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”

Gatekeeping Magic: The Exclusionary Impact of Disney's New DAS Rules

A view of Walt Disney World in Orlando, Fla

As we celebrate Disability Pride Month, a time to honor the achievements of the disability community, we must also address the setbacks that threaten our progress. The Walt Disney Company's recent changes to its Disability Access Service policy serve as a poignant reminder of how easily strides toward inclusion can be undermined.

Growing up in California, Walt Disney Parks & Resorts were more than just a destination; they were a magical escape from the daily challenges of navigating a world not designed with us in mind. As a wheelchair user and someone living with chronic pain, trips to Disney offered a rare respite where the focus was on fun, not on proving my worth or fighting for basic accommodations. However, Disney’s latest policy changes have turned this escape into yet another battleground for disability rights.

On May 20, Disney instituted a more restrictive policy on who qualifies for its DAS program. Previously, those who "have difficulty tolerating extended waits in a conventional queue environment due to a disability" were eligible. Now, only individuals with "developmental disabilities such as autism or a similar disorder" can request a return time. This change has left many in the disability community, including those with invisible disabilities, excluded and disheartened. This exclusion not only diminishes the magic of Disney but also underscores a larger issue: the gatekeeping of what counts as a disability.

Disney's decision to narrow the criteria for DAS passes is a step backward in disability inclusion. By focusing only on visible or specific types of disabilities, Disney is disregarding the diverse and often invisible challenges that many of us face daily. This policy shift exemplifies a troubling trend where organizations prioritize convenience over comprehensive inclusion, making decisions without consulting key stakeholders from the disability community.

Moreover, too many believe they have unfettered access to our medical histories, forgetting that disclosure of disability is a personal choice. Often, discussions of disability can be triggering and traumatic. The exhaustion and raw exposure of needing to "prove" our disability can become overwhelming. That lack of empathy is dehumanizing.

Historically, Disney has been recognized for its disability inclusion efforts. A spokesperson from Disney told Yahoo News, “Disney is dedicated to providing a great experience for all guests, including those with disabilities.” However, the recent policy change contradicts this commitment, revealing a lack of understanding and empathy toward the diverse needs of the disability community.

As we celebrate Disability Pride Month, let’s remind organizations like Disney that true magic lies in creating spaces where everyone can feel welcome and valued.

Disney's new theme park disability policy sparks anger

The Ripple Effect: How Staying Present Can Transform Advocacy

Still from Peaceful Warrior. Dan sits atop an old beat up car looking pensive. His mentor, Socrates, looks on with his had down.

In a pivotal scene from one of my favorite movies, "Peaceful Warrior," a dialogue unfolds on a bridge that has profoundly influenced my approach to advocacy. Dan, consumed by the hustle of life's demands, is suddenly plunged into the river by his mentor, Socrates. It's an unexpected, jolting act that empties Dan's mind of all but the present moment. This scene metaphorically mirrors the journey many of us embark on in the realms of disability advocacy and the pursuit of diversity, equity, and inclusion (DEI).

As a disability advocate and someone who navigates the complexities of living with chronic pain and a visual impairment along with Cerebral Palsy, I've found that embracing the present is not just beneficial but essential. The advocacy road is long, often met with setbacks and a slow pace of change that can wear down even the most resilient spirits. Yet, it's in these moments, when we're fully present, that we find the strength to persist.

The bridge scene from "Peaceful Warrior" serves as a powerful reminder of this. When Dan is thrust into the river, all distractions are stripped away, leaving him utterly immersed in the "now." This is the essence of mindfulness — a state of being entirely engaged with the present experience, devoid of external distractions. For advocates, this focus can be transformative, enabling us to navigate adversity and continue our work with renewed vigor.

Incorporating mindfulness into our advocacy efforts, especially within DEI initiatives, can act as a catalyst for systemic change. It allows us to approach challenges with clarity, ensuring our actions and words are guided by a deep understanding of the issues at hand. Moreover, it helps us to maintain our resilience, a necessary trait for navigating the demanding path of advocacy.

As we push for more inclusive and equitable workplaces, the principle of staying present guides us. It reminds us that every moment is an opportunity to effect change, to challenge biases, and to advocate for those whose voices are often marginalized. This focus not only sustains us but also amplifies the impact of our efforts, creating ripples that extend far beyond the immediate.

In embracing the present, we also open ourselves to learning and growth. We become more attuned to the experiences of those we advocate for, fostering a deeper empathy and understanding. This, in turn, enriches our advocacy, making it more effective and impactful.

As we continue to champion the causes close to our hearts, let's remember the lesson from that bridge — the power of presence. It's a tool that can help us navigate the ebbs and flows of advocacy, keeping us anchored in our mission and resilient in the face of challenges.

The Unseen Battle: Chronic Pain and the Performance of Wellness

Ryan and Rachael smile in front of a Matchbox 20 Concert Poster at Jiffy Lube Live on July 27, 2023

Last night, I attended a Matchbox 20 concert at Jiffy Lube Live, an event that had been on my calendar since before the pandemic. The anticipation was high, but so was my pain. A sudden flare of chronic pain, the severity of which I hadn’t experienced in months, hit me just hours before the show. The unpredictability of disability and chronic pain is a constant reminder that it's always with us, even during our most anticipated moments.

As Brijana Prooker beautifully articulated in her POPSUGAR essay, living with an invisible illness often involves a performance of wellness. We mask our pain with smiles, energetic demeanors, and a relentless positivity that hides our suffering. We do this to make others comfortable, to fit into societal expectations of health and normalcy. But at what cost?

For years, I too performed wellness. I hid my pain behind an energetic bubbly persona, concealing my struggle from the world. But as Brijana points out, this performance can lead to further harm. "While I may have succeeded in looking healthy, it had only made me sicker," she writes. The energy we expend to appear "well" can exacerbate our conditions, leading to more pain, more fatigue, and a deeper sense of isolation.

The pressure to appear healthy extends to our social interactions. We extend visits beyond our limits, pushing through the pain to avoid disappointing others. We hide our needs, our pain, and our limitations, often at great personal cost. As Brijana explains, a casual hangout can cost us "days, possibly weeks in bed — and so many spoons, we'd have to wait until next month for them to replenish."

But it's time to break free from this cycle. It's time to prioritize our health over societal expectations and other people's comfort. It's time to make our invisible disabilities visible, to share our experiences openly and honestly. It's time to stop performing wellness and start living our truth.

As we near the end of Disability Pride Month, let's remember that our worth isn't determined by our appearance or wellness. Our worth lies in our resilience, our strength, and our ability to navigate a world that often overlooks us. Our worth lies in our authenticity, in our courage to share our stories, and in our determination to advocate for a more inclusive and understanding world.

I Spent Years Trying to Hide My Chronic Illness For Others' Comfort. No More.