Broken Phantoms: understanding visually identifiable and invisible disabilities #Offbeat Papas#Tough Stuff#big kids#disability#grown ups#special-needs#stroller June 20 | 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? Does my special needs daughter really eat lunch alone every day? It began with a simple question at the grocery store last night. We were choosing all the pieces for Schuyler's lunch and were trying to... [more] 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. Reporter Name * Reporter Email * Original text Enter the original text here. Edited text* Enter your suggested copyedit here. Notes You can add a note for the editor here. * Required information. Fix Typo Robert Rummel-Hudson Robert Rummel-Hudson is the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008). He blogs at Fighting Monsters with Rubber Swords. http://www.schuylersmonsterblog.com PREVIOUS BabyList offers an offbeat spin on the traditional baby registry NEXT How can I make it easier to be away from my child for a few days? Toggle comments [ 37 ] I am not a parent but I just wanted to take a second to applaud you for this. I am an audiologist working for a school system and I frequently find myself battling this with general ed teachers and other school staff in regards to our students with hearing loss. I cannot tell you how many times I've had to reiterate that a student is not inattentive/lazy/poorly behaved/unmotivated/a slow learner/etc but rather that they are having to work twice as hard as their normal hearing peers to function in the classroom even with amplification. Even when there is some visible sign of a disability like hearing aids or cochlear implants, you'd be amazed at how little understanding there can be from some people. 4 agree "It's the difference between a world of unwanted pity, and one of unwanted judgment." this. 17 agree It is so hard to get people to understand how a seemingly normal child can have a severe disability. My kids were adopted from a severe neglect/abusive birth family. When they came to live with us they were not potty trained (at4&5) and the youngest was thought to have autism and a chromosome disorder. They were weak and could not walk long distances grocery shopping was a nightmare for them so using buggies with seats or strollers made it possible for them to go to the store and to other events. With lots of therapy and love they are now working getting closer to being normal for their age. But i remember getting lots of dirty looks and comments. 1 agrees Thank you so much for writting this way. My daughter is visually impaired and quite possibly disabled in other ways as well (which we are still trying to identify, shes 4) and special needs preschool and IEP's and all of it has been so immensely difficult and frustrating. This gives me hope, not because i think it will ever stop being frustrating or difficult,but because there are others out there trying just as hard. Fighting just as many battles and surviving. giving up is not an option and i needed reminded of that. 0 agree Amazingly written. I am putting one of the paragraphs on a sticky note in my cubicle. 0 agree As I was reading this post, I knew I recognized your voice – one day, while I was pregnant with my first child, I sat down and read your book cover to cover in one sitting. I was having all the normal first-parent fears of "what if my child XYZ?". Reading your book helped me find the strength to accept whatever child was about to come into my life. Thank you. 2 agree I loved this post. It made me realize that by laughing at that stroller site–which I shamefully admit that I did–I wasn't thinking AT ALL. Thank you for making me remember and think about the deeper, more meaningful picture. You are a lovely dad to a lovely girl. 3 agree As a teacher, let me say I am so sorry that you had to encounter someone in my profession who has forgotten or never learned what it means to truly teach. The reward of teaching should be seeing the students who struggle with school because of disabilities or language barriers or illness succeed because you researched and tested, reached out and planned with parents and support staff, and figured out a way for them to each achieve what they were capable of in your classroom. I hope your daughter finds a true teacher next year! 5 agree As a special education teacher, I hate to acknowledge how correct you are that far too often other teachers and administrators do consider "inclusion" to be "allowing" more disabled students to be in the same room as more typically developing peers. I teach students with moderate/severe/profound intellectual disabilities and autism, and I frequently have to fight just to get my kids into elective classes. Unfortunately (or maybe fortunately?), I can't entirely blame the other adults in the building. School, even a middle school like the one I'm in, has become too much about criterion referenced testing, AYP, and standings, and not nearly enough about experiences. This leaves educators with little to no time for non-structured curriculum and means that even those 'elective' classes (like art, health, chorus) have become about the grades and general ed students can't work with students like mine because they need to keep those grades up. My students get stuck sitting with a parapro at a table (typically at the back of the room) where they work puzzles or look at books if the class assignment is not something easily modified for them. I'm sorry for the experiences you've had and am afraid that too many other parents of children with special needs have had similar experiences. Best wishes to you and your family in the future. 3 agree This reminds me of an experience my brother had in junior high: they had a boy with profound physical disabilities who used an electric wheelchair in his PE class who they would have "run" races by pushing the stick on his chair. What exactly was he meant to get out of that? 1 agrees my son has autism and i can relate completely. i have had teachers like that that just seem to think their job with my son is to just get him through the year and nothing more. my son, if worked with, is capable of so much more. he is almost 12, past the age of being that cute, awkward, little boy. now he is expected to act 12 and he doesn't. over the years i have gotten the looks, the comments, and the opinions. it gets tiring, frustrating, and depressing. i get tired of explaining autism and him to people. i learned to ignore it for the most part. i have the same worries and the same fears as you. and as the future gets ever closer they become worse. what will happen to him after i die if he doesn't look disabled?? who will take care of him? 2 agree my advice to parents of children with special needs: put together a notebook/scrapbook/shoebox with EVERY piece of information needed for someone unfamiliar with your child to be able to walk him/her through a typical day… include Dr's information, medication schedules and where the meds are located, teachers/friends/family members names and phone numbers or email addresses, bedtimes, bathtimes, meal times and preferences, favorite movies/games/books/songs. Seriously ANYTHING that would help someone take care of your child for a day (or a week) in case of extreme emergency. Providing a condensed list like this (knowing meds can help teachers understand possible side effects like behaviors, drowsiness, etc; and knowing your child's preferences helps teachers reward your child in ways that the child will respond to) to your child's teacher at the beginning of the school year will also help the teacher get to know your child a little better. 6 agree oh boy can i identify with this one! my brother has downs syndrome and my daughter has severe ADHD & ODD and Anxiety. Which one of these two do you think gets understanding and sympathy and which one gets called 'a brat'? i've told my mother for years she got off easy because people look at my brother and are immediately understanding because they can tell his issues by looking at him. but when my daughter is having a 4 alarm meltdown at a store, i get nothing but mean glares at best and nasty comments at worst. my daughter looks normal so people think she is. until suddenly she's not. and then their knee jerk reaction is to think that i'm a bad mother. And that Salon article? i think it takes a pretty miserable person with staggering low amounts of self esteem to build a website devoted to picking on children and their parents. don't kids gets get enough of that from their peers at school? thanks for addressing this issue! it's a HUGE one for me! 2 agree I am a secondary English Education major currently taking a class on inclusive practices for ESE students. I forwarded this post to all my classmates and professor. I pointed out that it is important for us to see the parental perspective on this subject. I have a hard time understanding why any teacher would treat you as the one mentioned did. It makes me wonder why she became a teacher in the first place. You may want to site to the administation at the school that the INTASC principles we are taught as education students are not being used by this teacher. Here are the principles: Principle 1: Making content meaningful The teacher understands the central concepts, tools of inquiry, and structures of the discipline(s) he or she teaches and creates learning experiences that make these aspects of subject matter meaningful for students. Principle 2: Child development and learning theory The teacher understands how children learn and develop and can provide learning opportunities that support their intellectual, social, and personal development. Principle 3: Learning styles/diversity The teacher understands how students differ in their approaches to learning and creates instructional opportunities that are adapted to diverse learners. Principle 4: Instructional strategies/problem solving The teacher understands and uses a variety of instructional strategies to encourage students’ development of critical thinking, problem solving, and performance skills. Principle 5: Motivation and behavior The teacher uses an understanding individual and group motivation and behavior to create a learning environment that encourages positive social interaction, active engagements in learning, and self-motivation. Principle 6: Communication/knowledge The teacher uses knowledge of effective verbal, nonverbal and media communication techniques to foster active inquiry, collaboration, and supportive interaction in the classroom. Principle 7: Planning for instruction The teacher plans instruction based upon knowledge of subject matter, students, the community, and curriculum goals. Principle 8: Assessment The teacher understands and uses formal and informal assessment strategies to evaluate and ensure the continuous intellectual, social, and physical development of the learner. Principle 9: Professional growth/reflection The teacher is a reflective practitioner who continually evaluates the effects of his or her choices and actions on others (students, parents, and other professionals in the learning community) and who actively seeks out opportunities to grow professionally. Principle 10: Interpersonal relationships The teacher fosters relationships with school colleagues, parents, and agencies in the larger community to support students’ learning and well being. link 3 agree Thank you so much for writing this! My son is developmentally delayed from an accident at birth and is almost two and still not walking or talking much and I get stares and questions all the time! It makes me so sad that they can't see past that and see my awesome son for who he really is! 0 agree I'm an Speech Language Pathologist and find this poignant and truthful to the core. Though I work with traumatic brain injury patients, this article is so applicable. Thank you. 0 agree Thank you for this article. I found Dr. Richard Lavoie's "How Difficult Can This Be?" F.A.T. City Workshop to be an eye-opener as to one particular invisible disability. As Dr. Lavoie said, fairness does not mean everyone gets the same, it means everyone gets what he or she needs. 2 agree F.A.T. City is Amazing, and I highly recommend all educators and parents watch it. 0 agree I also want to thank you for this article. My son is autistic, but is hyperlexic and extremely verbal, so he initially appears very normal. Now that he is approaching his teenage years, it has been even more of a struggle to get people–even teachers and school administrators–to understand that they simply can't expect him to respond to certain things like a "normal" kid. 0 agree Even for not so severely disabled children, I feel like the system is letting them down. What starts as an ignored, developmentally delayed child in elementary school becomes a child so far behind her peers in middle and high school that she can only hope to graduate by sitting quietly in the back of a classroom, and that does nothing to prepare her for the real world or possibly higher education. I know this article wasn't just about school, but the failings of our public school system is one of my Big Things. Thanks for taking the time to talk about the Big Things, both here and on your blog. 1 agrees This is an amazing article, thank you so much for posting it. Education is so, so important in the quest for equality, whether it's kids growing up in poverty and wanting to escape it, children with a strong lack of support at home or children with disabilities. I find it so incredibly sad that a teacher should be unable to understand the difference they could make. 0 agree I was an autism one-on-one aide for several years and I can testify that most of the general ed teachers my students were mainstreamed with really resented having to do any extra work for my student, so it was on me to make sure they were included, not just allowed to sit and watch but to get a turn to speak, even if it was just grunts or humming. I had teachers who did nothing whatsoever to discipline their typical students for teasing or ridiculing my student, as if the kids had a right to do so. But I also had teachers who let me call the shots as to what my students should be allowed to try, and who encouraged the typical kids to ask me any questions they needed to ask.To teachers like those, I say THANK YOU! 0 agree Thank you for this post. I work with people with disabilities and see so often the stigmas around people with invisible disabilities. Even within disability communities you can find an assumption that 'real' disabilities are something you can see. Even in the organization I work for I often hear comments such as "make sure you can see the disability of the person in the photo"! 0 agree Thanks for this post. I have a disability as well, and while I understand what they mean, it is hard to hear, "Oh, you don't even look like anything's wrong with you." Or there are the glares at the parking lot handicapped spaces. 0 agree I have a friend with a disability who struggles with this a lot. "But you look NORMAL. It looks like there isn't anything wrong." That's when she deftly replies "Well, I also suffer from a very severe allergy to busybodies & judgement, so you'll excuse me if I need to go now. You're making me feel ill." 2 agree I feel for you! My brother Kevin is disabled and I cannot tell you the amount of times he's been ignored/not given the best treatment because he is very quiet kid. If she had a behavioral issue the teacher would waste no time in bring it to your attention, but because she's quiet and will sit still they just brush over them. We had one special ed teacher that ignored him getting picked on because "he didn't come and tell me about it" even though she witnessed it more than once! He has a communications issue. Also when the school wanted to just put him with the ESL kids (which was located in a windowless room by the janitors closet). 0 agree Ahh the school system. What if we had not just less kids inj each class but how about twice, that's right twice the number of teachers we have now. We want the schools to do so much but can't seem to come up with the money for it. How about school pyshs have 1 school not 3. How about we stop depending on the absolute amazingness of most teachers to do one of the most important jobs that we make one of the most difficult. 1 agrees Thank you for the reminder. Judgement is never appropriate… but especially when we are unfamiliar with the circumstances behind a situation. I forget that too often, and appreciate a gentle reminder (lest I be forced to learn after a brutal one, as Mother Nature sometimes does). 0 agree Wow. This is a great post. 0 agree 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. 0 agree 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. 0 agree 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. 0 agree 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. 4 agree Brilliant article! You put into words so much of it and I just want to quote nearly every sentence to everyone I know. 0 agree This was a great piece, and I really appreciate OBM for running it. It gives me a lot to think about. 0 agree 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. 0 agree 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! 0 agree Comments are closed.