July marks the start of Disability Pride Month! Crohn’s disease, and Inflammatory Bowel Disease overall, is covered by the Americans with Disabilities Act (ADA), a landmark civil rights legislation that was passed in 1990. The ADA effectively prohibited discrimination against those with disabilities by law, and although it has not completely eliminated obstacles for the disability community (far from it, in fact), significant strides have still been made towards progress for the disabled community.
While I’m thankful to live in a post-ADA world each and every day, I certainly faced my own struggles with embracing Crohn’s as part of my new life. One part of accepting my IBD diagnosis that blindsided me was the simple yet powerful act of accepting my disability -- I had anticipated the physical challenges that accompanied the surgeries and the colonoscopies, but I was not as prepared to tackle the internalized ableism that I had been raised with.
In particular, I found a great deal of comfort in reading more about those who came before me with chronic illness and disability. Just under a year ago, John Altmann and Bryan W. Van Norden wrote a piece for the New York Times on disability philosophy and the ancient Taoist philosopher, Zhuangzi. They proposed that Zhuangzi was the first to challenge the notion that being disabled was immediately a misfortune, instead questioning the assumptions behind what qualifies as merit or value in society.
Far too often, those with chronic illnesses are not at the forefront of disability pride -- after all, it is not always easy to express solidarity with a community when one has an invisible disability such as IBD. However, this may actually be one of the most compelling reasons to celebrate Disability Pride month! For me, I found that reading more about the history of disability theory and activism allowed me to gain a greater appreciation for the often underreported legacy of such advocacy. Although I may be a bit biased as a current university student, I’m a firm believer that education is the key to equipping ourselves for the uncertain future that lies ahead.
Take a second to check out the several articles penned by our CCYAN Fellows this year, particularly those from Digestive Disease Week! Furthermore, as you celebrate your own IBD journey during this Disability Pride Month, here are some books on disability and chronic illness that you may find helpful!
Disability Visibility by Alice Wong
Part 1, “I’m Tired of Chasing a Cure” by Liz Moore
Haben by Haben Girma
The Disabled God: Toward a Liberatory Theology of Disability by Nancy Eiesland
Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Tausig
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann
Crip Theory by Robert McRuer
Let us know what your favorite reads are!