A Loved One’s Guide to Disability Pride
Photo by Trinette Reed via Stocksy
Eight years ago this month, I had my large bowel removed. I was unrelentingly sick the year prior after living with ulcerative colitis since age seven. Following several surgeries, I was given a J-pouch which offered me a renewed lease on life.
My recovery and overall growth would not be possible without my network of family and friends by my side. Our loved ones are usually our champions, but navigating caregiving and support in an ableist world is a challenge. My journey has given me insight into the complex relationship of disability, identity, pride, mental health, and everything in between.
July marks Disability Pride month. It commemorates the passing of the Americans with Disabilities Act in July 1990. Over almost three decades, it’s evolved to highlight and celebrate disabled voices. It was born out of necessity to rework the narratives and biases too often linked with disability. Many travel this complicated road yet these voices are hidden and dismissed.
Around 1 in 4 adults in the United States have some type of disability — whether physical disabilities, neurodevelopmental disorders like ADHD or autism, or even autoimmune conditions like my own — life is often shaped and dictated by disabilities by those who live with them.
As a fellow traveler and therapist that holds space for these voices, here is some of what I have come to understand and educate about disability, pride, and the support people need navigating this rough terrain.
Disability and identity are, for many people, inextricable.
For some loved ones, this might sound like a contentious statement; but it is neither good nor bad, simply reality. Most people in the disability community have at some point been counseled to not ‘define themselves’ or ‘create an identity’ on the basis of their disability. I’ve found this is painful and confusing guidance especially when, for a lot of us, much of our life has been dictated and influenced by our disability.
The accidental implication is that identifying too closely with your disability is a detriment. While this can be true, it’s just as true that the integration of one's disability in their identity can be its own form of liberation. The ableist world often communicates the message that disability is a battle that needs to be triumphed, a heartache that needs to be healed.
There’s also a constant encouragement to be more than your disability. This narrative encourages rejection of self. Following my final surgery people would often remark "you're good now, right? back to normal?" Although well meaning, it hurt a bit because it was not my reality. I was now facing a "new normal" and that comment contributed to my striving to be a version of myself I could no longer be. This is not a unique experience. The messaging communicated by the ableist world can contribute to people with disabilities disowning integral parts of themselves.
How can I support this?
Trying best to create acceptance. Acceptance of truth is an embrace of reality. For most people, their disability is not something that can be fixed or changed. It is a part of their existence and however they decide to accept it, belongs to them.
As loved ones and caregivers, it’s critical to open space for people to create their own narrative. This involves acknowledging all parts of a person. Creating a more accepting world amongst loved ones nurtures greater self-acceptance.
Disability pride is complicated.
The notion of pride is complex. For some people, it might be uncomfortable to embrace their disability. Pride is not an indication of someone's fondness for their disability. No one is required to love or even like their disability to have consciousness of their own dignity. Often people hold many different, complex, and opposing feelings — opposing truths can coexist.
I felt immense grief after my surgeries, and at the same time, gratitude and joy. It was a challenging adaptation but also an exciting opportunity to fully live my life again.
Pride exists to make the disability experience visible. It is an opportunity to champion the unique individuality and achievements of the voices often cast aside. When the world is less accessible and exclusion in spaces is routine, shame can develop. Shame is an emotion that communicates the false idea that “there is something irreparably wrong with me.”
How can I embrace this?
Life can be a complicated journey and navigating the experience of caring for a loved one with a disability is no exception. There are heartbreaking, challenging moments and at the same time, beautiful and inspiring ones. Make room for all the complexity. Challenge your own perceptions and understanding of your loved ones' disability. Rewrite the narrative you may hold about what it means about them and their livelihood.
Pride is a declaration of self-worth. It is a chance to challenge the notion that disability is something to be pitied, a cause for regret. This can generate connection and create community and it permits people with disabilities to be unapologetically themselves.
Avoid the righting reflex.
I’ve seen loved ones and caregivers fall into the ‘righting reflex’ trap. In psychology, the righting reflex is the tendency to want to help others by offering solutions to their problems. While the intention is good, the effects can actually be counterproductive because it drives disconnection.
How can I avoid this?
Instead, give your loved one the safety to bring you into their experience and always remain curious. Being supportive often means straddling the expectations imposed in an ableist world and the reality of disability.
If as a caregiver or a loved one you’re struggling with the righting reflex or other aspects of your loved ones disability, you don’t have to navigate this alone. I’ve found that working through these beliefs in therapy can be incredibly helpful for both you, and your loved one. Therapeutic approaches like Acceptance and Commitment Therapy or Dialectical Behavioral Therapy can help reframe the narratives you know.
On this Disability Pride month celebrate, amplify, and listen to the prideful voices of people with disabilities.