Emma Crees is 32 and lives in Oxfordshire, UK. A life long wheelchair user she’s passionate about all things disability and can often be found online ranting about this. If she’s not ranting about disability she’s probably talking about books or writing. All of this and more is on her blog, A Writer In A Wheelchair, or on her twitter account @FunkyFairy22. When Emma isn’t online she can often be found knitting, sailing or volunteering.

Courtney Gilfillian lives, writes, and works in New York City. She is constantly on the hunt for a good cocktail, the best pancakes in the city, and most of all a good book. Find her on Twitter at @whitegirlbkcvrs and at her blog about diversity in YA lit.

s.e. smith is a writer, agitator, and commentator based in Northern California, with a journalistic focus on social issues, particularly gender, prison reform, disability rights, environmental justice, queerness, class, and the intersections thereof, with a special interest in rural subjects. International publication credits include work for the Sydney Morning Herald, The Guardian, and AlterNet, among many other news outlets and magazines. smith’s writing on representations of disability in science fiction and fantasy was recently featured in The WisCon Chronicles, Volume 7. Assisted by cats Loki and Leila, smith lives in Fort Bragg, California. You can follow s.e. on Twitter, ou personal site, Goodreads, and lots of other exciting places online.

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Today, we’re hosting a discussion of Say What You Will by Cammie McGovern (titled Amy and Matthew in the UK). Our participants were Emma Crees, Courtney Gilfillian, and s.e. smith, who discussed the portrayal of both main characters’ disabilities–cerebral palsy and OCD–as well as several other disability-related issues that came up in the book.

Please note–this discussion contains spoilers.

John Green’s The Fault in Our Stars meets Rainbow Rowell’s Eleanor & Park in this beautifully written, incredibly honest, and emotionally poignant novel. Cammie McGovern’s insightful young adult debut is a heartfelt and heartbreaking story about how we can all feel lost until we find someone who loves us because of our faults, not in spite of them.

Born with cerebral palsy, Amy can’t walk without a walker, talk without a voice box, or even fully control her facial expressions. Plagued by obsessive-compulsive disorder, Matthew is consumed with repeated thoughts, neurotic rituals, and crippling fear. Both in desperate need of someone to help them reach out to the world, Amy and Matthew are more alike than either ever realized.

When Amy decides to hire student aides to help her in her senior year at Coral Hills High School, these two teens are thrust into each other’s lives. As they begin to spend time with each other, what started as a blossoming friendship eventually grows into something neither expected.

AMY

s.e. smith: Amy used a walker and switched to a scooter at university. Her mother really pushed her to use a walker when she wanted to use a chair because walking was painful and uncomfortable. But her mom was hell-bent on making her walk. Which is definitely true of parents of disabled children who think not being able to walk is The Worst, but the author just glossed over how problematic this is.

Emma Crees: I can walk but don’t really walk much—maybe a few times a month. My parents pushed me to walk as a child and that was OK then, but I always had a chair and switched between the two.  I think they’d like me to walk more now but it’s not a big deal.  Amy’s mom is the like the extreme opposite of my parents whilst still being encouraging.

s.e.: I can understand encouraging people to retain mobility and prevent atrophy, but that’s an individual choice every disabled person needs to make.

Emma: I use a stander for that reason.  Amy could and should have been mobile but also in a chair, which would have given her so many more opportunities at school.

Amy’s eating pattern was a big unrealistic thing for me. Some people with CP have real trouble gaining weight or keeping weight on them because of extra energy needed to mobilise or do things or due to constant involuntary movement (if that’s the type of CP they have).  The never said what type Amy has – they just at some point said Hemiplegia but that describes the parts of her body it affects.  But I suspect she’d have that problem with her weight as she uses a walker all the time.

Yet, her lunch at school was often just a milkshake. The reason given is that it was difficult/time-consuming for her to eat and the aides wouldn’t have to help her, but no way would a milkshake be sufficient.

s.e.: I’m surprised they didn’t just give her a jar of baby food and have at it.

Emma: Also, if I’d been living/treated like Amy was with the food thing and especially the “not drinking as much so boys don’t need to help her to the bathroom” thing, I’d have ended up ill with a bladder infection.

s.e.: I know people calculate fluid/food intake on the basis of horrid external factors, but the way it was presented was just…gross. It very much exoticized her and didn’t explore why she was forced to make awful decisions like that. And if she wasn’t comfortable using the loo on her own and needed assistance, why did she have male aides like Matthew and Sanjay if she didn’t want to work with them?

Emma: Because she wanted Matthew. The whole plot for the book revolves around the fact that she met Matthew the year before, was intrigued by him, and he pointed out she didn’t have any friends. She hadn’t realised that and thinks not having adults with her at all times will help her make friends. And she developed a crush on Matthew so she was determined he had to be her aide.

s.e.: Which, speaking of plot holes, was beyond ridiculous.

Emma: Surely the school would have had some input into who were chosen as “peer supporters”, and a lot of the issues (and thus plot) would have been avoided by that.

s.e.: Yes, definitely. Not opposed to the idea of peer supporters, but the execution was terrible.

MATTHEW

s.e.: Matthew’s depiction is also kind of good-bad. There are parts of it that feel authentic to me, but it’s presented in this kind of gawking, look at the freak way. The author gets some things, like symptoms, down pretty well, but some of them are very much pop culture OCD and the presumption of what OCD means instead of actual OCD. It’s not necessarily tapping things and counting. It can be really ritualistic, like, “I have to check my door three times before I can leave to make sure it’s locked.”

I really disliked Amy’s unsent really cruel letter to Matthew about how he hides behind his illness. I get that it was supposed to be cruel and out of line, but it reinforced so many stereotypes about mental illness and OCD. As though we’re making it all up for attention or using it as a shield for avoiding things.

Also, their whole relationship at the end of the book just didn’t quite gel for me. He’s mad at her for having sex with someone else (understandably–not that he has control over her body but he’s upset because he loves her and he feels betrayed) and then they don’t talk and then she comes back pregnant and then everything is cool? And they’re acting like parents of a baby they know they aren’t keeping and isn’t life just grand? It’s just very odd.

Courtney Gilfillian: What did you think of “the voice” that Matt heard?

s.e.: People definitely have intrusive thoughts (which is kind of how I read the voice?). It varies from person to person, but it’s usually less verbal than it is visual–like a graphic image of violence, or a very vivid imagining of your stove catching fire or something.

Courtney: But is it like another person?

s.e.: Not in my experience–I would associate that more with psychosis. I mean, maybe other people with OCD have different relationships with it? For me, it’s very much like, this is a thought from the outside, and it is harmful, but it’s still compelling me. And denial/refusal to go to therapy are also really common, but I hated the way the book made Matthew’s decision not to go into an after school special.

And ARGH my frustration with the author choosing hand-washing as one of his compulsions, because, you know, STEREOTYPES MUCH?

Courtney: I actually did know a kid who had hand-washing as a compulsion. I thought his was the desk tapping?

s.e.: Yeah, and the hand-washing totally happens! But it’s not the only compulsion people with OCD have, it’s just the most popularized one. And the fact that the manager at the movie theatre had the same compulsion was annoying. It could have been this great chance for Matthew to interact with someone who also has OCD, and for him to see what his life is like. But instead it was just…

Emma: It could have been a disability acceptance, pride thing perhaps.

Courtney: It was slid in there as an afterthought. Also, we don’t really see his therapy sessions until the end.

s.e.: Yes, and we barely see them. Here’s a huge part of how he’s turning his life around and it’s just in the background. The book clearly centers on Amy, but Matthew is very much a major character and it’s weird that his illness is just kind of shunted to the side. And I doubt that Matthew would stop with rituals like knocking on lockers just because he was with her. These things are unconscious. You just DO them.

Courtney: Yeah, I didn’t believe that Amy giving Matthew little assignments was going to end his OCD.

Emma: Surely in reality the assignments had great potential to harm?

s.e.: Yes, those kinds of things are *kind* of like techniques used in therapy, but they’re used with a slowly escalating approach and under strict supervision. And it gets me to another thing about mental illness that bugs me: when friends try to be my therapist. It downplays the importance of therapy and makes mental illness seem like a quirk.

Courtney: Agree with this too, but I think Matthew changed a lot and we don’t see it.

Emma: Is it a lasting change, do you think?

s.e.: Yeah, we see him responding to Amy, but not to therapy. Which is a telling commentary on how the author views both OCD and therapy, like OCD can be fixed if you just try hard enough and really want to get better.

Courtney: I didn’t get the impression he was “cured.”

PARENTS

Emma: So I think the gist is we don’t like Amy’s mother AT ALL.

s.e.: AGREED.

Courtney: She sucks.

s.e.: She’s awful, and a prime example of the worst kind of pushy parent of a disabled kid. Amy has no real autonomy even as her mom’s claiming to be pushing her to realise her potential. And also being so driven to push her daughter that she’s not paying attention to what’s going on with her.

Emma: I’ve met parents like that (thankfully my parents weren’t) but never to that extreme.

Courtney: I just can’t get over the idea that Amy’s mom paid people to be her daughter’s friends, not even as support people, but friends, like Sanjay and Matthew.  Especially in the beginning of her senior year.

Emma: Guilt, do you think? It’s one thing paying people to be aides and getting friendly with them and another to specify that they had to be her friends and introduce her to X new people each day and give Amy’s mom their names for a spreadsheet. That smacked of guilt big time.

s.e.: Does she not understand the difference between an aide and a friend, too? Like, I have been an aide. I was friendly with my clients. But there were professional boundaries, too. And dictating who she can be friends with? What even was that?!

Courtney: Exactly! I never had aides.

Emma: I had carers and also whilst at university had a variant of Amy’s peer support workers which seemed to work much better. I found some were professional, some genuinely cared (several of those I’m still friends with 10 years later) and sadly one or two people would pretend to really care about me whenever they needed money, but when they didn’t need money they never bothered. I would text and say hi and hear nothing back for weeks, then suddenly a few “hows it going Em?” type texts quickly followed by a “if you need any shifts covering…”  It’s an easily blurred line when you’re lonely or in a new city.  So I felt for Amy.

Emma: Do you think Amy’s mom and Matthew’s mom are deliberately opposites?

Courtney: Like overinvolved and not really involved at all? That could also just be YA though, like the “parents are never there” [trope].

s.e.: Yeah, Matthew’s mom is the classic distracted-busy-working-too-much-can’t-see-that-her own-kid-needs-help YA mom.

SEX

s.e.: I had mixed feelings about Amy wanting to test out sex, and was curious about y’alls thoughts on it. I’m also sad that the book didn’t touch on the lack of sex education for disabled people. It was just sort of “welp, she got pregnant,” and it didn’t explore why a super-smart, with-it woman would get pregnant accidentally.

Courtney: I think Sanjay had pity sex with Amy and that made me FURIOUS. And is anyone else bothered by Amy and Sanjay having sex when Amy was drunk?

s.e.: YES. Yes, I was. On the one hand, I want to be like “you go Amy, being sexually autonomous,” but on the other, she’s not. She’s drunk and…it’s just not really…

Courtney: Like did she really have control in that situation? Doubtful.

s.e.: Sanjay pretty clearly cruises everyone in the book, so it’s clear he’s just out for what he can get. And of course safer sex, etc. never come up.

Courtney: Well, Amy does mention STDs.

Emma: Is there a consent issue there? I think so.

s.e.: So a scene that could be empowering — a disabled character having sex — turns into one that’s not, because she’s taken advantage of.

Courtney: Exactly. And the idea that she would have sex with Sanjay to practice for Matthew seems incredibly naive to me.

s.e.: Yes, the “I need to practice sex” thing is…wtf? Given how important sex is to so many people, I find it hard to believe that someone would just have a throwaway experience to practice for someone they’re actively wanting to build a relationship with? I mean, it’s one thing if Amy just has a fling because she feels like it. But this felt more like her mother’s influence–okay, gotta practice up so I can be #1! And she would KNOW that Matthew would be hurt by it.

Emma: She SHOULD know. I do think sometimes people who need a lot of support can miss social cues/norms/whatever when younger because the therapy/support/being different side of things takes over and overrules ordinary life, which it obviously did with Amy. Was Amy’s mom expecting Amy to experiment with Sanjay do you think?  Part of her whole idea that Sanjay was a much more appropriate person to be Amy’s peer supporter and friend than Matthew?

Courtney: I didn’t even think of Amy’s fight with her mom influencing Amy. The entire thing made her seem not very socially advanced.

s.e.: Speaking of Amy having sex with Sanjay, I understand talking openly about how isolation and being marked as different can make it hard to pick up on social cues, etc…but this is kind of a big thing. Amy has clearly read widely and she’s been spending years observing students. She knows how important sex is. It’s important enough for her to be worried about it, so she knows that Matthew would care that she had sex with Sanjay.

Courtney: I honestly just don’t think she had the worldview to understand the implications of a sexual relationship.

s.e.: Really, many parts of the book made Amy seem very childlike, which was off-putting.

Emma: Amy’s decision to go through with the pregnancy was definitely a revenge thing. I thought the pregnancy plotline was a good one, and I started liking the book a lot more at that point because it wasn’t “girl and boy with disabilities” but suddenly “book with plot with disabilities as a part of it.” But you know, good is sort of relative.

s.e.: Yeah, the pregnancy plotline explored some real things, but not entirely well. I really wanted her to address the consent issues there, and she didn’t, and I really wanted her to address how disabled people are desexualised in pop culture and sexual education. Clearly Amy had been thinking about having sex, and she took NO precautions to prevent STIs and pregnancy?

Emma: Plus, from what I understand a lot of people with disabilities have worsening symptoms whilst pregnant because it can make mobility difficult and when you’ve already got mobility probs…

s.e.: Yes, Emma. She was apparently totally mobile and fine until the complications at the end of her pregnancy? I find that suspiciously convenient. Her pregnancy would be considered high-risk in the US and it wouldn’t be treated casually–and she would have started experiencing some mobility problems towards the end of her pregnancy due to shifting body weight and changes in her pelvic ligaments. That could have been acknowledged without making her seem broken and useless. And I disliked the needless drama of a complication that had absolutely nothing to do with CP–preeclampsia happens to people at all ability levels–making it seem like women with CP are incapable of being pregnant and safely carrying pregnancies to term. Which gets to the whole ‘only depicting high levels of impairment’ thing.

Courtney: I think the pregnancy was inserted so we would feel bad for Amy, and that just made it worse because she already has all these other problems.

Emma: The pregnancy was the point when I started liking Amy more, because she becomes more than a poor crippled girl. At one point Matthew explains to the adoptive parents about preeclampsia not being related to CP. Really, is it really necessary to mention that?!

COLLEGE

s.e.: I was irked by the author’s poor research, sending Amy to Stanford (where she has a hard time with access) and then acting like Berkeley is the only California campus with a high degree of accessibility when Amy decides to transfer. First of all, Berkeley has some serious access problems, especially in the dorms, and second of all, Stanford’s dorms are super-accessible. So there is just no way she would have been shoved in a corner to rot at Stanford. That just doesn’t make any sense.

Courtney: Also, let’s pretend for a minute that Stanford is actually like it is in the book. Why would she go there? It obviously doesn’t have the accommodations she needs.

s.e.: Right?! She visited campus, so she would have seen the housing. And what’s with her parents making housing decisions for her behind her back?

Courtney: Well, she did visit campus, but then her mom put her in that apartment next to the health center (which I also didn’t believe because she’s no longer a minor) but still…

s.e.: Yes, Amy should have been all over that campus with the access coordinator. And college housing choices are run by the student. You can’t just be randomly reassigned because your mommy says so unless you specifically designate a parent as your proxy.

Courtney: Also, at Stanford, Amy had no friends except that one guy who talked to her online. I just feel like the author makes Amy seem really pathetic.

Emma: She does, now you mention it. Especially with that one online friend turning out to be someone Amy’s mom had asked to be Amy’s friend.

s.e.: Yes, she does. And it’s so not in keeping with my university experience–I don’t know about yours. At both the small liberal arts colleges I went to and Berkeley, disabled students were quickly welcomed and had huge groups of friends. I mean, obviously, ableism was a problem and some people were dicks, but people didn’t treat disabled students like the plague.

Courtney: Nope. I had friends. Still have friends.

Emma: I didn’t really make friends in my classes, but I had friends in my flat and also amongst the other disabled students. Some of their aides got to be my friends too.

s.e.: Yeah, we definitely had the loner group at Goddard, which included a number of us disableds and some of us trans students. And I was involved with disabled students associations at Cal just because it was a big part of campus life.

DISABILITY COMMUNITY

Courtney: I also–and this could be just me–I know other disabled people might not agree.  But I don’t ever like books that pair people with disabilities together, like we never want to date able bodied people; we have to all date each other.

Emma: Interesting, I do and I don’t like books like that.

s.e.: It’s hard. Because at the same time it sends this message that we’re all broken and can only be with each other, but there are also disabled people who have relationships with other disabled people, and I like seeing that depicted. I think it comes down to the eternal problem of representation: Because so few disabled people are represented, period, those depictions are more heavily weighted.

Courtney: Exactly.

Emma: But sometimes hanging out with other disabled people can be slightly easier because there can be less having to explain.

s.e.: YES, Emma. Because these characters never see any disabled adults who are independent and confident and living by themselves. And like, Amy wants to go to Berkeley and she’s not interacting with disabled adults? You can’t swing a cat in Berkeley without hitting members of the disability pride movement.

Courtney: It made me wonder if Amy had met any other disabled people at all ever. Like my mom took me to a center once where that happened but it was really triggering, but for Amy to have a support group…

s.e.: The movie theatre manager was just this sad sack guy who hid in the office all the time. That’s what disabled adults look like in their world, I guess?

Courtney: Ugh. Hate it.

Emma: Amy had met other disabled people but didn’t like it (which pissed me off a lot).

VARIETY IN DISABILITY

Courtney: I wish the author would have made Amy mildly disabled instead of severely.

s.e.: I notice that most nondisabled writers pick the ‘extreme’ version of any given disability. A character can’t just be low vision, she has to be totally blind…a character can’t be autistic, he has to be nonverbal…etc. It’s really frustrating. And doesn’t display the real variability of disability. It also made me uncomfortable that Amy was the magical cure for Matthew’s OCD.

Courtney: I think it’s so false.

Emma: See, I’m undecided as to whether I consider Amy severely disabled or not. Because yes, she’s nonverbal but really her level of mobility seems great to me.Yes, she’d probabIy be able to do more (especially communicate whilst moving which was a big part of her not having friends) and have much less fatigue in a chair and I really think she needed a chair part of the time but it boggles my mind being able to walk that much and do a full day of school and not be dead on her feet.

I don’t know if this is just because I’m on the CP side of things but I felt like the author deliberately downplayed Matthew’s disability and exaggerated Amy’s somewhat.

s.e.: Yes, Emma, I definitely got that sense. There was a sort of “well she has it worse” thing going on. And I hate that in pop culture. “I shouldn’t complain because some people are ~disabled~.”

META

Emma: The author’s reasons for why she wrote the book annoy me. Here’s what she wrote about it. She met a girl with severe CP and was inspired or some such.

s.e.: I wonder if people who write books like this think at all about the impact of their writing on their children. Like, disabled kids grow up to become disabled adults. I definitely think about that with the plethora of “poor me, I have a disabled child” blogs out there.

Emma: I think this is going to become more and more of an issue as the current group of disabled kids/teens grows up with the prevalence of blogs and social media. There’s this pity/inspiring vibe. Don’t get me wrong, there are one or two brilliant blogs about that I know of, but so many are too far in the “poor me” stage.

Courtney: Like, no thanks, I don’t want your pity.

s.e.: And there’s no real thought to consent on the part of the child. I wrote about parent blogging in general for the Daily Dot recently. I think it’s really problematic. Children don’t have the capacity to consent, and they might not understand the ramifications…it just feels very exploitative.

Emma: Amy’s mom would probably have been too embarrassed to write a blog sharing how hard life was.

Courtney: I agree 100 percent. Yeah, she has a lot of pride didn’t she?

Emma: Actually, I could maybe see her writing a blog about how awesome her daughter was and the other disability parents finding it and being all, “Really?!”

CONCLUSIONS

Courtney: The general consensus is that we hate it, right?

Emma: It was fun and interesting in places, but the disability aspect sucked. I had quite the book hangover though.

Courtney: I don’t read about disabled kids anyway because of triggers, but it was just off the mark.

s.e.: It had the potential to be something really interesting, but the author just didn’t push it far enough. It was very much a freak-show presentation of disability and the disabled experience. And it wasn’t even an accurate depiction of the disabled experience.