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

By Adelle Purdham

Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #19: The Advocacy Issue). Click here to download the full magazine.

What does it mean to DO disability?

In high school, I was a competitive gymnast who volunteered in her spare time. I raked leaves for the elderly and visited a woman with Alzheimer’s Disease. I walked dogs in shelters, and collected canned goods for those experiencing poverty. I sold lollipops to raise money for organizations that combatted child slavery, and I taught children with difficult home lives how to read.  

I loved working with children, and I knew, one day, I would become a classroom teacher. I also harboured a strong desire to write. In a journal entry from my early twenties I scrawled the words, “I want to write a book — I just don’t know about what?”

One day, as a teenager cutting across the grass field of my high school, I grappled with the realization that I had volunteered with every group, it would seem, except those with cognitive and physical disabilities — a population I had been actively avoiding. I perceived disability as a weakness.

Standing on that grassy field, with the flush of shame threatening, I comforted myself: It’s okay, I thought, I just don’t do disability. With that one tidy thought, I dismissed an entire segment of the population. I reinforced the idea that to be disabled was a “bad” thing, and I distanced myself from that way of being in the world. If I couldn’t relate to disability, then disability wouldn’t happen to me or those I loved. I dismissed the idea that I had ever been disabled — as a dependent infant or when I was sick in bed — or that I may ever become disabled and dependent again, such as many of us do at the end of our lives — and during. In my quest to be a do-gooder, I lost the human thread. I wouldn’t come to see, until much later, how we are interwoven and interconnected; how each thread is a unique part of the quilted whole of “us.”

At twenty-eight years old, now a classroom teacher, disability entered my life in a meaningful way with the birth of my second daughter, Elyse, who has Down syndrome. With her arrival, the old stories I had told myself about “good” and “bad” ways of being could no longer hold, and my world view began to shift. The process of dismantling my own ableism — the belief that an abled body is better —  had begun.

In Elyse’s pregnancy, I allowed a worry to slip in that filled me with guilt: what if I didn’t love her the same as I loved my first daughter? I didn’t have to wait long for that particular fear to dissipate. The heft of each of my daughters’ small bodies inside my abdomen weighed the same in my mama heart. My feelings toward Elyse were fierce love, and once she arrived, I wanted the whole world to understand that love — and feel the same way. I no longer inhabited a world that was “them” and “me.” It was just “us.”

However, Down syndrome was a topic I then knew little about. I turned to books, and registered for conferences where I could learn. I encountered wonderful resources on the Canadian Down Syndrome Society and Down Syndrome Resource Foundation’s websites. I became involved with my local Down syndrome associations; first serving on the board in Hamilton, and later Halton region. I began to meet many individuals with Down syndrome and their families.

When she was an infant, I wrote my first article about Elyse and our family, a story about unconditional love that was published by our local newspaper. In my search for information about Down syndrome, I visited a nearby national book chain. I was dismayed to find there weren’t any books written by a mother to a daughter with Down syndrome — there weren’t any books about Down syndrome period. And this was during October, Down syndrome awareness month in the U.S., followed by Canadian Down Syndrome Week. “No books” would not do. I needed the stories of fellow moms, and to familiarize myself with Down syndrome, but most importantly, I needed to know that someone else cared. The missing books spoke volumes about those who remain invisible in society. I spoke to management, and they agreed to order several books into the store. I imagined another mother like me who might walk in, looking for resources, and not feel so alone. I believe this is how advocacy can begin for any one of us: small steps, seeking out information, asking for representation, sharing our stories, being or making the changes we want to see to create positive social movement and improvements in the right direction.

A turning point in my advocacy journey came in 2014 when Elyse was two years old and I attended The World Down Syndrome Congress (WDSC) in Chennai, India. The WDSC is an international Congress that occurs every 3 – 4 years funded by Down Syndrome International. I thought I was attending the conference to bring back cutting-edge research that would help families and individuals with Down syndrome in my local association. I somehow didn’t anticipate learning from a person with Down syndrome speaking up for themselves.

Among a throng of volunteers in brightly coloured saris, I met Susette from South Africa, mom to self-advocate Sheri Brynard, who ushered me into the room where Sheri’s presentation was about to begin. Behind the podium, Sheri, a petite blond with glasses, spoke about her life as a woman with Down syndrome. She didn’t shy away from recounting the difficulties and obstacles she encountered to become the world’s first qualified teacher with Down syndrome. For her perseverance in the face of incredible barriers, Sheri was awarded South Africa’s Woman of the Year.

But it was Sheri’s pleas for the dignity of her own life that grabbed at my heart and have stayed with me long past the conference.

“People like me,” she said, “are aborted. We deserve to live!” Her words shook the core of my understanding like thunder. The audience was electrified into silence by her powerful speech; every person in that room awestruck.

I came back from that congress knowing that the greatest teaching about Down syndrome would come from individuals with Down syndrome themselves. In the many experiences I’ve had since, this has proven to be true.

At a local Down syndrome association picnic, I became friends with special Olympics athlete Emily Boycott, and, after realizing we shared common interests such as gymnastics and writing, we became fast friends and were soon presenting in schools together. Even though I’ve since moved towns, Emily and I remain friends nine years later, and recently gave a keynote address as co-presenters at the Celebrate Down Syndrome Expo, an event connecting businesses and the Down syndrome community.

When Elyse was a baby, I read every disability-related parent memoir I could get my hands on: George Estreich’s Shape of the Eye, Martha Becks’ Expecting Adam, and later Heather Avis’s The Lucky Few. These stories helped immensely, but none of them were written by a young Canadian mom who had a daughter with Down syndrome. The question I needed answered, what I was searching for when I read those books was: what is the value of my daughter’s life?  I needed to know so that I could shoot the naysayers down — it’s true —but I also needed to know for myself.

I want to write a book — I just don’t know about what? Now I knew. I wanted to write a memoir about my experiences parenting Elyse as a way to advocate for her and other individuals with Down syndrome.

I continued to write articles for newspapers, blog posts, then magazines. The process took me five years, but in the hours between diaper changes, naps, preschool and eventually kindergarten, I wrote four drafts and finally had a complete memoir. That first book, my journey as a mother, remains unpublished — but I didn’t give up on my advocacy plans or my desire to reach a wider audience to share our love. I went back to school to complete my Master of Fine Arts (MFA) in Creative Nonfiction writing, and I leaned in to becoming a full-time writer. During my MFA, I continued to think and write about the immense value of my daughter’s life, but I also asked a second question that addressed my own feelings of invisibility: and what is my value as her mother?

The process to publication took me eleven years — the length of Elyse’s life — but I finally wrote the book that I needed all those years ago.

My memoir-in-essays, I Don’t Do Disability And Other Lies I’ve Told Myself (Dundurn Press) focuses on disability parenting, being a woman, and becoming a writer. The book is about a mother confronting her own ableism and making herself — and her daughter — seen; the true narratives push back against stereotypes and showcase the idea of “us,” and our interconnectedness. My greatest hope is that you will find yourself in my words; that you will feel like these are “our” stories. That you will know that you are seen. I see you. And I care. You are not alone.

I Don’t Do Disability And Other Lies I’ve Told Myself will be available wherever books are sold by its launch date of November 5, 2024 — but pre-orders are available now. Don’t be alarmed, as I once was, if you walk into a bookstore or library and I Don’t Do Disability isn’t on the shelf yet; do consider requesting a few copies. Our stories matter.

What does it mean to DO disability? You’ll have to read my book to find out.