It’s Easier to Feel Disability Pride for My Son Than Myself
Learning to center my own experience
In America, we celebrate Disability Pride each July to commemorate the signing of the Americans with Disabilities Act. Disability is a natural part of human diversity. The CDC states, “More than 1 in 4 adults in the United States have some type of disability.”
In my thirties I was a healthy, married, mom of two who never gave any thought to disability. As a marketing director for internet startups, deadlines, travel, IPOs, and launches were my drugs of choice. I assumed I’d continue to perform at a high level and we built our lifestyle around that belief. But slowly, my energy began to wane and I felt sick often. To reduce stress, I transitioned careers and became a licensed neuromuscular therapist. Opening my own massage clinic allowed me to enjoy a slower pace of life.
Then, at forty, without warning, my health concerns became critical. I had trouble swallowing, and my right thigh began to atrophy. I lost over 30 pounds and a walk from the couch to the kitchen for a glass of water made my heart pound out of my chest. I felt drained of physical, emotional, and mental strength, yet sleep often eluded me. Fatigue, fevers, and pain plagued my days and nights. Eventually, a rheumatologist diagnosed me with multiple, incurable, and serious autoimmune diseases and said words I’ll never forget, “I promise to do my best to improve your quality of life.”
Then, my young son Kai began losing his sight.
Due to my own illnesses, I could no longer work. Medical management and the related insurance bureaucracy filled my days. My family downsized substantially to survive off one income. Unfortunately, I couldn’t just rest and recover because I needed to learn how to advocate for my son. I knew nothing about educational access or disability rights. I threw myself into the blindness community, learning all that I could about how to advocate for accommodations while setting high expectations. The community embraced my participation and I developed an incredible group of blind friends. Eight years later, Kai graduated as valedictorian of his local public school. He went on to advocate for access and inclusion at university and the workforce.
My blindness advocacy didn’t stop with his independence. In the last few years, I’ve attended patient engagement summits with Johnson & Johnson and Prevent Blindness. I recently had the opportunity to lobby on Capitol Hill for the Early Detection of Vision Impairment Act. If funded, this program would help to detect vision impairments at birth. Fighting for my son’s rights came naturally to me. Watching him adapt to progressive sight loss was equal parts difficult and awe-inspiring. Blindness could have shut him down, but he’s thriving.
As a writer and creator for Navigating Blindness, I’ve prioritized the voices of my son and blind adults. (Check out their disability pride over on our Instagram.) But as a chronically ill woman, I often struggle with my own voice and place in the disability community. I struggle with self-doubt and issues of identity.
Who am I now?
57 years old
Empty nester
Recently divorced
Living alone for the first time in more than 32 years
Dog-mom
Disabled
As I moved into my new space, I found myself unpacking crates of belongings plus years of internalized ableism. I wondered, why was it easier to feel disability pride for Kai, than for myself? I, too, have adapted and made awe-inspiring changes.
My health still demands intense management including expensive monthly infusions of biologics, weekly injections of immunosuppressants, plus daily medications for energy and pain management. I must closely monitor my energy expenditure, avoid crowds, and carefully manage symptoms and flares. So, with all that in mind, today I’m taking a courageous step to center my own experience and voice as a disabled woman.
Hi, I’m Kim. I have disability pride because living with multiple autoimmune diseases has given me the gift of presence. I’ve grown acutely aware of how quickly life can change. The cyclical nature of AI disease has taught me more self-compassion, the art of letting go, and gratitude for the love and beauty that surrounds me.
Do you struggle to find your place and voice within the disabled community? In which ways do you embrace or struggle with disability pride?
A summary of landmark disability events:
1973: Section 504 of the Rehabilitation Act, (504 Plan) provides protections from discrimination in any program that receives federal funds. This law also protects accommodations such as extra test time and use of assistive technology.
1975: Individuals with Disabilities Education Act (IDEA) guarantees the right to a free and accessible public education with important protections like the Individualized Education Program (IEP) that allows kids like my son to learn braille and utilize a white cane.
1990: Americans with Disabilities Act (ADA) expanded disability rights beyond the federal/school setting and into businesses and workplaces. (As a GenX’er it’s hard for me to believe that this law didn’t pass until after I’d graduated from high school.)
1999: Olmsted Supreme Court Decision says that disabled individuals have the right to live and receive services in their own communities instead of isolated and hidden away from society in institutions. (This decision is currently under attack. For more information visit DREDF.)
