Thursday, July 1, 2010

Read This Book.

I recently read this book and it made quite an impression on me.

In a nutshell, it's a memoir by a guy who, in early childhood, was diagnosed with dyslexia and ADHD, labeled "profoundly learning disabled," and thus landed in special education and a passenger on "short bus." As an adult, in an effort to make peace with his differences, he bought an old short bus and went on a journey around the country, interviewing people with differences - differences that made them social outcasts. In this book, he recounts his journey and profiles the people he met along the way.

I reviewed the book here, but there were so many passages in the book that really struck me, and I found myself highlighting and underlining and dog-earring pages so I could discuss them here. Here are a few:

There were faces of kids who were told every day that they needed to be normal, had to be normal, had to change themselves.

In this comment, the author is referring to a classroom full of kids in a special education class to whom he gave a presentation when he became a public speaker as an adult. I fear that this is basically the crux of what Finn will face over his entire life. That he is viewed as a set of problems and deficits that we should strive, strive, strive to remedy in order to make him as "normal" as possible. Whatever that is. Normal. Pffft.

People say to me all the time about Finn, "You can't even tell he has Downs. He must be very high-functioning," and "Thank goodness he's high-functioning!" I won't even speak to the part where physical appearance has nothing whatsoever to do with capabilities. But really - we have no freaking idea how "high-functioning" he is. And what does "high-functioning" mean, anyway? Doesn't it really, secretly, mean "as close to normal as possible?" Because that's what makes people feel just a little more comfortable with Finn and people like him. And what a kick in the face to individuals who are not "high-functioning." Are their lives of any less value?

The [“short”] bus emerged out of federal legislation, the Individuals with Disabilities Education Act (IDEA) of 1975, which mandated that children with disabilities be educated in a public school setting. It was a historic moment for my tribe, but there were problems. Schools were not required to fully integrate students with disabilities, and a segregated system of special education programs was created. Then along came segregated transportation: the short bus. Thrown together under the rubric of special education, these passengers included kids with physical disabilities, Down syndrome, learning disabilities, autism, as well as emotional problems. Special education and the short bus grouped together all these different students, expanding our culture’s definition of disabled. The short bus as a symbol of special education says as much (or more) about that culture – its values, beliefs, fears, aspirations, and injustices – as it ever did about people with disabilities.


My parents and I were told I was broken, and that my deficits should be diagnosed, treated, and cured. But the medical model gives the doctor all the power and dehumanizes the “patient.”

Although the author's "issues" were very different from Down syndrome, this still strikes a chord with me. I've always felt to some extent that professionals and lay-people alike have tried to measure Finn and quantify his value as a human being based on how well he can overcome his disability. And is it even really a disability? Down syndrome is a condition present in every cell of his body which manifests in a ways that make him different, and in ways that make him the same as "regular" folks. Why is that even considered a disability? I feel like ever since Finn was born and we were told that he has Down syndrome, we've been encouraged, pushed, expected, to help him, push him to be something that other people can feel okay about.

I realized what the short bus is all about: It serves a social function. Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are – not normal, not whole – a negation that calls into being its opposite: the normal. The normal looms over all of our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we . . . The short bus polices that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us.

Something to think about, huh?

Normalcy, though, is first and foremost an idea that arises from statistics. The normal, norm, or normalcy do not exist in the real world of people, despite the fact that we are told that we can modify our behavior and train our bodies and minds to reach it. We are told to chase it – in our culture, in our families, in our lives. But when we chase it – as I did – it disappears. Normalcy is like a horizon that keeps receding as you approach it.

I'm still trying to figure out what this so-called normal is. Wait. No, I'm actually not. Because I know that there is no such thing as normal. Take a good look at yourself. Are you normal? How, or how not? What about your parents? Your kids? We all have issues. We all have things about us that are troublesome, things that might make other people uncomfortable. We all have different talents and shortcomings, strengths and weaknesses. Why are we so conditioned as a society to accept nothing less than this mythical normal? Imagine a world in which everyone was the same. Imagine a world with only vanilla ice cream. No chocolate, no chocolate chip, no cookies 'n' cream, and certainly no Chunky Monkey or Brownie Batter. Really? Is that what we want?

A policy of emphasizing speech for these children is really a policy of forces assimilation of a unique minority group.

The author is remarking here on deaf and deaf-blind children who are pushed to undergo rigorous speech therapy in order to teach them how to speak, using their mouths and voices. And although Down syndrome is not the same as deaf or deaf-blind, the reference to "forced assimilation" jumped off the page at me. I think to a large degree, that's what my long-lived and ongoing struggle over therapy boils down to. What's it all about? Is it about helping Finn be the best he can be? Or is it about forcing him to assimilate, to be as much like a normal kid as possible - as high-functioning as possible?

So what did we learn from our short history of the feebleminded? If the social history of mental retardation is a story of shifting realities, one thing has not changed at all: Cognitive minorities are still one of the most socially and economically marginalized groups in the United States.

Uh huh.

[John Langdon] Down had great empathy for the individuals he studied and worked with. He described them in glowing terms as angels, perpetual children, and as almost impossibly kind. While this is better than most descriptions of people with disabilities, there was also a subtle form of dehumanization in this description of people with Down syndrome – it was as if they were in fact a different species.

Yes, and this seems to have endured very much so over the decades. It's something that I personally abhor - this notion that Finn is an extra-special gift, that he's an angel from God, that he was sent to us with some divine purpose or lessons to teach us, that we can always count on him to be happy and good-natured because he's got DOWN SYNDROME for god's sake. It's insulting. He's a person with likes and dislikes, opinions, and moods, just like everyone else. He's not otherwordly. He's got an extra chromosome, that's it. It's utterly scientific and physiological. Assuming he is one-dimensional takes away his humanity. Don't do that to him.

All of this leads to two important points. First, the struggles of individuals with Down syndrome don’t stem from their extra chromosome, but mainly from how they are treated. Don’t get me wrong, individuals with Down syndrome do face specific health challenges . . . . But, from what I have learned, their greater struggle is against discrimination.

The second point is that Down syndrome is far from an aberrant human experience. In fact, it is connected to all of us. At the moment of procreation, every one of us is birthed as a result of a game of genetic roulette. Spin, spin, spin your chromosomes and see what comes up. The genetic process is dependent upon variance and diversity of genetic combinations. One writer has estimated that there are some 65 trillion different genetic combinations. While this variance is a great strength, genetic roulette does create chromosomal abnormalities. Down syndrome is one of the most common “errors” to both occur and survive to term.

Just some of the author's interesting observations about Down syndrome after researching it and spending time on his travels with a young woman with Down syndrome.

This book obviously got me all fired up. It really touched some inner nerves for me, and it made me laugh and cry. It has taken up permanent residence on my bookshelf, along with Roadmap to Holland and Gifts, even though it's not a book specifically about Down syndrome. What I love about this book, though, is that it shows that Down syndrome certainly doesn't have a monopoly on marginalized groups of people.

Please read it. Read it if your family is affected by Down syndrome or any other aberration. Read it even if you're not personally affected by disability or difference - we all owe it to each other to try to understand what it means to be different.


Sharon said...

A great post Lisa. Really want to read that book now!

Mrs. Mother said...

I have to get this book. My husband was diagnosed with dyslexia as a child (and later as ADHD as an adult), and was labeled as emotionally disturbed. So far from the truth.

Our daughter was just diagnosed with ADHD, and she was just two points away from being diagnosed with a learning disability. I am almost positive she has one and will test her again at the end of the school year.

When my husband and I were discussing it the other night, he said that growing up, all he wanted was to be like everyone else, just to be normal. I told him I've realized there is no one set idea of normal. It's all about a person's perspective. Normal isn't a word the can be broadly defined.

And, I love him and my daughter both, just the way they are.

The Sanchez Family said...

Excellent post Lisa. I just want to let you know how much I appreciate your blogging, your posts, your information. You have always had such great insight and I will most definitely buy this book. I find myself all over the map with Joaquin and now Sofia on what I want for them vs my other kids and what is best for them. Thank you for reminding me that I want them just to achieve THEIR unique and fullest potential (whatever that potential may be) and not just conform to the "norms" of society. Thank you!

Anonymous said...

Katie, the girl in the book with DS, is the daughter of this blogger, Candee! She is a fabulous artist and person and has alot of strong ideas about inclusion. Her daughter Katie is in college now and living in her own apartment.
I always love to read your thoughts Lisa. I feel the same way in many ways but I don't think it is so black and white. Each of us has to, same as with all kids, discern what we value and what our dreams are for our kids... social comfort and acceptance, happiness, a niche, respect, belonging whatever... good grades, achievement- it is all from parents initially. I only have one child and she is an angel to me whether its because she has DS I can't say. All I know is that she has an extraordinary capacity to be loving and generous. It could be she would've been that way anyway? We are not the pushy services kind of family- I like her to be in an inclusive class because I think there is more to school than achievement for my daughter but I do want her to achieve as much as she is capable. That capacity is what many people see as "high functioning" I think. And they are all valuable people no matter what.
It is very difficult to navigate and balance all of these thoughts and feelings- they are the same and different- aren't we all?
I read the book awhile ago but thought it was very good and lots of ideas in it. Glad that you posted about it!

Keri said...

Great post Lisa! A couple of points really jumped out. First- school systems try to shove all kids with disabilities on the short bus. Prime example- me! I was struck by a car and missed 3 months of school in 10th grade. Reason the school system wanted me on the short bus? Because they didn't want to be responsible for my having to walk 0.5 miles to the regular bus stop. See, I was on anti-seizure medications and on crutches when I returned to school. So they wanted to put me on the short bus. I think my parents would have been fine with it if it had just been used for kids with disabilities like DS (hey, I have a cousin with DS so it isn't like I wasn't used to interacting with kids with DS). The problem was that in our school system, the short bus was also used for students incapable of behaving on the regular bus - and some of them were quite violent. I understand from a neighborhood mother that after an incident a few years ago, this practice stopped. Kids who get kicked off the bus for behavioral problems are not put on the short bus.

Second thing that jumped out at me was the quote "Schools were not required to fully integrate students with disabilities, and a segregated system of special education programs was created." My cousin with DS (and more particularly her parents) had to battle this almost her entire time in the school system. She was behind her age group by a few years, but quite capable of taking the normal courses with students younger than her. I'm not positive, but I think she met every "normal" state high school graduation requirement except some of the advanced math and science ones requiring advanced algebra and trig (I'm pretty sure she did basic algebra and geometry though because she used to tease me about my struggles in geometry). To get her into the mainstream high school crowd, however, required her parents to threaten the town with a court battle.

@ Mrs. Mother- From experience with my younger brother, if your daughter is bright, the schools do NOT want to provide her with services (why intelligence isn't expected in people with learning disabilities is something that drive me bonkers!). You'll probably have to do what my parents did with my younger brother - take her to an independent neurologist and have her tested. Good luck Mrs. Mother and shoot me an email if you need encouragement (my husband is ADHD and dyslexic and is completing his PhD!).

Keri said...

Mrs. Mother-

Wow does your comment sound familiar. Same thing happened with my younger brother. My parents took him to an independent neurologist and had him tested for learning disabilities and low and behold- he was 2 pts OVER the threshold (unlike 3 pts under by the school's evaluation) for services. This may be worth looking into (I've heard that requirements vary from state to state). Best of luck to you and your daughter!

B. McKenzie said...

great post..will buy this book. thanks for sharing.

Mer said...

Thanks for the recommendation - I'm going to be sure to read it!

TUC said...

I hate the term high-functioning... Can you imagine the reaction you would get if you said to a friend with a typical child, "wow she seems high-functioning". Yeah, whatever.

I've been hearing a bit about this book... I guess I better put it on my list.

Anonymous said...

Thanks for the recommendation Lisa,,definitely going to pick this book up

Monica said...

Great post and snippets of the book. You make me want to read it. Road Map to Holland and Gifts are also permanently on my "must read" list for all moms who have a child with Ds.

Terri said...

I also really love this book, it will keep you from settling--which is unsettling, but healthy.

Deborah whose daughter Ashley is also profiled in this book, is also a blogger. Find her here:

Another book I recommend is Disability is Natural by Kathie Snow.