Sarah O'Connor

I received this book from River Street Writing in exchange for an honest review. 

“By not claiming space for my art, I am the aporia, the one feigning uncertainty, the one who pretends to others like I don’t know what it is I want to do,” (Purdham 187).

A long time advocate for people with disabilities as a mother of a daughter with Down Syndrome, Adelle Purdham discusses ableism, motherhood, nature, and more in her book of essays.

I have a lot of different thoughts about I Don’t Do Disability and Other Lies I’ve Told Myself. The first is that I think this book was marketed wrong. The title and summary imply a book that is going to go into detail about Purdham coming to terms with her own ableism after giving birth to a daughter with Down Syndrome, and while there is mention of this in a couple of the essays Purdham never goes as deep as I expected her to.

I Don’t Do Disability is more a book of essays and memoir than a look into or discussion of confronting ableism. Split into four sections: Mother, Woman, Child, Nature, many of the essays overlap with each other, certain events and situations repeated again though focusing on a different theme depending on the essay. I would have liked to see more variety in the essays, and truthfully I would have liked the book to have focused on disability and ableism as it was marketed. I wanted more insight on what it was like to learn to be a parent of a child with Down Syndrome after saying in the past that they were a person who “doesn’t do disability” and the work that it took to become the advocate she is today. I would have liked more on what it’s like being a mother and caregiver as I think caregiving is an incredibly important role but the difficulty of it is not talked about, nor are there many spaces for caregivers to get the help they deserve. I would have liked to see Purdham talk about raising her daughter with Down Syndrome while also raising her two daughters who don’t, the balance and difficulty of it. There is a hint of this shown in “The Giving Tree,” but overall I wanted to know about Purdham’s journey to becoming a parent disability advocate when most of the essays focus on motherhood, nature, and family life instead.

As such, we get more of a look into Purdham herself and her life and there are parts of the book where her decisions can be very difficult to have empathy for. There is Purdham pushing her husband into answering a hypothetical scenario of her sleeping with another man that he is visibly uncomfortable with but she won’t let go of, there is Purdham throwing a suitcase at her husband in frustration only to later understand it is because she can’t properly grieve a relative due to pandemic protocols. There is Purdham breaking pandemic protocols.

The lack of care for pandemic protocols were very difficult parts of the book for me to reconcile with, especially when the book is marketed as becoming aware of ableism and advocating for disabled people. To see this arguably selfish (and Purdham herself acknowledges privileged) decision to buy a cottage, have her family move to said cottage, and rent out her house when we were all told to stay inside and distanced from one another was frustrating. As someone who has chronically ill family members, the pandemic was a hellish time of anxiety where I realized I had no choice but to put my faith into other people being safe and the heartbreak and anger of seeing people who claimed to love and care for my family ignoring masking protocols, refusing to stay home and making excuses for why their bubbles couldn’t be small stays with me today. To read Purdham casually mention going to a friends place in the country, acknowledging that she shouldn’t because of pandemic restrictions and having no regret despite being a parent disability advocate made these parts especially difficult for me to read and even harder for me to have any empathy for Purdham.

But there’s also the Adelle Purdham who is aware of her own ableism and has worked increasingly hard to advocate for her daughter and others with Down Syndrome. There’s the Purdham who when finding a houseless woman in crisis stays with her, trying everything she can to find her shelter. There’s the Purdham who cares so much for her daughter’s and seeks to understand her daughter with Down Syndrome, knowing that she is capable of so much more than others think. There’s the Purdham who talks about the difficulty of her marriage during the pandemic and balancing a family life while working from home in quarantine which I think many readers will feel familiarity with. There’s the Purdham who refuses to exploit her daughter with Down Syndrome in her writing as many parents seem to do when having children with disabilities.

I think a good memoirist has to write honestly. They have to let their readers know who they are, the good and the bad, their strengths and their flaws knowing that not everyone will agree or even like the parts of themselves they’ve revealed. I’m amazed by memoirists for being willing to be so open about themselves with strangers, it’s an amazing quality and Purdham doesn’t shy away from it. She writes as herself and doesn’t try to defend her choices, only to understand them. And the essays themselves are good. I enjoyed Purdham’s voice even if her choices frustrated me at times, and did enjoy reading the book.

While I think the title and marketing of the book is wrong, Purdham is a good writer. I hope she continues with her activism and teaching people about their own ableism, I’d love to see her write a book exploring only that one day.

Publication: December 3 2024
Publisher: Dundurn Press
Pages: 240 pages (Paperback)
Source: River Street Writing
Genre: Non-Fiction, Essays, Disability, Motherhood, Memoir
My Rating: ⛤⛤⛤.5
Summary:

With the arrival of her daughter with Down’s syndrome, Adelle Purdham began unpacking a lifetime of her own ableism. In a society where people with disabilities remain largely invisible, what does it mean to parent such a child? And simultaneously, what does it mean as a mother, a writer, and a woman to truly be seen? The candid essays in I Don’t Do Disability and Other Lies I’ve Told Myself glimmer with humanity and passion, and explore ideas of motherhood, disability, and worth.