When discussing OCD, we often hear clinicians tout the benefits of ERP and people who overcome all the odds and ‘get better.’ For some of us, OCD either progresses to the point of disability or we have to manage OCD symptoms along with other health symptoms that qualify for the titles of ‘chronic illness’ or ‘disability.’
July is Disability Pride Month, where people with disabilities and chronic illnesses are welcome to share their experiences and discuss what they’re dealing with more openly outside of OCD.
You might be thinking, what does Disability Pride Month have to do with OCD?
More than you might think. The overlap between OCD and disability is broad and murky, with community members continually adding to the conversations and research about what counts and should be included in the overlap between these groups. Jessie, Mary, and Sandy here at the IOCDF’s Chronic Illness & Disability Special Interest Group have conversations about intersectionality often and below are our stories and stories from our community members who chose to weigh in as well.
The Americans with Disabilities Act (1990)
Disability Pride Month takes place every July in the United States to mark the passing of The Americans with Disabilities Act of 1990. Often referred to as the ADA, this legislation is an American federal civil rights law that prohibits discrimination based on disability. Disability discrimination has continually transformed alongside the legislation aimed at thwarting it. Before The Americans with Disabilities Act, it was standard practice to solely accommodate able-bodied people in American society's public, educational, and working spheres. Accessibility was a privilege afforded to a select few, and it wasn’t until the establishment of the ADA that public arenas were coerced into accommodating people who did not fit the societal ‘norm.’
It affords similar protections against discrimination towards Americans with disabilities as the Civil Rights Act of 1964, and the ADA requires covered employers to provide reasonable accommodations to employees with disabilities and imposes accessibility requirements on public accommodations.
The ADA was made law after many disabled advocates got out of their wheelchairs and left their mobility aids at the base of the famous (and inaccessible) Capital Building to crawl up the steps and demand that they be given rights as a protected identity group. ‘The Capital Crawl,’ as it became known, is central to the disability rights movement. The passing of the bill was a moment of great hope for disabled advocates that this would mark a paradigm shift in the way society perceived disability.
Thirty-three years later, much must be done to create a truly accessible society. The ADA has paved the way for similar legislation in Canada (at the provincial level), Australia, and the Netherlands, to name a few places with similar legislation. And while Disability Pride Month is not yet recognized outside of the US, disability activists spend July in reflection, celebration, and community gathering worldwide. Disability Pride, like LGBTQ+ Pride in June, is complicated for the community.
While there are many things to celebrate, including the collective achievements of activists, which help pave the way for a more accessible society, there is also much frustration and anger that many institutions remain inaccessible or many people remain prejudiced against disabled people. For more information and background on the American disability rights movement, the 2020 documentary “Crip Camp'' is very informative.
A Need for Community: The Chronic Illness/Disability + OCD Special Interest Group
Many individuals experience a chronic illness and/or disability in addition to a diagnosis of OCD. That is the case for SIG leader Sandy Robinson, who is physically disabled, chronically ill, and has OCD. Noticing the lack of resources and large population of individuals with these comorbid conditions, she started a Special Interest Group (SIG) through the IOCDF with Jessie Birnbaum and Mary Walters, LMHC, who also experience chronic illness and OCD. The SIG meets bimonthly to form a community and create wider resources for the wider OCD community about the intersections of these conditions. Though all the SIG members’ journeys are different (and we have many different diagnoses, with many not even identifying as disabled), our experience of having the challenge of navigating the world with disabling/ or chronic conditions (including OCD) very much unites us.
OCD as a Disability
Some individuals might consider their OCD to be a disability in itself. SIG member Kelly shares that we should “normalize identifying as a person with a disability simply by virtue of having OCD if that feels authentic to the human” based on the “breadth and depth of ways OCD has impaired one’s life and functioning” as well as the “intensity, frequency, duration, and content” of OCD. Characterizing one’s OCD as a disability differs based on individual experience, but if this resonates with you, please know that you are not alone.
Dealing with Stereotypes & Imposter Syndrome
For individuals who do not grow up disabled, it can be hard to fully understand and accept that label as one that encapsulates their experience. Whether it is intentional or not, the word “disability” has more negative connotations than it does positive in our current society.
There is also significant weight attached to the word. That is why some individuals might not identify with the word “disability.” When you picture an individual with a disability, your mind might immediately flash an image of a wheelchair user. While that can be the case, it does not cover the experiences of most individuals in the Chronic Illness/Disability SIG who have a chronic illness and OCD, both of which can be categorized as disabilities.
Most SIG members (who may or may not personally identify as disabled) don’t “look disabled” at all. That is because chronic illness and OCD are often invisible, and the idea of disability having ‘a look’ is a myth. With the often invisible nature of OCD and chronic illness, it can be commonplace for others not to understand one’s experiences, thus exacerbating the feelings of “imposter syndrome” some might face when trying to get accommodations or help for their disabilities.
Personal Experiences: Difficulties with Opening Up
SIG leader Jessie discusses these feelings after being recommended by her gastroenterologist to get an accessible parking pass due to her symptoms of Crohn’s disease. She shares: “I told my friends that I was filling out paperwork for an accessible parking pass, and they laughed at me. They said that those were for people who were actually disabled and that I was being selfish by taking spots away from people who really need them. My moral scrupulosity attached to this made it difficult even to consider myself disabled.”
Clinician-facilitator Mary had a similar experience. She shares: “One experience when I hadn’t received my diagnosis yet had a lasting negative impact on me. I opened up to my college roommates about my condition and my symptoms, and one told me she thought it was ‘all in my head’ and that I was ‘making it up.’ This exacerbated my OCD, and I was flooded with feelings of shame and judgment. I had many intrusive thoughts of ‘what if I am making it up’ and ‘what if I’m lying.’ It didn’t matter that I had to undergo corrective surgery and painful physical therapy. It didn’t matter that I had to change my lifestyle to accommodate my disability completely, and it didn’t matter to anyone else that I had to try dozens of medications to manage my pain. No one else could see it, so to them, it meant it wasn’t real.”
If you poll 100 individuals with disabilities and ask them what disability pride means to them, you might get 100 different answers. Disability pride is a challenging concept in a society that still struggles to accept disability as a neutral concept, let alone perhaps even a positive for some. Living with a chronic illness or disability does present extra challenges on an institutional and personal level. And for many, celebrating something that causes extra anxiety, costs, and planning might be daunting. Yet, disability pride month does give us a chance to reflect on the legislation and actions of activists and ordinary individuals that continue to make society more accepting and accessible for everyone.
In addressing the concept of disability pride, SIG member Kathryn explains, “for me, specifically, I think of how I used to HATE just the thought of using my white cane for the blind as I refused to use it. Nowadays, I don’t let my fears stop me from using the cane and being independent; instead, I embrace my blindness.”
Another SIG member added that disability pride means that “we matter and our existence and wellbeing is as important as others’, that our lives matter as much even if we don’t accomplish as much, and that we are people who deserve a chance and deserve to be centered.”
For SIG facilitator Sandy, when thinking about disability pride, says this: “Disability Pride means that all the facets of my identity (including my disability and chronic illness) are respected. I’m valuable not despite my disability but because of it. My disability is central to and only one part of my identity. I can call myself disabled because that is how I identify. And disability is as neutral to me as my brown hair. It’s just another form of human diversity.”
Disability, like OCD, is not something that comes in one mold or look but is unique to us. It should not be looked at as “lesser” or “bad”; instead, we should shift our focus to how we can make the world more accessible for those with disabilities, chronic illnesses or OCD.
To learn more about the IOCDF’s Chronic Illness/Disability and OCD SIG, please visit this link.
For more content from Sandy and Jessie, follow @chronically.courageous on Instagram.
About the authors:
Sandy Robinson, Jessie Birnbaum, and Mary Walters, LMHC, co-lead the IOCDF’s Chronic Illness/Disability and OCD SIG.