Kathleen Says: Cerebral Palsy Awareness Month Interview #1

1,264 words

10 minute read

As a part of Cerebral Palsy Awareness Month, I interviewed some friends with CP.  (My own interview will be posted at the end of the month.)  I wanted to get our impressions on some aspects of having a disability, but I also wanted to include general questions, to normalize those of us with CP.  I think it's important to realize our perspectives about things may be similar, but we are also our own unique people.  

First up, my friend, Kathleen:

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What is the most important thing you have learned about yourself?

The most important thing I have learned about myself is that I am who I am today in spite of AND because of my disability. There were times in my life when it seemed like it would be easier if I wasn’t disabled, especially when I was struggling with the brutal environment that is junior high. I still have moments when it feels like being non-disabled would be so much easier. But then I think of all the people and experiences that have come into my life through my disability and I realize that I owe so much of my identity to them. My disability is not all of me, but it is part of me—a part that I value and celebrate. Learning to accept my disability as part of my identity in a peaceful and prideful way has helped me immensely. So has learning that being proud does not mean that I have to be smiley all the time about every aspect of CP. All of us need a day to whine about our spasms now and again.

What is your favorite thing about the month of March?

Feeling like spring is coming!

What is your favorite thing about yourself relating to your disability?

I like the perspective it gives me. Because of my disability, I learn from such a diverse group of people. It makes me think about life in a way I probably wouldn’t otherwise and allows me to have a broader view about what makes a valuable life. It makes me so sad to think of all the people I most likely wouldn’t know if not for my disability. I met some of my closest friends in physical therapy!

How do you deal with people's invasive questions, comments, or stares?

It very much depends on the context and how the person asks. Most of the time, I don’t mind answering questions if the person asks nicely and seems genuinely interested in learning. I’d also rather them get an answer from me than to make an assumption, go to “a specialist” that too often speaks for us, go on a crummy Google search. But I’m definitely not obligated to answer a question or educate at all times. I don’t exist to be a teaching tool and sometimes, I take a day “off” from educating if I’d rather just buy my groceries without dealing with random lady from the neighborhood’s questions. There are definitely times and places that are more appropriate than others… and certain questions that only belong in a certain setting. For example, I might be willing to answer a certain question in a formal educational setting (like a disability education panel) that I wouldn’t be willing to answer in the middle of the local movie theater.

It also makes a difference to me if it’s an adult or child. I feel more inclined to answer children because they are often genuinely curious and still learning. I still expect them to ask politely though and not to feel entitled to an answer if I’m not in the mood.

If someone dares to say, “What’s wrong with you?” I will say, “What do you mean by that?” and roll away.

What is your favorite song?

It’s so hard to pick just one song. I don’t think I can! But I most love songs that connect me to a happy memory. Some of my favorite artists include Taylor Swift, Five for Fighting, Kelly Clarkson, The Beatles, and James Taylor—a healthy mix of old and new!

What is one thing you want people to realize once they meet you?

I hate it when people say that “they don’t see my wheelchair” because it implies that seeing my wheelchair invalidates my personhood or something. Please see me AND my wheelchair—my chair is a part of my life and it doesn’t need to be erased to make my humanity visible.

Do you have a role model or a favorite celebrity in the disability community?  If so, who are they, and share a little about them.

This is tough because there are so many great ones. I think I have to go with the late Harriet McBryde Johnson, a disabled lawyer and author. Her work and ideas have very much shaped the way I view disability. Her books Too Late to Die Young and Accidents of Nature helped me articulate why many stereotypical narratives of disability make me uncomfortable—most specifically, the stereotype that we’re all hung up on “curing” our disabilities.

Have you ever watched TV, movies or a music video and thought, "That person's just like me!”  What was the show/movie/video?  Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?

Sadly, there are not many media sources that portray disability in a very empowering way. But I’m a big fan of Zach Anner, a comedian with cerebral palsy who makes videos and had his own series about travel on the Oprah Network. It’s awesome to see a disabled person in the media talking about disability and other topics in a humorous, engaging way. I love his “Work Out Wednesday” videos in which he jokes about his lack of athleticism… especially the one about crawling on the treadmill.

What is your favorite piece of adaptive equipment and why is it your favorite?  (Wheelchair, walker, crutches, etc.)  (Can be yours or someone else's.)

My wheelchair. It has given me so much freedom to go places and do things without worrying about falling. It also allows me to save energy for other things… energy that would all be spent standing (on a walker) without it. My wheelchair has literally been with me everywhere through so many important moments… graduations, birthdays, good times, and bad times. I almost feel like it’s a friend rather than just an object. I love decorating it with buttons and trinkets that show my personality.

What is your favorite scent?

It’s tough to pick just one. I love the smell just before it rains… even though for me it’s a warning to get my power chair inside!

On a more sentimental note, I love the smell of the cologne my late grandfather wore. It connects me to so many memories and to his love for me. There are still traces of the smell in my grandparents’ house, and I always hope that my clothes will pick it up. I miss him and the scent helps me to feel that he is close by.

***

{Image is: Kathleen smiling in glasses
and a maroon dress.  Photo credit:
Kathleen Downes}

Kathleen Downes is a 23-year-old woman with Cerebral Palsy and a graduate of the University of Illinois at Urbana-Champaign, where she studied community health and disability studies. She hopes to pursue further education in social work. In her free time, she enjoys reading, writing, and participating in disability activism. She lives in New York with her family and her elaborately decorated power wheelchair. You can find more of her work at The Squeaky Wheelchair

Book Review: Say What You Will by Cammie McGovern: Chapters 8 & 9

361 words

3 minute read

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ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 8:

Amy gives Matthew a poem for Christmas and he doesn't understand it.  To clarify, Amy tells him the poem is symbolic.  She says, "I'm poor in many ways, except monetarily."

Really?  I feel like (again) this is the author's lack of insight coming through.  Not to mention it makes Amy entirely inconsistent: at twelve, she says she's lucky, and at seventeen she insinuates that her CP makes her "poor?"  (I also wonder if this new revelation is the result of Matthew pointing out Amy's never had true friends, and her "wake up call" regarding that?)

ABLEISM:

Chapter 8:

Matthew doesn't know what Amy's plans are after high school, but he assumes she will be taking correspondence courses online.  He has not even thought to ask her, though I feel like he would ask a typical peer, or at least, assume they would go to college, if their parents were as well off as Amy's.

SEXUALITY:

Chapter 8:

Amy starts developing feelings for Matthew.  It's all very unfamiliar to her, which makes sense, given that this might be her first crush.  But then she thinks, "kissing was probably too much, of course."

I just can't understand that a book like this would encourage this kind of ableist nonsense.  Kissing a boy as a disabled girl, or being kissed by a boy as a disabled girl, is in no way "too much" to ask.  And by framing it that way and making Amy the one to think such things, just creates a deeper divide between her and typical peers.

Amy shares that one of her occupational therapists has talked to her about sex and Matthew is terribly uncomfortable.  He says for her to stop saying the word "sex" and she apologizes.

Chapter 9:

On New Year's Eve, Matthew texts Amy that if he was there he would "kiss the back of your hand and thank you for being my friend this year."

My gut says that had Amy been able bodied he wouldn't be texting her about kissing the back of her hand and being "friends."

***

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Book Review: Say What You Will by Cammie McGovern: Chapters 6 and 7

387 words

3 minute read

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ABLEISM:

Chapter 6:

Nicole says Amy's peer helpers are "fired if they put any make up on you."  There is never a conversation about whether or not Amy would actually want to wear make up, or an assumption that Amy was perfectly capable of consenting to make up or not herself.

Sanjay, one of Amy's peer helpers, tells the cheerleaders that he is "kind of like a babysitter for Amy."  How totally embarrassing.

We also learn, courtesy of Matthew, that in the training sessions, Nicole has passed out a list of Amy's interests that is six years out of date, so that her peer helpers will have something to discuss with her.  Amy has no idea her mother passed out such a list and has no idea what was on it.

Matthew still can't tell whether Amy is upset or joking.  I feel like, even with half her face affected by CP, emotions would be fairly easy to read (assuming Matthew doesn't have other disabilities that make reading emotions difficult.)  I'm fairly sure though, that it is just Amy's emotions he can't read.

Chapter 7:

Here, we have Amy's mom telling all the peer helpers in training about how Amy was "supposed to be a vegetable" but proved all the doctors wrong.

I wonder if I am the only one who finds the fact that her mom is sharing Amy's medical history with her peers as wrong.  Not to mention, I don't think it would do much to break down barriers if the other kids constantly hear what low expectations there were for Amy when she was a preemie.  Twice now, Amy's medical history has been shared without her knowledge or consent.

Mathew says he looked up Cerebral Palsy and read about it.  He says he has also rented My Left Foot and watched it twice for insight on CP.

To me, this is like people watching Rain Man for information about what it is like to be autistic.  You are seeing one very particular presentation of CP, one man's experience, portrayed by an able bodied actor (so that it feels, in essence, like a mockery.)  Matthew recommends that Amy watch My Left Foot, because he does not like her recommending books to him on OCD.

***

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Book Review: Say What You Will by Cammie McGovern: Chapters 4 and 5

745 words

6 minute read

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Today, I'm sharing two chapters worth of my review on Cammie McGovern's Say What You Will.  Unfortunately this means look in depth at two chapters worth of ableism.  For anyone who missed the past chapters, you can find them by clicking the Cerebral Palsy tag.

ABLEISM:

Chapter 4:

One of the most offensive things in this book, to me, is that the author uses Matthew's OCD in which to couch terrible levels of ableism.  Matthew narrates that he is "afraid of everything about Amy, especially her body, which had the terrible problem of being crippled and attractive."

Perhaps no one has told young Matthew that for an able bodied person to use the C word about a disabled person is a huge no-no.  He goes on to say that Amy is "pretty now, in a bent, crooked sort of way."  The overarching message that comes through via these excerpts is that it is impossible to be both disabled and attractive.  For anyone reading this, who may not be aware: that is a myth.  Disabled and ugly are not synonymous.  But young people reading this book for the first time would not know it, given the difficult time Matthew has holding this reality in his head.

We also have the reference to Amy's mom insisting that all the peer helpers introduce Amy to a certain number of friends each day and keeping track of the data on a spread sheet.  Amy is seventeen.  She doesn't need Mommy arranging play dates for her, my goodness.

Mom also says, they want to convey a message to all those peers who may have been hesitant to interrupt Amy, as walking is difficult for her.  She wants them to "go ahead! Interrupt her!"  Or, Amy's mom, these kids could hold their horses until Amy is seated somewhere to talk to her.  I'm bothered that Mom's priority seems to be easing the other kids' discomfort and not making sure her daughter is not totally exhausted from multitasking all day.

To finish, Nicole says she wants Amy to have friends she shares common interests with and she also "wants Amy to get a little practice deciding for herself who the jerks are."  You know what could have helped that problem?  Amy being taught how to relate to her peers when all the other toddlers were learning to share and make friends, too!

Chapter 5:  

Amy talks about her AAC device and how her newest has an "honest-to-God human-sounding voice."  Now, maybe I'm nit-picking here, but comments like these only widen the gap between physically disabled nonverbal people and everyone else.  Maybe it's because I've been around AAC devices all my life that this comment gets under my skin.  I'm a big fan of showing off new adaptive technology, don't get me wrong.  Maybe it's knowing that Matthew has already pointed out that he is freaked out by "her computer" talking to him.

Matthew remembers later in the chapter, that back in second grade, Amy ate cupcakes "like a baby."

A fair assumption for a seven year old to make, but even so, the more that class of kids was around Amy while she ate, the more normal it would become for all of them.  As it stands, Amy's character has been holed up in that resource room eating lunch for who knows how long.  Maybe if she hadn't been hidden away, she wouldn't be in the position now where she feels like a single can of Boost is all she can consume in front of her peers.  Even in this, Matthew seems relieved.

He also mentions that her hand had "freakish control over her talking board."  Matthew, it's not freakish if you consider the way CP actually affects Amy's body.  (And you can't tell me they didn't at least touch on that at the presentation about Amy to all the second graders...)

Matthew also has a mom who understands his OCD and gets that it is something beyond his control.  This, in my opinion, makes OCD "okay" for the readers.  I found myself resenting that a bit, especially given what a complete opposite Nicole is, as Amy's mother.  She cannot accept Amy's CP, which we'll see explored later, but to me, as someone with CP, it made it seem like having it was "not okay."  Matthew's OCD was normalized in the text.  Amy's CP never is.

Chapter 6 is coming tomorrow.

***

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Book Review: Say What You Will by Cammie McGovern: Chapter 3

1,524 words

12 minute read

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It's time for chapter 3 of the Say What You Will review.  If you missed chapter 1 or chapter 2, feel free to catch up before checking out the issues in this chapter.  Get ready, because there are a lot:

SEXUALITY:

Chapter 3:

Amy says she watches people, including boys she "might have had a crush on in a different life."  Why does Amy's disability preclude her from having a crush on a certain kind of boy?  It sounds like the author has totally bought into the nonsense that disabled people can and/or should only have eyes for other disabled people.

ABLEISM:

Chapter 3:  

Amy states that "for most of her life, she felt like Rapunzel.  Trapped in the tower her walker created."  Apparently, in eleven years, no one had ever "tried to be her friend."  While entirely possible that she would feel walled off from her peers due to adaptive equipment, I think it's really damaging to promote this way of thinking especially among young readers who may also have CP.  We see she's excluded from class projects even when she is part of the group, not allowed to even touch them.  I also think it's highly unlikely (and unnecessary) to say that no one in eleven years ever tried to be Amy's friend.

She also states that she watches her peers a lot.  She lists off several types that she watches, ending with "a shy girl like herself (or the person she would have been if she could walk and talk.)"  Why is the part in parenthesis necessary?  Amy can walk and talk.  Just because she does both with the aid of adaptive equipment does not negate their validity.  Not to mention the fact that without her disability, Amy would be an entirely different person than she is now.

Matthew critiques Amy's lack of social awareness, and says "you never answer questions."  This leaped out at me because of Matthew's pure presumptuousness.  Being asked questions when you are disabled is different than being asked questions if you are not.  Nondisabled people feel entitled to information about your diagnosis (your medical history) all the time.  Chances are, people are not coming up to Amy to discuss the weather, and it is entirely within her right to refuse to answer questions like these.  But instead, Matthew points the finger at Amy, making her seem in the wrong for not making conversation.  Not to mention the fact that Matthew himself has previously observed that Amy is unable to walk and talk simultaneously, which would make much of school conversation difficult.

Amy states that for years she has eaten lunch in the special-ed teacher's resource room and that it was "fine" because she was messy.  I can't think of a single reason why a situation like this would come to pass.  All students eat in the cafeteria.  Since when do we segregate one to eat in a resource room?  She has an aide, for goodness sake.  That person could totally help her wipe up, if needed.  Amy's thrilled that she can eat in the cafeteria because "all she has to do is pay students to sit with her."  Both of these things sound so degrading to me, but the way they're written is as if Amy should be and is totally okay with being segregated from her peers and then paying them to sit with her in the cafeteria.  Her mother doesn't like what it suggests - that they might pay students to be her friends - but ultimately does nothing to put a stop to it.

And just to end the chapter in a totally maddening way, Amy writes to Matthew that "he's the only person who has ever told her the truth," leaving no room for doubt:  Matthew is this book's able bodied savior.  Matthew told her something based on zero facts that he gleaned by only peripherally existing around Amy, and instead of telling him to go away, she thinks he's amazing.

ACCURACY AND PORTRAYAL ISSUES:

Chapter 3:

Amy is floored that she has "never seen [her lack of peer relationships] as a problem" and all of a sudden considers genuine connections she has made with adults to be invalid, because Matthew "pointed out the holes in her thinking."

I understand that adults and children cannot be friends in the traditional sense, but it doesn't mean they have any less respect for Amy now that she has had her revelation.  Some of us with CP do connect more easily to adults than to peers.  In that case, we are encouraged from young ages to socialize with other children.  It's not left as a nonissue until we are almost out of high school.  She has "never considered" that being around an adult all the time might dissuade peers from coming up and conversing with her.

Again, why does the author persist in portraying Amy as so oblivious?  She is ridiculously intelligent, and even if she did have trouble forming friendships, I'm sure the fact that she was walking around with an aide and it kept other kids at a distance was not lost on her.  I had one in sixth grade and they really do alienate any potential peer relationships.  For Amy to remain oblivious to this is just part of what makes her seem like a caricature instead of a character.

While discussing all the ways an aide assists Amy throughout the day, she inexplicably segues from that they "bubbled the answers on her Scantron tests," to "changed her sanitary napkins."

Not only is this an unnecessary and abrupt jump from educational to highly personal needs, it illustrates another issue I don't imagine the author meant to point out:  by solely using peer helpers, trained by her mother, instead of professional adults, trained in such personal matters, Amy is now subject to having her own female peers assist her with this very personal need.  Again, I would imagine, it is already at least slightly embarrassing to need help in such a personal area by someone who is not, say, your mother.  An adult aide would have some training and would be able to assist Amy in a professional manner, at least.  But needing to rely on peer helpers for this sounds beyond humiliating.  (I could not even deal with it when my fourth grade classrooms followed me into the bathroom and stood by the wall listening to me use the restroom, at our teacher's insistence.)  The fact that this is glossed over like it isn't something that would be totally humiliating is, at the least, troubling to me.  Difficult to make a friend with the same person who helps you change your pad, and isn't the whole point of this so that Amy can make friends?  (Plus, given the mix of girls and boys, Amy would only have assistance for this three-fifths of the time!)

Amy speaks to this soon after saying that "boys couldn't" help her in the bathroom but that she would "drink less on those days and improvise more."  Can we talk about how dangerous this is?  I admit that in middle school, I often drank less so I didn't waste nonexistent passing time going to the restroom, but it's not something I would recommend whatsoever.  I would have definitely preferred a situation where I could have been free to drink my milk at lunch and have time to use the restroom like everyone else did.  Hydration is a necessity.  And the fact is, circumstances that call for Amy to sacrifice her own health are not safe ones.  She could have major health issues from not drinking enough, but that is never even alluded to in the text.  Just, "she'll improvise."  She shouldn't have to improvise.

In this chapter, Amy's mom finally wonders if they didn't prioritize socialization enough.  Might have been a good question to ask when your kid was just starting school.  Amy affirms they didn't prioritize it at all.  To top it all off, her mom regularly tells her that she's not like other children and doesn't need to act like them.  Wow.  I can't say enough how the whole premise of this book and the portrayal of Amy's character as a totally unaware, naive child is baseless.

To finish, Amy writes to Matthew that "when you're disabled almost no one tells you the truth."  Does she mean aside from her unflinching scientist mother?  The therapists and aides she has been surrounded by all of her life?  I can buy that maybe Amy has never experienced a peer telling her the truth (if only because it seems that her peers have yet to tell Amy much of anything.)  But as a disabled person, I can say, we are well-versed in reality and in the truth.  The fact that Amy is portrayed the opposite seems to go against a lot of what it means to be disabled, and is instead, based on the perception of what it must mean to be disabled.

If you are interested in what chapter 4 of this review has in store, tune in tomorrow!

***

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Book Review: Say What You Will by Cammie McGovern: Chapter 2

955 words

7 minute read

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In case you missed the review of chapter 1, feel free to check it out before reading my thoughts on chapter 2.  This chapter has its share of ableism and portrayal issues, which I'll share about in the following paragraphs.

ABLEISM:

Chapter 2:

Matthew remembers his first impression of second-grade Amy, who "wasn't a true freak, like he'd hoped."  I get that he is a child at this point, but why include something like that in the text of a book like this?  Who does it help?

Also here, we meet Amy's teachers who are hopelessly ableist and ask if Amy is all right, when she tries to contribute to conversation, and also shares with the third grade class out of Amy's presence that "the doctors predicted Amy would be a vegetable for the rest of her life and look how far she's come." The teacher tells them she has a high IQ and Matthew "waits for her to do or say something extremely smart" and concludes that "no one understands anything she says."

I was shocked to read that Amy's classroom teacher would share such deeply personal information about Amy outside her presence.  Especially to a classroom full of seven year olds.  What exactly did the teacher hope to accomplish by outing Amy's medical history in this way?  Honestly, and I hate to even say this, but this part gives me pause about my own classroom teachers.  Did they talk about me behind my back to the class?  What did they share about me that I never knew about?

When girls make fun of Amy at recess two aides talk about it together, but neither one asks Amy if she's getting her feelings hurt.  Matthew supposes this "makes sense" because no one would understand her long, complicated answers anyway.  Later, Matthew decides Amy "isn't really a kid."

What I am wondering is why a part like this wouldn't be told explicitly from Amy's perspective, so we could see if her feelings were being hurt or not - not just other people's opinions about whether she is being hurt.  I wish we had heard from Amy, looking back at her own childhood and what her thoughts were being teased by other children and not having a way to express herself until she's nine years old.  Instead, the whole chapter is from Matthew's point of view.

Later, having been asked by Amy in seventh grade to help her print an essay, Matthew secretly prints two copies and keeps one.  Why exactly?  Did you get permission from her to keep her property, Matthew?  Somehow, I doubt it.  There is no explanation and there is no sense of remorse on his part for stealing something belonging to her.

In eleventh grade, Matthew's English teacher asks what the class thinks of Amy's essay (because Amy is not in that class.)  One student said if she were like Amy she would kill herself.  Matthew speaks up and says he has "known" Amy a long time, and doesn't believe her optimistic essay is true."  The English teacher points out that they don't hear the message by disabled people that our lives aren't tragedies often enough.  But her comment is immediately drowned out by a student who insists Amy's life is tragic and then by Matthew who insists to Amy herself that her whole essay is false and Amy takes him at his word.

I really resent that people continue to talk about Amy behind her back, and that no one seems able to give Amy honest feedback to her face, the way they would with another student.  It really does Amy's character no favors to have her entire essence dismantled because Matthew believes it's not honest, and Amy quickly agrees he is right.  So the message here is that the person with CP doesn't actually know themselves as well as a random able bodied student who read one essay one time knows her.

Matthew also refers to Amy speaking to him as "her computer" and it's pointed out more than once by him that her facial expressions are impossible to read.  This makes Amy seem simultaneously unreliable regarding her own understanding of her circumstances but also less than human.

ACCURACY AND/OR PORTRAYAL ISSUES:

Chapter 2:

We find out that Amy only gets her first AAC device in fourth grade.  Most children with their speech impacted will start learning to use one in therapy as soon as they are able.  Certainly by four or five years of age.  There is no reason I can think of that Amy would not be able to use even a rental in school.  With Amy's parents so well-off, I can't imagine insurance or out of pocket cost would be an issue.

Amy's also pointed out as being one of the top three math students in class.  While not unheard of, CP often affects someone's ability to excel in math, especially subjects that involve graphing or spatial concepts.

But the biggest issue I find in this chapter is the content of Amy's essays.  Her voice, in these, does not read as authentic to me at all.  What it sounds like is an able bodied adult writing their own insights after being around a disabled seventh grader, or eleventh grader, not something an actual twelve to sixteen year old with CP would say.  Amy's comments about beauty and fashion are particularly troubling because it's a mix of inspiration objectification, internalized ableism, and unrealistic reactions to not seeing herself represented anywhere.  Not seeing yourself represented in media as a teen with CP is not freeing.  It makes you feel outcasted.

Tune in tomorrow for more thoughts on chapter 3.

***

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Book Review: Say What You Will by Cammie McGovern: Chapter 1

1,117 words

9 minute read

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I was recently asked if I had ever read Say What You Will by Cammie McGovern, and what my thoughts were on it.  As I have never read a book with a main character who has CP, I thought I should at least give this book a cursory read through, especially as March is Cerebral Palsy Awareness Month.  What better time to talk about a book that features a character with CP?

I found the story had several glaring issues, but for the purposes of this review, I will stick with, what I believe, are the three biggest:  accuracy and portrayal issues, ableism and sexuality.  I realized soon after beginning this review that it was going to be entirely too long to post all at once, so instead, I'm going to do it a chapter (or two) at a time.

SEXUALITY:

Pre Chapter 1:

Amy (who has CP) says in her first note: people would think "sex was impossible but love was not" but that she has found "both were possible and impossible."

This creates a dangerous premise to base a book in which the author claims she breaks harmful stereotypes.  By insinuating that neither sex nor love is possible for a girl with CP, it sets an expectation in all those who read this book.  For those with CP (myself included) it gives the message that we are not lovable and no one can have sex with us.  It gives the same erroneous impression to people whose exposure around people with CP is limited.

ABLEISM:

Chapter 1:

The first words in the book are by Amy.  This gave me the impression that she was the main character.  However, even in the first unsent email we read by her, Amy says the story is "about you.  Mostly you."  You, in this case, is Matthew, her able-bodied peer helper, and eventual love interest who has OCD.

After receiving his first email from Amy, Matthew says, he is fine with being on the list of potential paid volunteers and that Amy's mother has said they "might get community service credit," for it, as well as getting paid.  Amy does point out the grossness of this thinking, but Matthew retorts that her mother shouldn't have said it in the first place.  Also true.  Why is a statement like that even included?

We learn that Amy won't be present at the training sessions for her peer helpers.  Why not?  We have no idea.  That is literally all Amy says on the matter before changing the subject and it never comes up again.  Why wouldn't she be present at training sessions that directly concern her?  If it's a matter of Amy herself not being comfortable attending, that's one thing, but if she was intentionally excluded, as if it's nothing she needs to actually concern herself with,  that is an issue.  And it's troubling to me that the person at the center of such important training wouldn't be there for any of it.  How will her peer volunteers really know how to help her best?  This is another oversight that, in my opinion, comes from having zero disabled input in the writing of this book.  It makes sense as an able bodied person to tell the fellow able bodied people how to help the disabled person without actually consulting the disabled person or asking for their input.

Amy assumes everyone else has taken on the role of peer helper so it will look good on their college applications.  With Matthew, she is sure "it's different."  How is it different?  What does she know about him (other than that he's able bodied) that leads her to the conclusion that he has intentions that are anymore honorable than anyone else's?

Chapter 1:

ACCURACY AND/OR PORTRAYAL ISSUES:

Amy is emailing Matthew and telling him how excited she is that he is on her list of peer helpers.  We learn that instead of getting an aide through school, Amy's mother is paying her peers to fill this role.  Amy knows her parents are essentially "paying people to pretend to be her friend" and then says, "I have no problem with this."  Aides are part of legal accommodations students with disabilities are entitled to and that those are usually squared away at IEP meetings.  Paying peers to do the same job seems illegal.  And Amy has no problem with this?  I don't know of a single teenage girl, especially one who had CP, who would be okay with her parents paying peers to pretend to be her friends.  This statement makes Amy unrelatable from the start, because she is untouched by the "unsettling" and "prideless" thing her parents are doing on her behalf.

Also in their first round of emails exchanged, Amy questions why Matthew does not have many friends.  "You seem pretty normal, right?"  Here's the thing that gets lost in translation when a character with CP (or any disability) is written by an able bodied writer (and not at least proof-read by someone disabled) having CP is normal for us.  It's not normal for someone who doesn't have it, so, to that author, it would make sense to use the word "normal" in reference to an able bodied classmate, but for us who actually have CP?  Maybe not our first thought.

Amy's mom, Nicole, says that they are replacing adult aides with peer helpers because Amy "wants to learn about making friends before she goes off to college."  Um.  What?  I speak from experience when I say socialization goals were on my IEP from the time I started school at 2 years old.  It's just plain negligent to ignore your child's socialization until her senior year of high school!  (Also, another area where the author's lack of insight shows.)

Amy's level of social awkwardness is a huge thing for me in this book.  I understand what the author was trying to convey, but honestly, it would have been more effective if the main characters had been starting middle school with the kinds of behaviors she exhibits.  Matthew's mom remembers that Amy was the child at the sixth grade chorus concert that "sat in a chair up front and sang louder than everyone else" and also "waved her arms like she was conducting the audience."  Amy wants Matthew to "tell her when she's doing stuff wrong," which instantly paints Amy as not only physically needing help but also painfully socially oblivious.

Tune in tomorrow for more thoughts on Say What You Will, and let me know your thoughts.  Have you started reading this book?  Do you have CP?  What are your thoughts on the first chapter?

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