I Don't Do Disability and Other Lies I've Told Myself

by Adelle Purdham

A raw and intimate portrait of family, love, life, relationships, and disability parenting through the eyes of a mother to a daughter with Down's syndrome.

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.

Genres: Disability, Memoir, Nonfiction, Canada, Biography

240 pages, Paperback

Published December 3, 2024

About the author

Adelle Purdham (she/her) is an educator, parent disability advocate, and the author of the memoir-in-essays, I Don’t Do Disability And Other Lies I’ve Told Myself (Dundurn Press, 2024). Adelle’s essays are finalists in several creative nonfiction contests, and her prose and poetry appear in literary journals, anthologies, magazines, newspapers and online. Adelle lives in her hometown of Nogojiwanong (Peterborough), Ontario, and teaches creative writing at Trent University-Durham.

Reviews

[Charlie - disableddaydreamer | itsbarbieparis (looking for mutuals) · Rating 3 out of 5]

thank you to netgalley and dundurn press for the ARC of this book.
this book was a mixed bag for me. i often read and review books with disability rep. i was expecting more on disability, activism and parenting someone with down syndrome.
the book really jumps all over the place, it felt a bit cumbersome and hard to read at times- not because the content but because it was just hard to follow the jumping timelines.
the book is more of a memoir about the author’s life. it isn’t necessarily a bad thing but less of what i expected.
i rated it three stars for these reasons.
however, the points and parts about disability and down syndrome were really great. i found the authors perspective as a parent of a disabled child to be refreshing in a sea of voices that are speaking only in negatives- i come from an autism background, as someone with autism, and i think of the autism mom vibes where moms wish to only exploit and discuss their child’s difficulties. this book was not like those voices. the challenges are acknowledged but in a positive way that is disability affirming and realistic.
i enjoyed the perspective of the author on this. i also learned more about down syndrome, which i enjoyed as someone who likes to read a variety of disabled experiences.

[Cait Gordon · Rating 4 out of 5]

At first, I thought this was going to be a book that was primarily about internalized ableism. While these themes are discussed, I realized quickly that it is a book about the author’s growth in many areas of her life.

And I really didn’t mind that the book bounces to different topics because I found the way Purdham told each story captivated me. It felt like I had been given permission to have insight into these intimate vignettes and discoveries in her life. It mattered to me that Purdham did not present herself as this flawless
advocate for folks with Down syndrome, but as a human made of stardust like the rest of us, trying to figure out life on this spinning rock.

As a neurodivergent and disabled person myself, I was glad when Purdham discussed how she originally was on a mission to be a type of savior, but quickly realized how much she can learn in disabled spaces from disabled people.

The only thing I wish was included was a content note in the chapter about Cassy. Just to understand that I would be reading about a SA survivor who was battling substance abuse and sadly died.

As a whole, found the book to be a quick read full of vivid and thoughtful tellings. Would recommend it to anyone who enjoys memoir essays that feel real and show growth.

[KileyV · Rating 2 out of 5]

this book is infuriating. on a craft level it's navel gazing and unaccomplished. in content, under-researched and unorganized. why was this marketed as a book as opposed to a collection of essays?
also - the writer takes one sentence to acknowledge that they are a privileged woman, meaning straight, white, and RICH it turns out. not a moment spent reviling the financial systems involved in having a child with disabilities because that wasn't her experience. not a minute to consider the intersection of disability at every other topic she alights on here.
perhaps the most damning thing I can say about this book is that after 200 pages, I know almost nothing about her daughter, her personality, or her disability.

[Books By Your Bedside · Rating 4 out of 5]

Thanks to NetGalley and Dundurn Press for the advanced copy of this title in return for an honest review.

Since becoming unwell myself a number of years ago, I've become really interested in reading books from like-minded people with similar experiences, and so this one really stood out to me. Having said that, I must admit that when I requested a copy of it, I assumed it was about Adelle's own disability, when actually it is about how she lives with her daughter's Down Syndrome.

My Mum used to teach in a school for children with physical and neurological disabilities, and so from the age of about six, I was always around children with a range of disabilities, and so I grew up with a different viewpoint on disabilities than others. But I'm aware that for a lot of adults, disability is so alien that they stare, they question, and they are often unconsciously (and sadly, sometimes consciously) ableist. And sometimes it takes something like having a child with a disability to really open your eyes, and so this book is a great learning experience.

What Adelle has really shown in this book is the unconscious bias people have towards disabilities. They may say things that aren't meant to be insults or mean, but they come out like it, and that can be hurtful. You can only understand the negative nature of these actions when you're the one in the firing line.

I did confuse myself at first because it said she was from Peterborough and teaches at Trent University so I thought great, she's in England, and so am I so I will really get an understanding of the situation. But it turns out she's actually from Peterborough in Ontario, Canada. So it wasn't quite as familiar to me, but it opened my eyes to something a bit different.

Adelle has been very open and honest and raw about her experience. I don't know for sure, obviously, how accurate it is, but my feeling is that she hasn't hidden anything. Everything good and bad and rough is in it, no matter how painful it must be to write and read about. And that makes the story sing. And as a reader that gives us a chance to connect with her and her family and her experience.

It flits back and forth from her childhood to pre-marriage, married and childless, one child, two children, three children, and back again. I am on the fence here. Part of me likes it like this, because we can see how different aspects of her life work alongside the rest. But then the other part of me wishes it was in chronological order, just for ease of reading.

It's a gut-honest piece of writing, about herself, her marriage, her childhood, her job, her wants, likes and dislikes, her struggles and triumphs, her children, her ableism, her experience of disability before and after motherhood. She's put a piece of her own heart and soul on the page and it is a really beautiful story she has given us. I recommend that anyone read it, whether you have a disabled relative, if you don't, even if you have no experience with disability at all, if you think you might be unconsciously ableist...it will open your eyes.

[Shannon · Rating 5 out of 5]

While I was expecting this standout debut memoir to mostly be about the author's experience mothering a daughter with Down's syndrome (and that is a major focus), she also writes honestly and with great vulnerability about challenges in her marriage, struggles during the pandemic, internal ableism, perceived failures as a mother, anger, mental health, nature and her journey to becoming a published author. Completely readable and highly recommended, especially for fans of books like The mourner's bestiary by Eiren Caffall. I really enjoyed this and look forward to reading whatever Adelle Purdham writes next!!

[Tina]

Full review soon!
Thank you to Dundurn Press for my gifted review copy!

[Not Sarah Connor Writes · Rating 3 out of 5]

Thank you to River Street Writing for sending me this book in exchange for an honest review.

3.5 - My review is complicated. I think Purdham is a good writer but this book also didn't talk nearly about disability or ableism as much as it was marketed. There's also an amount of privilege, and some hypocrisy when it comes to disability activism in terms of covid safety protocols that didn't sit well with me.

Read the full review on my blog!

[Enid Wray · Rating 2 out of 5]

Oh this is so hard not to enjoy a memoir when someone has put themselves out there…

I was totally with her for about the first ⅓ of this title… By the end of it I felt like I had been completely conned by this book.

I was more than a little surprised at how little of this really has to do with the daughter with Down Syndrome, or her being a parent of a child with Down Syndrome. Maybe it’s a matter of my expectations, but… that’s how I felt.

I was also completely put off by the essay in which she pesters her husband about having sex with someone else. What was the point of that one? None that I could figure then as I read it, or now as it has sat with me for a while.

I also disliked that there was no coherent narrative thread binding the essays together.

[erin_leigh_reads · Rating 5 out of 5]

I Don’t Do Disabilities And Other Lies I’ve Told Myself Is a heartfelt and powerful collection of essays (that read like a memoir), written by Adelle Purdham. Adelle courageously shares her experiences and observations of life, marriage, career and
motherhood, while simultaneously sharing her perspective of the emotional dichotomy of parenting a child with Down’s syndrome. Adelle also delves into societal prejudices against individuals with disabilities as well as her own ableist views.

I found Adelle’s writing to be so visually descriptive, lyrical, melodic and poetic. I think this is most evident in her essay titled “The Giving Tree” where she describes an escalating situation with her daughter Elyse. “Your delicate blows are like wayward branches hitting the windowpane in a breeze, more an annoyance, the worry of scratched glass. You lack the physical power of the wind, but you make up for it with a storm of emotion. Your storm is like a heavy black cloud that’s burst, and even though I know it’s coming, there’s no time to take cover before I’m soaked through.” This paragraph evoked such a visual representation, equating emotions to nature. I felt like I was there seeing it all unfurl.

As a parent of a child with an invisible disability, and the daughter of a parent with a physical disability, this book was extremely relatable and truly touched my heart. There was such a poignant truthfulness to Adelle’s observations on motherhood, life and disability.

Thank you so much to Adelle Purdham and Roverstreet writes for my copy of I Don’t Do Disabilities And Other Lies I’ve Told Myself. It was an honour to read and review this book.

Pub Date: December 4, 2024
Rating: I don’t like to give ratings for memoirs but I would 100% recommend this book to anyone.

[Laura Wershler · Rating 4 out of 5]

I DON’T DO DISABILITY: And Other Lies I’ve Told Myself
by Adelle Purdham

I love a book that takes me places I never realized I wanted, or needed, to go. Adelle Purdham’s memoir in essays did just this, winding my heart and mind around its various themes, making me ponder in news ways about love, marriage, motherhood, friendship, creativity, and disability. With searing intimacy, Adelle invites readers into her every-day world, then expands its meaning with facts, figures, intellectual exploration, and affecting associations.

Of these essays, I have my favourites, as any reader will. The pieces that convey Purdham's experiences as mother to a daughter with Down Syndrome and a person interrogating ableism—her own and society’s—are sparked with tender moments and fierce advocacy. I was also drawn to how she holds nothing back in writing, honestly and lovingly, about her marriage. And the last three chapters had me cheering for the writer, friend, and mother this memoir reveals.

I recommend this book to anyone who enjoys fresh perspectives on what seem to be everyday experiences, including our relationship, or lack thereof, with disability.

[Christina Myers · Rating 5 out of 5]

I was lucky enough to have a sneak peek of this book and totally, completely adored it. I had assumed, going into it, that it would be informative in terms of disability advocacy and education - and it was that - but it was also a fascinating exploration of so many things: marriage, aging, parenthood (and motherhood specifically), covid isolation, careers, gender roles. Life. It was so full of life. And isn't that really ultimately the point? Disability doesn't exist in some vacuum where nothing else is going on, it exists within a family, a culture, a world where holidays come and go, people have fights, dogs get adopted. All of it is woven together with such beautiful language and welcoming narrative. Ultimately, the author faces her own ableism with such honesty, allowing the reader to do the same - this is hard work, to face the ways one might have absorbed and reflected out messages of ableism in our culture.

[Alison Gadsby · Rating 5 out of 5]

I Don’t Do Disability is the title of the book and an essay in Adelle Purdham’s intimate and insightful collection, but this book isn’t just about her experience as a mother to a child with Down Syndrome. This collection offers poignant, self-aware and sometimes self-unaware reflections on life as a mother, writer, wife, friend and citizen in a world that continues to treat people with visible disabilities with a greater than arm’s length (please) fear and ableism. A collection that pulls us into the intimacies and complexities of marriage during a pandemic, the hilarities of a casual hike with three kids and a dog, and the spirituality of friendship and motherlove, I Don’t Do Disability is a book about the importance of human connection and a celebration of our own unique experiences in the incredible world we share.

[Joanne Culley · Rating 5 out of 5]

I Don’t Do Disability And Other Lies I’ve Told Myself by Adelle Purdham is a series of personal essays on a range of subjects, some of which are about the challenges of being a parent of a child with Down syndrome in an ablist world, others about the importance of connecting with nature, an encounter with an unhoused young woman, memories from her childhood, epiphanal moments from an international trip, and more. Purdham, who lives in Peterborough, is a writer, educator and parent disability advocate who teaches creative writing at Trent University.

[Kieren · Rating 3 out of 5]

I really enjoyed this book, but whilst it’s marketed as a book about mothering a disabled child, that’s not really its focus at all. Of the 19 essays, maybe 4 of them are about disability. Others are about the author’s relationship with her husband, her connection with nature, female friendship and the tribulations of being a mother. I came away from this knowing little more about having a disabled child than I went in with.

Disclaimer: I received a free copy in exchange for an honest review.

[Carmen G · Rating 5 out of 5]

Adelle Purdham artfully takes her readers on a journey through womanhood--its surprises and stresses, as well as the beauty of attachment. A mother's desire for creativity and autonomy in the face of the strum and drang of family life are portrayed with a graceful combination of realism and love that resonate past this debut memoir's last pages. Once I picked it up, I couldn't put it down.

[Sabrina · Rating 3 out of 5]

If you’ve picked this book up expecting it to be about disability, you should know that only 25% of it deals with the subject. The section on disability is incredibly compelling and a worthwhile read. The rest of the book is also well written, but I was longing for more chapters about being the mother of a child with Down syndrome.

[Kayla · Rating 1 out of 5]

Thank you to Goodreads for the ARC. Maybe I misunderstood what this was supposed to be, but it was one of the worst things I’ve read. The descriptions of her husband being inside of her were uncomfortable and in my opinion had nothing to do with what the book was about? Totally ruined it for me.

[River Street · Rating 5 out of 5]

Such an amazing and probing book. Can’t wait for other people to read it!

[Julie M. · Rating 4 out of 5]

A brilliant, vulnerable look at parenthood through the disability lens. The author bravely confronts her own ableism and struggles to reconcile her identity as a writer and a mother.

[Mike Broderick · Rating 3 out of 5]

This one didn’t work for me.
I did not connect with the author and in a book like this, that is most important.

[Matt Kratz · Rating 4 out of 5]

A good read about Down syndrome

[Jenny Barr · Rating 4 out of 5]

My 1st audiobook for Point Par Point

[Angela MacKinnon · Rating 5 out of 5]

I loved how this book was written. Every essay was different however each reading connected to the journey through the authors life, self-reflection on her own ableism over time and growth as a person. Her journey as a mother, a friend, a teacher a wife and an advocate for her daughter and her own happiness as a mother.

[Strawberry Bee · Rating 5 out of 5]

Review available and comes from Instagram @tealiterature.

‘I Don’t Do Disability and Other Lies I’ve Told Myself’ by Adelle Purdham is a book every wife, mother and woman needs to read. This book brings to light our own misconceptions of the reality that it’s ok to not know what to do and feel like we are failing. (Side Note - Just know that you are not failing; you are navigating through a unique experience that the universe gave to you knowing you will succeed.)

The novel is broken down into 4 parts:
- What it means to be a mother.
- Adelle and her husbands marriage as they navigate through raising children, the pandemic, and how life’s challenges can change love.
- Having a child with down syndrome (though the thought process, stories, and journey can apply to many families who have a child with special needs).
- Our connection to the natural environment if we give it a chance to be noticed.

This story purposely makes us question our unconscious bias, which is hard to do. For instance, what would your reaction be if you are told that your child will be born with down syndrome? Could you have balanced your marriage, three children, and a puppy in a small lodge during the pandemic? These are hard questions to answer, yet Adelle shares her first-hand answers through this collection of stories.

Thank you River Street Writes and Adelle Purdham for sending me a copy of this book for an honest review! Adelle, thank you as well for sharing your story with the world.

[Martha · Rating 5 out of 5]

I was lucky enough to read an advanced copy of this book and I couldn’t put it down. Adelle Purdham
writes in a way that pulls the reader in and with a universality that had me thinking of my own life within her experiences. This book gives a thoughtful glimpse into Adelle’s life as a parent to a daughter with Down syndrome and documents the ups and downs in a raw way that feels vulnerable, hopeful, and everything in between. I absolutely loved it and highly recommend this book.

[Kirsten Fogg · Rating 5 out of 5]

A beautifully written, propulsive collection of essays about one woman, one mother trying to do her best raising her daughters, one of whom has Down syndrome, in a society that alienates, stigmatizes, and relegates to the sidelines, those living with a disability. Raw. Tender. Honest. Uplifting. Powerful. (Full disclosure: I did my MFA with Adelle.)

[Kay Cee · Rating 4 out of 5]

A beautifully written reflection on motherhood and how ableism challenges the ways identity gives us permission to navigate the world.