ARC received from the publisher in exchange for this review:
I have learned, over the course of Echo’s life, that I can count on one of two reactions when I talk about our family: pity, or indifference. If I talk about how difficult it can be, emotionally and logistically, we get pity: people feel badly about how hard it is but they believe, or seem to, that the problem is Echo’s body, and therefore there is no cause for our audience to be engaged. If I talk about how much fun we have together, we get indifference: obviously there are no problems to be solved. I hate reverse-engineering conversations to achieve certain outcomes in any situation; I believe it’s the job of the speaker to be as clear, concise and truthful as possible, and leave the emotional reactions up to the recipient to manage. But in any case, it most often appears to be impossible to do regardless when talking about disability: we get pity or indifference, and it doesn’t seem to matter what I talk about or how.*
There is, also, a long history of the parents of disabled children speaking for or speaking over the disabled children themselves. The controversy surrounding Autism Speaks is one example. What we want for our children is often not what those children want for themselves, and when the parents are listened to more than the kids, this can lead to powerlessness and even abuse. “Nothing about us without us” is a rallying cry for a reason.
Primarily for these reasons, I try to approach memoirs written by the parents of disabled children with a great deal of caution: It is, for so many reasons, nearly impossible to do it right. You have an interested audience with entrenched ideas about disability that have no interest in being dislodged by your story, and a traumatized audience very sensitive to issues of over-reach and control. If there is a tightrope between these possibilities, it is the strength of dental floss, and you can’t be blamed for not wanting to trust your weight on it.
Emma Pivato has attempted this acrobatic feat with her book …and along came Alexis, a memoir of raising her youngest daughter, born in the late seventies with profound mental and physical impairments. Emma and her husband Joe have at every turn worked very hard to maximize Alexis’s enjoyment of and participation in life, and she describes these efforts in considerable detail.
Overall I enjoyed reading it and appreciated learning quite a bit about the history and development of inclusion for disabled children in our country, and I would recommend it, particularly to fellow travelers. There is a generational difference in tone and language that could make for a bumpy read, so judge accordingly.
Pivato is a published author of mystery novels, but this book is more descriptive than narrative. Recent memoirs tend to read like novels, with detailed description and dialogue, a narrative arc and denouement. This book is not that. There is, I think, simply too much to cover. If one narrative arc were selected for the book, too much would need to be left out. The writing style therefore tends to the straightforward and unadorned. I found it compelling, though, and read it through pretty quickly, especially considering my limited attention span these days and dependence on library audiobooks. It felt to me as if it reflected Emma’s own decades trying to navigate the pity/indifference continuum, as if she were trying hard to convey how impossibly hard this was and the stark and considerable sacrifices while avoiding the emotional language that might evoke pity. I find myself adopting this tone to describe my life with Echo sometimes.
Alexis’ disability and my kid’s are very different. Alexis has not been able to walk, speak, or see; her cognitive impairments are severe. But her height, body shape and size, and face are all within the average range. On the other hand, my kid is very bright, the most emotionally well-regulated person I’ve ever met, and a complete delight to talk to, but they don’t look like other people. The amazing thing, as so often happens with disability, just how much overlap and similarity there is. You might assume Emma’s life and mine would be very different, and the details often are, but the foundation is the same: two exhausted moms working pretty well constantly to expand their kids’ places in the world, not always perfectly, and often with a great deal of frustration.
Alexis is just a few years younger than I am. So much has changed in the decades between Alexis’ birth and Echo’s, and so much of that is due to the efforts of parents (mostly mothers) like Emma. Siblings of some of my friends were institutionalized at birth by their parents for disabilities they were advised were beyond their caregiving abilities; there was really next to nothing to assist or support parents who refused to do so and raised their disabled children in the family. By the time Echo was born, no one was suggesting to me that they should grow up anywhere but at home. In fact it had swung quite a bit to the “indifference” pole: obviously we have disability laws now so the problems are All Fixed and you won’t have any trouble! …Hrm.
I am so grateful to the efforts of that earlier generation of parents, and after reading this book I have a better sense of exactly how much of an advantage that’s been to us. The programs don’t work anywhere near as smoothly as their administrators seem to think they do–sure, you can get an IEP, but you’re going to be out of pocket and you’ll fight your kid’s teachers over implementing it every September, and yes, there are regulations about snow and ice clearing and we are dedicated to enforcing them, except when it’s really hard and then what’s a little ice under a walker, right? But the programs are there. I’ve never had to meet with a principal to argue why my kid should be able to attend that school, as Emma repeatedly did for Alexis. It did take ten years for the school board to get the desk and chair Echo needs to be able to sit in those classes without pain, and that’s with fights every September and oodles of doctor’s notes, but they were in the classroom, and no one tried to prevent it or made it hard to access assistants.
It’s not All Fixed by any means, but being able to start farther down the track means we’ve been able to cover more ground and with less resistance on the core elements in Echo’s life, so that we’re able to have some of the fights over terminology and ideology that Emma clearly has little patience with. I did find those moments jarring. I don’t think of Echo as damaged and I don’t want them to be “fixed.” My hopes and dreams for them are the same for any other parent and their children; I know the barriers will be discriminatory rather than real. I was shaken by Echo’s differences when they were born, and I did spend some time grieving the reality over my expectations, but I don’t think it took me as long as Emma seems to think is typical. By the time Echo was in kindergarten I was well over it. Emma at one point says that Alexis has dignity because she is slim, attractive, and has a pleasing personality; I think living humans deserve dignity because they are living humans, regardless of their body size or attractiveness. Certainly there are living humans who are treated without dignity because other people are put off by their appearance (facial differences, burn scars, etc.) and that’s not acceptable.
I’m being less critical than I would be of a contemporary. But I remember what it was like when Echo was born, and I had medical professionals telling me that their birth was an unfortunate event and we should be working to prevent a repeat, if I were to become pregnant again, and it took me a few years to find my feet and push back against this. Twenty-eight years of socialization in ableism doesn’t just go away when you have a disabled or physically different infant; it is a long process over years to untangle and learn better.
…and along came Alexis is a good history for those of us in various trenches of the accessibility fight, a reminder of where we came from and how we got to be here. I would recommend it as part of disability reading. The voices of disabled people should remain central, and the current status of things is vital to understand to have an impact, but this filled in a lot of gaps in the backstory for me.
* Not All Blog Readers. This is a general statement about these conversations, and we recognize and treasure the exceptions.