Review: Hello, Universe

dark cover with a picture of a boy in pit/hole while 3 friends and a dog walk on the earth above.Genre: middle grades contemporary

Release date: March 14, 2017

Synopsis: Hello, Universe is told from the perspectives of four weens: Virgil, Chet, Kaori, and Valencia. Virgil is incredibly shy, possibly socially anxious, and lonely. Between school and home, he feels completely out of place. He’s also subject to intense bullying by Chet, which includes repeated use of the r-word. One day, Virgil goes missing. His friend Kaori (a self-proclaimed psychic) and her new client Valencia go on an adventure to find and rescue their friend.

Disabilities represented: learning disabilities, anxiety, deafness

Warning: The bullying in this book can get very emotionally intense and may be difficult to read, especially if you’ve been the recipient of bullying or feeling outcast due to your disabilities. I had to take repeated breaks during the novel.

Review: This book is an emotional roller coaster, with a lot to digest — but it’s also the kind of book that stays with you long after finishing. Kelly captures the intense feelings of what it means to be alone, of what it feels like to be bullied, of what it feels like to be perennially on the outside, looking in. But she also captures the warmth of her characters (Kaori, especially) and the hope that can come in building even one, true friendship.

One piece that Kelly captures incredibly well is the struggle of having a disability in a family and culture that pushes for “normal”. Valencia is hearing impaired, but has never been taught sign language. She is expected to read lips, which is hard enough — and even harder in a world where people do not accommodate. Little things, like facing the person you’re speaking to, can make the difference, yet so many people do not think to do them (or, worse, actively don’t care). Accommodations are important, both official ones and informal ones that we can do for each other. But it also opens up a discussion about American Sign Language — and why the dominant culture and hearing parents still see ASL as “less than”, as something to be avoided and ignored if any hearing can be captured at all. ASL is language. A valid, important, beautiful language. And more — ASL doesn’t just provide a way to communicate, but it also can be an integral part of connecting to Deaf culture. All of which raises questions about identity-first language, pride, neurodiversity and acceptance — important conversations to be having with our children.

I do recommend reading it with children or students, but I recommend doing so as a read-aloud or buddy read. There’s a lot to unpack, and I think most students would benefit from unpacking it with someone. For example, the use of the r-word in this novel should be unpacked together to discuss why that word is so offensive and painful to disabled communities (on top of the bullying way that it is used). It would also provide a great text for talking about what it means to be a friend and to welcome all into our communities, whether our classrooms or our neighborhoods. Overall, this book really captured my heart — wrung it out — and lingered with me for days… Five stars, and I understand why it won awards.

 

Review: It’s My Life

side view of a young girl with dark hair and a pink baseball cap with "It's My Life" in white text on over it.Genre: young adult contemporary

Release date: January 1, 2020

Synopsis: It’s My Life follows Jenna, as she struggles with growing up, figuring out who she is, and how her disability plays into that. She navigates family, friendship, and finding her voice, both at school and as the director of her own care. The author writes that this book is primarily not about her disability, but about a girl who “believes something about herself that is not true”. However, Jenna’s negative feelings around her disability drive the bulk of the plot points and are central to the story.

Disabilities represented: cerebral palsy, depression

Disclosure: I received digital access to the ARC in exchange for my review, which was shared on Edelweiss.

Review contains spoilers.

I found It’s My Life choppy and disorganized. First person perspective can be challenging for authors. In this case Jenna’s thoughts come through as pressured, fast-paced, and highly disorganized. The plot contained significant jump points with weak transitions. I often found myself wondering, “How did we get here?” or “Would this really happen?” I mean, would someone’s uncle really randomly help them complete lal the paperwork for medical emancipation out of nowhere? The text message conversations between Jenna and her crush are especially choppy, as was the whole “cat-fishing” scheme. Jenna spends so much of the novel as her alter-ego that I honestly forgot her name several times.

I wanted to love this book. I did. I think there is a real dearth of coming of age novels for teens with disabilities. They face the same struggles as any teen, but with the added stress of a society that doesn’t often accommodate them. I think that following Jenna’s struggle for medical autonomy, the constant decision-making, the risk/benefit analysis of “is this treatment worth it? are these side effects worth it? for what purpose?” would have yielded a whole depth of emotions and plot to explore. I would have loved for that to be at the forefront. Instead, I struggled to understand whether this book was about Jenna’s understanding of her disability (which was very, very negative), about her struggle to have a “normal” life, about her depression, about her friendships… I just don’t even know.

I will say that I very much thing that Ramey wanted to portray to the world that Jenna is capable and brilliant and perfect, as she is. I do not think that Ramey herself has a negative view of cerebral palsy. She especially portrayed Jenna’s family beautifully. There’s a moment between Jenna and Jenna’s dad, towards the end of the book. Jenna asks if he ever had to grieve the diagnosis of cerebral palsy. He talks about how, from the beginning, he saw what a fighter she was and how beautiful and perfect she was, as herself, completely. It was a heart cracking moment — and an unconditional love that I wish more people had the privilege to experience.

So, no, I don’t think that Ramey is intentionally ableist. I don’t think she believes the world would be better without Jenna, or that Jenna would be better without her disability. The ableism in this novel is the subtle stuff, the “I don’t like the word disability” stuff. Late in the novel, when Jenna meets another person with a disability, the other person says she runs a club at her college for students with disabilities. The other person, though, talks about how she prefers the term “differently abled” or something (and I rolled my eyes). Similarly, of course the happy ending for this novel is that Jenna gets a baclofen pump, the baclofen pump works beautifully, and Jenna’s whole life is changed! She is less physically impacted! Hurray! (Sense the sarcasm.)

I do think this is a risk when well-meaning professionals write from the perspective of a disability. We have to really spend a lot of time analyzing what we are writing to see if we are unintentionally reflecting the ableist culture we live in, or if we are using our writing to subvert that oppression. I think that It’s My Life could have done with a lot more subversion.