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Common Reading 2023: Excerpt from Being Seen, "We Have Always Thrived in the Castle: Defying Ableism to Become Yourself" by Elsa Sjunneson

Excerpt from Being Seen, "We Have Always Thrived in the Castle: Defying Ableism to Become Yourself" — Elsa Sjunneson

"We Have Always Thrived in the Castle: Defying Ableism to Become Yourself" is an excerpt from Elsa Sjunneson’s memoir that discusses how she has dealt with both internalized and external ableism because of her deaf-blindness.

Original Text

Discussion Questions

  1. How can society better accommodate the needs of deafblind people and other people with disabilities?

Class Activity

Find more stories from deafblind people sharing their own experiences. These can be books, essays, podcasts, videos, or any other form of media created by a deafblind person. Pick a story to share with your peers. Give a summary of the story and share something you learned from it or that you found interesting.

Introduction — Boenell Kline

“There is no cure” were the words I heard from my doctor in the emergency room. These four little words changed my life forever, as I went from traveling the world to staring at the accessible parking placard hanging from my rearview mirror. This is not the life I imagined. At first, I hated my body. I hated myself. I was ashamed of who I was, and more importantly, who I was no longer able to be. But like Sjunneson, I have had pivotal moments over the last decade that have changed me forever, how I live my life and how I view the world.

For those of you who share my disabled identity, you will find a friend in the pages of this book who understands your experiences, thoughts, and hardships. Sjunneson speaks to our disabled identities and calls for us to embrace self-acceptance, community, and activism. For those of you who are nondisabled, Sjunneson will provide an opportunity to enter the ‘realness’ of someone who is disabled and to hear the struggles and the emotions that often go unspoken.

In the battle ‘to becoming’ Sjunneson, she described failing herself by hiding who she was, being ashamed of her differences, and trying to fit into a societal mold that was not meant for her. Self-stigma, passive suicidal ideation, and self-harm permeated Sjunneson and drove her thoughts and behaviors. However, there came a turning point where Sjunneson decided that these aforementioned weights and self-neglect would be no more. She began to embrace who she was, engaged with other disabled folks, and used her once-silenced voice to promote change.

Where do you resonate with the writer’s experience/emotion/thoughts? Where in this writing, do you see the experiences/emotions/thoughts of someone you love who has a disability?  How does this selection challenge your previous notions of disability or disabled people?

Related Videos

"DeafBlind: Blind But Not Blind | JennyLynn Dietrich | TEDxSalem" from TEDx Talks

"Let me introduce my favorite series! Vorkosigan Saga by Lois McMaster Bujold" from Chloe Frizzle

Additional Resources

SU Disability Services

Check out SU's resources for students with disabilities.

Elsa Sjunneson’s Website

Check out the author's website for more about her and her work.

My Favorite Bit: Elsa Sjunneson Talks About BEING SEEN

In this article, Sjunneson shares what her favorite part of Being Seen is.

Learning from disabled folks on how to dream of and carry out a kinder and more accessible world

This page includes illustrations based on stories from various disability activists, including Elsa Sjunneson, and descriptions and explanations for each illustration. There are also additional resources for learning about disability justice.

Disability Visibility Project

The Disability Visibility Project is an online community that creates a space to share disability stories and culture. They publish things like blog posts, essays, and podcasts.

People with Disabilities | NAMI: National Alliance on Mental Illness

This page provides mental health resources for people with disabilities and explains the barriers that people with disabilities face when accessing care.

Helen Keller and the Representation of Deafblind People

This article examines how deafblind people have been portrayed in media.

About the Author

Elsa Sjunneson is a professor, historian, media critic, author and editor. She is also Deafblind. Her book Being Seen: One Deafblind Woman’s Fight To End Ableism came out in October of 2021. It is described by Sjunneson as a snarky but thoughtful look into how media shapes disability in the modern world.


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