Disability Lead Member Joyce Otuwa is a first-generation Nigerian American with lived mental health experience. She is a double Illini from the University of Illinois Urbana-Champaign, and she currently works as a civil rights attorney in Chicago. Joyce believes in the deconstruction of exclusive systems through activism, access, education, and empowerment. She also believes in poetry, celebrating, and Lou Malnati’s deep dish pizza as they all bring her closer to God.
“I wish I would have known. I wish I could have told myself then how unique disability and its identity could be… how dynamic and individual.”
The disability pride movement has helped equip and empower an entire generation of people with disabilities. Undoubtedly, this is good — but what if you are someone with lived disability experience who feels the language of the movement may not describe you? What if pride is something you have never associated with your story? And what if your experience with disability identity is less static than others within the same community?
Two years ago, I was attending a retreat with my Disability Lead Fellows class, listening to a speaker passionately describe the pride he felt as an individual with a disability. I remember the sharp stinging as tears welled in my eyes while I struggled to say, “Yes, if given the choice, I would choose disability over a life without it.”
At the time, I was a person who met the legal definition of having a disability. I was also an attorney for a disability rights organization and a Fellow in Disability Lead's year-long training program for leaders with disabilities. I was deeply familiar with the disability culture, history, and experience, yet I could not say I felt pride. My lived reality included depression and anxiety leading to panic attacks and suicidal ideation regularly. So how could I be proud of an identity that could be inherently fatal? How could I be asked to choose a disability that might lead to death, over wellness leading to life?
I have come to learn that I can choose life while still openly acknowledging my mental health experience. Disability is layered and dynamic. There is no “one size fits all” in the understanding of one’s journey and identity. With so many manifestations (visible, invisible, physical, cognitive, chronic, etc.), everyone’s experience with disability is individual — including the way it affects us and how we choose to describe ourselves.
When I joined Disability Lead, I was still learning that a part of mental wellness is being able to distinguish my experiences of mental illness from who I am as a person. When I was the most sick, I identified as someone who experienced anxiety and depression daily, rather than saying I was a depressed or anxious person. This language more aptly described my journey with disability as ever-changing, while also allowing me to hope for a day when I could be mentally well instead of mentally ill.
Even now, after I have done and continue to do all my wellness work, I still identify as someone with lived experience of anxiety and depression. But thankfully, I am in a place where I can “sit across the table” from those dark thoughts and emotions that I no longer claim personally. I can now ask them what they are trying to say, and then meet them with the truth of who I believe God has designed me to be. It is through this difficult, conscious, and intentional unpacking in therapy, storytelling, and church that I have found wellness and personal freedom.
Equally as important, I have found that you do not have to be who you have always been. Just because I experienced mental illness in one way at a certain time does not mean I am shackled to any one story. My progress neither invalidates what I have lived, nor hinders my disability rights efforts — my life’s work.
What I know now is that I can remain committed to the work of mental health awareness while also being free from regularly experiencing anxiety and depression. That I can be proud of my wellness without having to be proud of the sickness.
There is no one way to express our stories. One person’s experience with mental illness may not be the same as mine. But by showing up and sharing authentically, I hope to give others unspoken permission to do the same.