Living as an Adult with Down Syndrome: Real Stories

March 13, 2023 | Denise

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There are a lot of misconceptions about Down syndrome. About what it is, how it affects a person and what that person is capable of. Down syndrome is an intellectual disability, but it is not a birth defect. The Canadian Down Syndrome Society defines it as "a naturally occurring chromosomal arrangement that has always existed and is universal across racial, gender, and socio-economic lines."

Disability activists often use the phrase "Nothing about us without us" to mean that disabled people must be included in conversations about disability. This is especially true for people with intellectual disabilities. With that in mind, I have tried to highlight materials that center on the experiences of people with Down syndrome themselves, rather than their family or caregivers. Frustratingly, there isn't a lot, especially featuring adults. Most of the literature on Down syndrome focuses on children. Most of the books that feature characters with Down syndrome are picture books. But children with Down syndrome grow up into adults with Down syndrome. And those adults deserve to see themselves in film and print too. They deserve to tell their stories.


Sam and Mattie make a zombie movie

Sam & Mattie make a zombie movie

Sam and Mattie, two friends with Down syndrome, rally friends and family to help them make a teen zombie movie called, Spring Break Zombie Massacre.

Monica & David (2009) - IMDb

Monica & David

Monica and David are in love and want an independent life. While they are capable beyond expectations, their parents, aware of mainstream rejection of adults with intellectual disabilities, have trouble letting go. Also check out Luca + Silvana, an Italian documentary about a couple with Down syndrome who wish to get married but encounter bureaucratic obstacles.

Friends' and Families' Perspectives

Many books about Down syndrome are from the perspective of a caregiver and often focus on how the disabled person changed the writer's perspective about disability. This is a valid experience but, while we read these books, it is also important to remember that disabled people have their own unique experiences and do not exist just to inspire other people.

Cover image of Mallko and dad

Mallko and dad by Gusti 

Argentinian artist Gusti brings his mixed-media artistic style to his scrapbook-like memoir about life with his son, who has Down syndrome. Gusti has also published the delightful picture book No Somos Angelitos (We are not Little Angels) which does a great job of challenging the stereotype that depicts all people with Down syndrome as innocent and sweet. It was inspired by his mischievous son and a reference copy is available in the IBBY Collection for Young People with Disabilities

Cover image of Writing with Grace : a journey beyond Down syndrome

Writing with Grace : a journey beyond Down syndrome by Judy McFarlane

Grace Chen, born with Down syndrome, dreams of being a writer. When Judy McFarlane was asked to help Grace, she realized she held the unacknowledged assumption that Grace would be a dull-eyed young woman who couldn't read, let alone write. With honest introspection, McFarlane delves into what it takes to face one's own prejudice. From a young woman who is marginalized by society, McFarlane learns how much courage it takes to follow a dream when everyone tells you it's impossible.


Cover image of Shut away : when Down syndrome was a life sentence

Shut away : when Down syndrome was a life sentence by Catherine McKercher

Catherine McKercher's brother Bill was born with Down syndrome and institutionalized at the Ontario Hospital School. Catherine discusses the pressure families felt to send away children with intellectual disabilities, as well as the abuse that residents experienced in these institutions. Bill passed away in 1995, but the last institution for people with intellectual disabilities in Ontario was not closed until 2009. For more on this part of Ontario's history, check out Broken : Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt.

Cover image of Pennhurst and the struggle for disability rights

Pennhurst and the struggle for disability rights edited by Dennis B. Downey and James W. Conroy

A comprehensive study of the history of the Pennhurst State School and Hospital (1908-87), a state-operated institution in Pennsylvania for people with intellectual and developmental disabilities that was closed for violating patients' constitutional rights. For a less academic look at the realities of life at Pennhurst, check out this 2018 documentary.

Judith Scott

Judith Scott, 1943-2005, was born Deaf and with Down syndrome. She was institutionalized for thirty years before moving to the San Francisco area to live with her twin sister Joyce. It was there that she discovered her love of and talent for fiber arts.

Cover image of Judith Scott : bound & unbound

Judith Scott : bound & unbound edited by Catherine Morris and Matthew Higgs

An in-depth look at the art and life of Judith Scott that accompanied the first major exhibition of her artworks in the U.S. In addition to illustrations of more than forty essential works, this volume includes a number of essays that trace Scott's artistic development and her place within the field of contemporary art as a whole. Please note that this is a reference item and cannot be checked out.

Cover image of Entwined : sisters and secrets in the silent world of artist Judith Scott

Entwined : sisters and secrets in the silent world of artist Judith Scott by Joyce Wallace Scott

An inside look at the life of the Scott sisters, as told by Judith's twin Joyce. For more on Judith's life and art, check out this beautifully illustrated picture book and this 2006 documentary.