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”

Why Removing Equity from DEI Is a Step Back for Disability Inclusion

Two hands, one from the top left and the other from the bottom right, grasp a large, yellow letter 'E' against a grey background, symbolizing the tug-of-war over the concept of equity in DEI (Diversity, Equity, and Inclusion) initiatives. Credit: Annelise Capossela/Axios

Recently, I've been reflecting on the troubling trend of companies removing 'equity' from their DEI initiatives, a move now endorsed by the SHRM. This shift is particularly harmful to the disability community.

Equity ensures that everyone has what they need to succeed. For disabled employees, this might mean accessible workplaces, assistive technology, or flexible work arrangements. SHRM's decision to drop 'equity' from its strategy undermines these critical supports. The Wall Street Journal's Ray Smith reports the organization is "moving away from equity language to ensure no group of workers appears to get preferential treatment." However, this perspective ignores the unique barriers faced by the disability community and other marginalized groups.

Removing equity from DEI efforts sends a concerning message: that the specific needs of marginalized groups are less important. This is not just a theoretical issue; it's a tangible setback. A recent piece by Bloomberg's Khorri A. Atkinson explored the impact on colleges and universities that have already begun eliminating hundreds of DEI-related jobs, impacting support for historically marginalized students. In the workplace, this trend could mean fewer accommodations and less understanding of the unique challenges faced by disabled employees.

Moving through the world with various disabilities, I’ve experienced firsthand the difference that equitable policies make. Equity isn't about giving some people an unfair advantage; it's about leveling the playing field. Without it, disabled employees like myself are left at a significant disadvantage.

We need to recognize that inclusion without equity is incomplete. Equity should be uncontroversial. It just means equality of opportunity. “Who are the people that find 'equity' confusing?" Deb Muller, the CEO of HR Acuity, told Axios’s Emily Peck. This is why the removal of 'equity' is so alarming—it risks undoing years of progress and harms those who rely on these measures the most.

I urge my fellow advocates and allies to speak out against this shift. It's crucial that we maintain a holistic approach to DEI that includes equity. We need to push for policies that recognize and address the diverse needs of all employees.

What are your thoughts on SHRM's decision to drop 'equity' from their DEI strategy? How do you think this will impact the disability community and other marginalized groups?

When DEI gets downgraded to I&D

No Way to Run a Country? The Harmful Narratives of Ableism in Media

Cover of The Economist magazine dated July 6th-12th, 2024, featuring an image of a walker with the Presidential Seal of the United States and the headline 'No Way to Run a Country’.

As a disability advocate, I am often reminded of the pervasive ableism that infiltrates many aspects of our society. The recent cover of The Economist, depicting a walker with the presidential seal and the caption "No way to run a country," is a stark example of this issue. Regardless of political views or the current debates around President Biden's fitness, framing his capability to govern based on a disability is not only cruel but highlights a deep-seated ableism that must be addressed.

This kind of representation perpetuates harmful stereotypes, suggesting that those who use mobility aids are less capable. Such images can have far-reaching consequences, reinforcing negative perceptions and fostering environments where people with disabilities feel pressured to hide their conditions. The Economist should be ashamed of themselves for this front-page cover and for continuing to push a harmful narrative that deems individuals with disabilities as less competent.

The Economist's cover is not just an isolated incident; it reflects a broader issue within media representation. This portrayal underscores the editorial team's lack of understanding and empathy toward disability. It's a reminder of the significant work needed to educate and shift societal perspectives. Media outlets have a powerful influence on public opinion, and with that power comes the responsibility to portray all individuals fairly and accurately.

This is not the first time we've seen such blatant ableism in politics. Senator John Fetterman faced criticism for using assistive technology to perform his duties, with many questioning his ability to serve. While the office of the President is indeed a different challenge, ableism should have no place in our political discussions. As advocates, we must highlight these issues and push for a more inclusive narrative recognizing the capabilities of all individuals.

Ableist portrayals like The Economist's cover can discourage employees from disclosing their disabilities, fearing judgment and discrimination. This reluctance prevents many from accessing necessary accommodations that could enhance their productivity and well-being. It's crucial that we create workplaces where disability disclosure is met with support and understanding, not prejudice.

To combat these harmful narratives, media organizations must take actionable steps to improve their representation of individuals with disabilities. This includes hiring more people with disabilities in visible roles, consulting with disability advocates when creating content, and committing to ongoing education on disability issues. By doing so, they can help dismantle ableist stereotypes and promote a more inclusive society.

Let's use this moment to spark a conversation about ableism in the media and beyond.

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

AI: The Game-Changer for Accessibility and Inclusion in the Workplace

A generative artificial intelligence cpu that emits colorful light, 3d rendering

Today, I want to explore the vital role of AI in disability advocacy, particularly in the realm of employment and remote work.

Dr. Victor Santiago Pineda, in his recent Forbes interview, emphasized, "The assistive technology of today is the mainstream technology of tomorrow." This profound statement encapsulates the potential of AI to revolutionize our approach to disability inclusion. AI-driven tools are not merely assistive technologies; they are catalysts for societal change, reshaping the landscape of employment and accessibility.

One significant area where AI has made a substantial impact is in facilitating remote work. Dr. Gleb Tsipursky noted in a recent article for The Hill that many government workers are unaware that they can use the ADA to work from home. This is a critical oversight, especially considering the benefits that remote work offers to individuals with disabilities. Personally, I have leveraged remote work to not only enhance my productivity but also to manage my chronic pain and mental health more effectively. The flexibility of remote work has been a game-changer, allowing me to maintain full-time employment while addressing my health needs.

While I have always been fortunate enough in my career to have some degree of remote work, the pandemic normalized what the disability community has always known—remote work enables greater participation. It's not about where the work gets done, but how, and with what collaborative tools.

AI-powered assistive technologies play a crucial role in making remote work feasible and efficient for people with disabilities. Tools like screen readers, voice recognition software, and AI-driven communication platforms have democratized access to work opportunities. These technologies enable individuals with disabilities to perform their jobs effectively, breaking down barriers that once seemed insurmountable.

However, the integration of AI in disability advocacy is not without its challenges. Ethical considerations must be addressed to ensure that AI applications are developed and implemented with the best interests of individuals with disabilities in mind. We must advocate for policies that promote the ethical use of AI, ensuring that these technologies are designed to enhance, not hinder, accessibility and inclusion.

As we navigate the complexities of AI in the workplace, it is essential to recognize its potential to transform the employment landscape for people with disabilities. By embracing AI-driven solutions, we can create a more inclusive and equitable work environment. This not only benefits individuals with disabilities but also enriches our workplaces with diverse perspectives and talents.

Dr. Victor Pineda Talks Championing Disability Inclusion, Accessibility As Innovation In Interview

Championing Diversity: Unpacking the Lululemon Inclusivity Debate

A woman walks past a Lululemon Athletica store on December 10, 2013 in Miami, Florida.

As we usher in 2024 with optimism, it's a sobering reminder for me, as a disability advocate, that the journey toward true equality and inclusivity is still a work in progress. The recent remarks by Chip Wilson, the founder of lululemon, starkly exemplify this. He told Forbes, “And I think the definition of a brand is that you’re not everything to everybody… You’ve got to be clear that you don’t want certain customers coming in.” This perspective, shockingly blunt yet not unfamiliar, resonates deeply with many who have felt marginalized by corporate ideologies.

Sonia Thompson, in her Forbes article, navigates the complexities of inclusive marketing, a concept Wilson seems to have misinterpreted. She asserts that being an inclusive brand doesn’t equate to including everyone but instead involves being intentional about which identities you serve. She rightfully criticizes Wilson's approach of excluding customers based on identity, a tactic that is neither common nor widely accepted in marketing.

Wilson’s words cast a long shadow, particularly for those of us who have tirelessly fought for recognition and inclusion. His blatant admission that certain customers are unwelcome reflects not merely a business strategy but a deeper societal issue of discrimination and exclusion.

Reflecting on Chris Rock's sharp commentary from his 2023 Netflix Special 'Selective Outrage', which I had the privilege to attend in Baltimore, the issue gains an even sharper edge. Rock humorously yet incisively remarks, “They sell $100 yoga pants. They hate somebody... They sell $100 non-racist yoga pants.” His humor underscores the absurdity of exclusion based on economic status, a sentiment that resonates profoundly with the disabled community.

The stark contrast between Rock's humorous perspective and Wilson's grave stance underscores a broader societal trend of companies profiting while selectively choosing their customer base. This practice is not only ethically questionable but also counterproductive to fostering a culture of inclusivity and respect.

Thompson highlights Lululemon's growth since expanding their sizes, directly contradicting Wilson's assertion that inclusivity is detrimental to a brand. The backlash against Wilson's comments signals the public's increasing intolerance for discrimination in any form. Effective marketing illustrates how a product supports the customer in addressing their needs, not in excluding them for not fitting a certain image.

As we forge ahead in 2024, let's confront these outdated narratives and champion true inclusivity in all facets of business and society. It's time to transition from mere words to actions that demonstrate a genuine commitment to diversity and inclusion for everyone.

What Lululemon Founder’s Comments Got Right And Wrong About Marketing

Empowerment on Four Legs: Celebrating National Service Dog Month

Ryan, next to service dog Pico, poses with D.C. Councilwoman Brooke Pinto, Canine Companions puppy raiser, Jaime Werner and her service dog in training, Boston following the recognition of National Service Dog Month by the D.C. City Council

Yesterday, I was honored to witness the formal recognition of National Service Dog Month by the Council of the District of Columbia, a testament to the incredible work of organizations like Canine Companions®.

Since its inception in 1975, they have placed 7,454 graduate teams. Just this year, 413 working dog teams have been placed, and there are currently 2,706 active graduate teams nationwide. Behind these numbers are countless stories of individuals finding newfound independence and confidence, thanks to their service dogs.

But these achievements aren't just the result of the organization's efforts alone. A vast network of 4,700 active volunteers nationwide, including 1,292 volunteer puppy raisers and 138 volunteer breeder caretakers, contribute to this mission. Yesterday, I had the pleasure of meeting Jaime Werner, a volunteer puppy raiser whose dedication ensures that service dogs like Pico are well-trained and ready to assist individuals like me. She is currently raising her sixth dog, Boston.

Councilwoman Brooke Pinto's introduction of this legislation is a significant step forward in recognizing the importance of service dogs in our community. Navigating the world with myriad disabilities can be tricky, and Pico has been instrumental in my daily life.

As we celebrate National Service Dog Month, let's remember that independence shouldn't be limited. Every individual, regardless of their challenges, deserves the chance to lead a life with greater autonomy. And with the support of service dogs and the organizations that train them, this vision is becoming a reality for many.

Thank you, Canine Companions, for your unwavering dedication. And to Pico, my loyal companion, thank you for being my eyes, ears, and a never-ending source of joy and humor.