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I have often said that the journey of most disability parents starts in fear. In the over 200 interviews I’ve done over the years, fear–at least initially–is a consistent theme. It was our own story as well. And while I feel so very different about disability now, I’m not sure I would or even could change my initial reaction to finding out my daughter would be disabled. I was afraid. Disability is SO many different things, and while it is not inherently sad or bad, that’s not to say it never is. And while I want the population at large to re think the way they currently think about disability–and by rethink I mean completely change our collective effed up viewpoints–I also think that grieving is a part of the process for parents of children who are disabled and/or medically fragile. It feels like a bit of a catch 22, doesn’t it? “Everyone! The way you think about disability is completely wrong. Your pity is damaging, not helpful! Quit trying to “fix” disabled people! But parents it’s totally OK if you cry when you find out your child is disabled, because well it is a lot to process.” But you can’t force (and you certainly can’t shame) people into a different viewpoint or frame of mind, but you can educate and hope that people evolve.
And so while I’m OK with the idea of parents feeling all sorts of feelings when they first find out their child is disabled–scared, sad, mad, what-have-you–I think it is so very important for these parents, above all people, to evolve. I include myself in this narrative. I have, and continue to evolve in my ways of thinking about disability. I owe the majority of my evolution to listening to first hand perspectives of disability, that is to say, disabled adults. (And while this may seem like splitting hairs to some, it is a different thing to hear from disabled adults who were also disabled as kids.)
Whether you’re new to the disability/medically complex world or not, here are 5 books that can help parents of children with disabilities. Most of these I’ve read, a couple I haven’t. I’d love to hear your recommendations as well.
Far From the Tree
By Andrew Soloman
So this is not a book written solely from the perspective of adults with disabilities and truthfully it isn’t only about disability, however it just so happens that most of these stories are about children and adults with disabilities and the families who raise them. The title references the old adage “the apple doesn’t fall far from the tree” but Andrew Soloman, who grew up as the gay son of conservative parents, knows all too well what it looks and feels like when the apple does indeed fall “far from the tree.” Over his journalism career he came to realize the similarity he found in disabled people being raised by non-disabled people to his own life as a gay son to not gay parents. As I said, not all the chapters focus on disability, but most do–autism, down syndrome, deaf, dwarfism, schizophrenia, and more. This is such an interesting and eye opening book and I was also really grateful for the chapters on transgender as well. Overall this book is just phenomenal and will make you think about all the variations of being human in this world.
No Pity: People with Disabilities Forging a New Civil Rights Movement
By Joseph P. Shapiro
Truthfully, I’m still half way through this book but it is so wonderful and again, so eye opening. I think this might be THE book to read about disability and disability rights. This book teaches a lot more specifically about the disability rights movement, the history of disability in America, and it is just so dang full of valuable information and insights. This book will give you so much to think about in terms of our tangible environment and what we are doing (or not doing) as a society to bring inclusion to the forefront. And yes, this book is written in collaboration with many different disabled adults.
Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew
Edited by Stanley D. Klein PhD and John D. Kemp
This is not a book I’ve read, but it’s on my list. Overall this book has good reviews (even some from disabled adults) and you’re going to get a wide variety of experiences and viewpoints and that’s really what we’re going for here.
If At Birth you Don’t Succeed: My Adventures with Disaster and Destiny
By Zach Anner
I’ve actually mentioned this book before, but I’m mentioning it again because it’s so funny, brilliant and relevant. Zach Anner has cerebral palsy and is also an actor, tv writer and producer. He’s had a stint with Oprah for crying out loud. But really this book follows the very interesting journey of his life so far, and he talks about a lot of things we don’t often hear about when it comes to disabled people–like love and sex. Nearly everything is couched in humor, but he is reflective and honest. So, so good. .png)
Laughing at my Nightmare
By Shane Burcaw
This is another one I haven’t actually read, but is again on my list. Shane has SMA or spinal muscular atrophy and I follow Shane and his Girlfriend on Instagram. I really appreciate what they say–both in actual words and through their actions. Specifically, I enjoy seeing a positive and real life interabled couple just doing their thing. Sadly, this is also where they get a lot of hate. It’s really horrible, but I’m glad they show it and talk about it… the more you know. Anyway, Shane seems like a funny, stand-up guy and I really want to read his book and hear more about his life, and his take on all things disability.
Staring Back: The Disability Experience from the Inside Out
Collection of poetry, fiction and non-fiction all written from different disabled writers.
Surprise #6. I know I only said 5, but this one looked too good not to include! No I haven’t read it, but looks like a good one. The title alone speaks volumes.
Getting a hold of a book might take a day or two, so in the meantime let me encourage you to read some of the amazing interviews I’ve been so lucky to be a part of:
Lisa who was born with spina biffida.
Rebekah who is a paraplegic.
Elizabeth who has a fused spine and pelvis, and one leg.
Catherine who was born with congenital muscular dystrophy.
Corinne who has EB, or Epidermolysis Bullosa.
Jessica Smith who was born with a limb difference.
Amanda who has cerebral palsy, rheumatoid arthritis, Ehler-Danos Syndrome, Hashimoto’s and more.
I’d love to hear what other books or sources you’d recommend for hearing about disability from a first-hand perspective. Disability parents, what has helped you most evolve over time in how you view disability?
I’d recommend Care Work by Leah Lakshmi Piepzna-Samarasinha and Please Read This Carefully by Karen Havelin.
Thank you! I’ll check these out.
I recommend my own book – Say Hello. It’s a memoir on living with Ichthyosis, with some practical advice for parents and teachers and others. I’ve Mentioned lots of disabled people within. http://www.carlyfindlay.com.au/sayhello
Carly! I’m so glad you included your book. You also have another one coming out soon that will be helpful for parents as well right?
Thanks, Miggy! I’m putting these on my list to read. I have read Far From the Tree, excellent book and I liked that it covered so many different stories.
I’ll give a shout-out as well to a little blog I started reading that has truly opened my eyes to disability and all that it means: This Little Miggy. 🙂 You write about these issues so well and have given me a lot to think about. I have really appreciated how you put yourself out there, your thoughts, your views. And have highlighted other families and their experiences. Especially enlightening have been the interviews with adults with disabilities. I realize we’re all out there just living our lives. I may have an easier time going up the steps as someone else may, but that doesn’t mean their life is harder than mine. Just different in some ways.