Piecing It Together: A Story of Self-Discovery and Disability Awareness

A festive indoor celebration scene for the 34th anniversary of the Americans with Disabilities Act. The centerpiece is a large two-tiered cake decorated with the Disability Parking Symbol in blue. The top of the cake features lit candles and large number "34" candles. The cake is inscribed with the message "Happy 34th Anniversary of the Americans with Disabilities Act." The background is adorned with colorful balloons and streamers, creating a joyful and vibrant party atmosphere.

As we celebrate the 34th anniversary of the Americans with Disabilities Act, I want to share a story close to my heart. It's about my best friend, who, in her early thirties, has only recently come to realize she's been disabled for much of her life. Her journey of self-discovery is a testament to the complex and unique paths we each take to understand our own disabilities.

Growing up, she was that quirky, clumsy teenager who fell down all the time. Friends joked that someone needed to be nearby to catch her, and frequent ER visits were chalked up to her being "accident prone." High heels? A fashion no-go because of her wobbly ankles. Gym class? A nightmare, especially when a heart condition—misdiagnosed for years—made sustained exercise impossible.

Her life was a series of "quirks" that never quite added up. Hypermobile joints, ADHD symptoms, and a heart that often felt like it was drowning were all dismissed as part of her "unique charm." It wasn't until her mid-twenties that the pieces started falling into place with proper diagnoses: hypermobility, inappropriate sinus tachycardia, and an ongoing assessment for ADHD.

Reflecting on her journey, she realized how internalized ableism and a lack of confidence about what "counts" as a disability had prevented her from embracing her disabled identity. She had tried to fit into the mold of the manic pixie dream girl, cultivating her issues as endearing quirks rather than recognizing them as signs of her disabilities.

Dating, too, was fraught with challenges. She constantly worried about keeping up with potential partners who enjoyed activities like hiking and running—activities her body couldn't always handle. This anxiety stemmed from societal perceptions of disability hierarchies and the pressure to be "normal."

Her story is a powerful reminder that disability journeys can begin at any time and are often unexpected. Understanding disability through formal or informal diagnosis provides a unique lens and vocabulary to better understand oneself. It's a journey of discovery, relief, and pride.

On this anniversary of the ADA, let's celebrate not only those who fought for our rights but also those just beginning to understand and embrace their disabilities. Their stories are vital in the ongoing fight for diversity, equity, inclusion, and access.

The Crip Tax: Unveiling the Hidden Costs of Disability

A close-up image of a person in a white shirt holding a fan of hundred-dollar bills in their hand. The focus is on the money, showing several crisp banknotes prominently featuring Benjamin Franklin. The background is blurred, drawing attention to the hand and the cash.

Today, I want to talk about what is colloquially known in our community as the "Crip Tax." This term encompasses the increased cost of living that accompanies being disabled. Whether it’s accessible housing, home modifications, therapies, treatments, medications, or elevated electric bills to maintain medical equipment—these costs are substantial.

Selma Blair shared her struggles with the financial strain of managing her multiple sclerosis with the The Hollywood Reporter: "People perceive you as rich and famous but there were many years I’d have to take off work that deeply impacted [me]. If I don’t [get] my SAG-AFTRA insurance, then I don’t get my blood products." This sentiment resonates deeply with many of us who face similar financial burdens.

Accessible housing is often limited to more expensive areas, and making one's home accessible through modifications can be financially draining. The cost of mobility aids, which are often not covered by insurance, further strains our finances. But the Crip Tax extends beyond monetary costs. The psychological impact of being perceived as exploiting our disability for preferential treatment, when all we seek is basic equity, is profound. We face conscious and unconscious biases that affect our dating lives, career progression, and personal relationships.

In the workplace, requesting necessary accommodations can be a delicate balance. The fear of being perceived as a burden looms large. If we ascend to positions of leadership and conquer these prejudices, we are often met with accusations of tokenism and claims that we are less qualified and less deserving. On the other hand, asking for too many accommodations can lead employers to assume we will underperform. Add to that the often bureaucratic and adversarial nature of making such requests, and many of us simply won’t, effectively making our jobs harder and feeding into the false narrative of our capabilities.

Additionally, the medical field often discounts our experiences. If ailments aren’t found on routine tests, they are frequently deemed imaginary. This constant need to defend our reality is exhausting. 

Socially, the unpredictability of our health means we sometimes have to decline invitations, leading to perceptions of flakiness. Chronic pain and fatigue turn every decision into a game-time choice, based on our body's state that day. The Crip Tax also includes spending time defending yourself to people who don't believe you, expending extra energy from our already limited supply, defending our right to exist.

This tax is a lifetime of financial, psychological, and emotional burdens that seem only to increase.

What did I leave out? Sound off in the comments. Additionally, share your thoughts with NPR for an upcoming feature story.

Selma Blair on Getting “Back on Track” With MS Treatment: People Don’t “Get How Expensive It Is to Be Disabled”