him from doctors. They refused contact. I have been given no extra support for him but I have tried my best to learn as much as I can about his condition and support his learning. I know I given him everything he deserves and I feel awful about that, but I feel like teachers just aren’t given the support.

    I try my best to educate anyone who’s interested about RA as it’s what I know. Although some people are just not willing to learn, including some of my family members!

    Good luck everyone.

  5. I hope that your post is widely read. It is well written and a very good reminder for all to judge favorably and to speak kindly. We never really know what challenges another is facing, how much someone is struggling.

  6. TY so much for writing this! My 12 yr old little girl is a beautiful perfectly “normal” looking 12 yr old, however she is functions at a 5 yr old level and has a very low IQ. She is very good at mimmicking behaviors so she can fit in for short periods of time with her peers. She goes to Jr high this year and i am so scared for her…it is always nice to know we r not alone!

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