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

One Step Away: Reflecting on Trump's Narrow Escape and Disability

Law enforcement officers gather at the campaign rally site for Republican presidential candidate former President Trump.

Evan Vucci/AP

This weekend's events at Donald Trump's rally in Pennsylvania have left us all grappling with numerous questions. How could such a security failure occur? What were the motivations behind the shooting? How will this historic moment reshape US politics in the 2024 election? Amidst the whirlwind of these discussions, one question has been persistently echoing in my mind: What does this assassination attempt say about our current views on disability in this country?

As someone who lives with multiple disabilities, this question is not just rhetorical. Former President Donald Trump has openly and notoriously mocked disabled individuals and wounded veterans. The irony is that by sheer luck, he narrowly avoided becoming part of the community he has so often disparaged. This incident starkly reminds us that we are all just one moment away from joining the ranks of the disabled community.

During the chaos following the shooting, Democratic strategist Johnny Palmadessa told Reuters he witnessed elderly and disabled attendees struggling to evacuate the venue. He described scenes of mothers shielding their children from bullets, husbands protecting their wives, and elderly people giving up on trying to escape because they couldn't move quickly enough. Palmadessa observed, "I watched elderly people struggle to leave fast enough. Some of them practically gave up and decided, I'm just going to wait here because I can't get out right now. That's not okay."

This heartbreaking reality is all too familiar to many of us in the disability community. During emergencies, our needs are often overlooked, leaving us vulnerable and, at times, resigned to our fate. The U.S. Secret Service, while prioritizing the protection of the president, has a responsibility to ensure the safety of all attendees, including those with disabilities. Their failure to do so at this event is a glaring oversight that demands immediate rectification.

The broader implications of this incident extend beyond just the physical safety of disabled individuals at public events. It forces us to confront how deeply ingrained ableism is in our society. Trump's history of mocking disabled individuals is not just offensive; it's indicative of a societal mindset that devalues and disregards the disabled community. As a result, the protections and considerations that should be in place are often absent.

We must advocate for inclusive emergency preparedness plans that account for the needs of disabled individuals. This includes ensuring accessible egress routes, providing adequate assistance during emergencies, and training all personnel on how to effectively support disabled attendees. The Trump assassination attempt is a stark reminder that our current systems are insufficient and that immediate action is necessary to prevent future tragedies.

Why 'Dateable' is the Book Every Disabled Person Needs

Book cover of "Dateable: Swiping Right, Hooking Up, and Settling Down While Chronically Ill and Disabled" by Jessica Slice and Caroline Cupp. The background features a gradient of pastel colors including yellow, blue, and green. The title is in bold yellow text, with the subtitle and authors' names in smaller white and green text respectively.

Today, I am reflecting on the incredible opportunity to be featured in the transformative book, "Dateable" by Jessica Slice and Caroline Cupp. This book is a definitive primer on dating with a disability, and I couldn't be more grateful for the chance to contribute to this important text.

Representation in media and literature is crucial for people with disabilities. "Dateable" fills a significant gap by addressing the unique challenges and triumphs we face in the dating world. The book tackles the lack of representation and role models that can prevent us from seeing ourselves as desirable, romantic, and dateable. As the authors poignantly state, "There are huge numbers of disabled people dating, hooking up, and marrying. But if we don’t see that playing out on-screen, especially if we operate in actual communities made up of predominantly nondisabled people, it can feel like we’re the only ones on earth trying to figure this out."

One of the key themes in "Dateable" is the struggle against internalized ableism and the complicated questions around disclosing one's disability in the context of dating. The book explores the trauma of dating apps, the biases they perpetuate, and the often painful interactions that come with them. The chapter "S*?! (AHEM, STUFF) PEOPLE SAY" features my own story, an anecdote encapsulating the absurdity and the humor that often accompany dating with a disability. The book uses humor to address serious topics, making them more accessible and relatable. I often speak about my medical history and experiences, but having one of my favorite stories immortalized in print, with its perfect mix of humor and reality, is truly special.

"Dateable" provides a platform to advocate for disability rights and awareness. The book doesn't shy away from difficult topics like the fetishization of disability, the need for open communication and consent, and the challenges of navigating sex and relationships with various disabilities. It shines a light on the broader societal changes needed to foster a more inclusive understanding of dating with a disability.

"Dateable" is the book I wish I had when I was younger, coming to terms with my body, its limitations, and what it would mean for my life in the dating space. It’s a book that every disabled person should read, regardless of where they are in their dating journey. It reminds us that our disability makes us just as human, dateable, and desirable as anyone else. Our dating lives may be more complicated, but we deserve to be represented, talked about, and yes, sexualized. We date, we love, we break up, we struggle just like everybody else, and this book puts all of that front and center unapologetically.

Thank you, Jessica and Caroline, for putting this book into the world. It was so needed and could not have come at a more perfect time.

The Hidden Biases of AI: What Disabled Job Seekers Need to Know

An individual stands in front of a large, illuminated 'AI' sign, surrounded by futuristic digital graphics and data displays, symbolizing the integration of artificial intelligence in modern technology.

Today, I’m diving into something that's been on my mind a lot lately: the role of artificial intelligence in hiring. AI has completely changed how we hire, making things quicker and more efficient than ever before. But as we jump on the AI bandwagon, we also need to talk about its potential downsides, especially when it comes to disabled candidates.

AI tools, like ChatGPT, have made hiring a lot smoother. They can zip through resumes, spotlight the good stuff, and flag any issues, making HR's job a lot easier. According to Bloomberg’s Sarah Green Carmichael, “Nearly half of recent hires used AI to apply for jobs, according to a survey by Resume Builder.” This is pretty huge, right? But let’s not kid ourselves—AI has its flaws.

A recent article by Gus Alexiou in Forbes highlighted an experiment by University of Washington researchers that found AI tools could be biased against resumes that mention disability. They compared a standard CV with six different versions, each highlighting different disability-related achievements. The results were pretty shocking: ChatGPT only ranked the disability-modified CVs higher than the control one 25% of the time. This means many qualified disabled candidates might be overlooked.

Commenting on the UW project, lead author Kate Glazko said, “Ranking resumes with AI is starting to proliferate, yet there’s not much research behind whether it’s safe and effective…. For a disabled job seeker, there’s always this question when you submit a resume of whether you should include disability credentials. I think disabled people consider that even when humans are the reviewers.” These types of biases often prevent disclosure of disability in the workplace, in all aspects—from being a candidate to an employee. Both humans and AI still have inherent biases that must be accounted for, and that starts with awareness and diverse perspectives in looking at the data.

This is where human oversight comes in. AI can help with hiring, but it shouldn’t replace human judgment. It’s like using a calculator—you need to understand the math first to know if the calculator’s answer is right. We still need humans to ensure that the AI’s decisions make sense. And even then, nothing is foolproof.

Survey data showed that many job seekers still needed to tweak their AI-generated content to avoid sounding like a robot, with 46% saying they edited the output “some” and only 1% not editing it at all. So, while AI is a handy tool, we can’t trust it blindly—whether you’re an applicant or a hiring manager.

As we move forward, we need to balance the speed and efficiency of AI with the essential human touch. Using AI as a tool rather than a replacement will help us create hiring practices that truly value the contributions of disabled candidates.

ChatGPT Is Biased Against Resumes Mentioning Disability, Research Shows

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.

You Don’t Look Disabled: The Harmful Effects of Gatekeeping

“Keep Out” Sign in red lettering against a brick wall.

Living with cerebral palsy, I've encountered many forms of gatekeeping that undermine my lived experience. Despite decades of progress and the landmark Americans with Disabilities Act turning 34 this year, our community continues to face skepticism and discrimination, often because we don’t fit society's narrow view of what disability should look like.

Paul Castle, a blind artist and illustrator, encapsulates a critical point when he says, "Blindness is a spectrum." Castle and his guide dog, Mr. Maple, were recently denied entry to a Seattle restaurant because an employee didn't believe Mr. Maple was a real service animal. The employee's reasoning? "You don't look blind," he told Castle, per CBS News. This statement underscores a broader issue: the public's limited understanding of disabilities, which often leads to harmful gatekeeping.

Disability manifests in countless ways, both visible and invisible. As someone who uses a wheelchair and a service dog, along with chronic pain, I've seen firsthand how quickly people are to judge based on appearances. The reality is, disabilities are as diverse as the people who live with them. They can vary not just from person to person but even within the same individual over time.

The Daily Dot reports, Katie, a TikTok user with a service dog, shared a harrowing experience at a JCPenney store. During a medical episode, a fellow shopper harassed her, questioning why she needed a service dog and even suggesting she was "in the way." Katie’s service dog was assisting her, but the woman insisted, "You don't look like you need a service dog." This incident again highlights the everyday struggles we face, constantly defending our needs against ignorance and prejudice.

Such encounters are not isolated. They reflect a systemic issue where ableism and medical gatekeeping prevent us from accessing the rights and accommodations to which we are legally entitled. This attitude perpetuates discrimination and hinders true inclusion. We need to shift the narrative from suspicion and doubt to understanding and acceptance.

To combat this, we need stronger laws protecting the rights of people with disabilities and better public education about the spectrum of disabilities. Educating the public about the ADA and the legal rights of service dog handlers is essential. We must urge legislators to enforce existing laws more strictly and to consider new measures that protect us from discrimination and harassment.

As I reflect on these stories, I am reminded of the resilience of our community and the importance of continuing the fight for equity and inclusion. We must break down these barriers and educate others about the true nature of disabilities. Disclosing our disability is not for style points or sympathy. We share so that you'll understand, and most importantly, believe us.

Blind artist who was told "you don't look blind" has a mission to educate: "All disabilities are a spectrum"

Independence Day and Financial Freedom: How Biden’s PSLF Reforms are Changing Lives

Piggy bank with Debt Forgiveness graduation cap on cash

As we celebrate Independence Day, I reflect on the broader meanings of independence. For many of us, especially those with disabilities, true independence includes financial freedom, accessibility, and the ability to pursue dreams without crushing student debt. Today, I delve into President Biden's efforts to revamp the Public Service Loan Forgiveness program, the looming threat of potential rollbacks by former President Trump, and the misguided calls for Biden to drop out of the race just four months before the election.

In February, my student loans, amounting to six figures, were forgiven under the PSLF program. Initially spearheaded by George W. Bush in 2007, the program aimed to attract the next generation of federal workers. However, it faced significant challenges, particularly under the Trump administration, which denied 99% of applicants. Despite these setbacks, Biden's administration successfully righted these wrongs, fulfilling the promise of financial freedom for many public servants like myself.

President Biden's commitment is evident. He has worked tirelessly to eliminate the red tape and bureaucratic hurdles that plagued the PSLF program. As the Congressional Research Service reported, outstanding education debt in the U.S. exceeds $1.6 trillion, affecting nearly 43 million people. Biden's actions have provided much-needed relief, allowing public servants to focus on their careers and personal lives without the constant stress of overwhelming debt.

However, this progress is under threat. Former President Trump has made it clear that he plans to roll back these achievements if re-elected. He has repeatedly attacked Biden's loan relief policies, calling them "vile" and "not even legal" per CNBC. Trump's proposals include eliminating the U.S. Department of Education's loan relief programs, including the PSLF, and making deep cuts to financial aid programs for students. This would be devastating for those relying on these programs to achieve their educational and career goals.

In light of these threats, calls for Biden to drop out of the race seem not only misguided but dangerous. Just four months ahead of the election, we need a leader who has demonstrated integrity and a commitment to the American people. Biden understands the importance of keeping promises and fighting for the rights and freedoms of all Americans, especially those with disabilities.

The public service loan forgiveness program has been a godsend for my financial freedom. It enabled me to pursue an education at institutions that might have otherwise been out of reach financially while ensuring my success.

As we celebrate this Fourth of July, let's remember the broader meaning of independence. It's about having the freedom to pursue our dreams, live without financial burdens, and access opportunities that allow us to thrive.

Trump may roll back student loan forgiveness programs if elected to second term

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 Dual Reality of Disability Pride Month: Progress in Technology, Challenges in Law

Composite image highlighting homelessness and disability rights. Includes a Supreme Court document titled 'CITY OF GRANTS PASS, OREGON v. JOHNSON et al.,' protest signs reading 'HOUSING NOT HANDCUFFS' in front of the U.S. Supreme Court, and a person sleeping on a bench, framed by a pink shape.

For over three decades, the Americans with Disabilities Act has been the cornerstone of ensuring rights and access for millions of Americans with disabilities. However, a quick glimpse at recent headlines reveals just how much work remains to be done to create true equality and access.

One area where we’ve seen significant progress is in the realm of technology and accessibility. Platforms like Yelp have introduced new features to make the world more accessible. Recently, Yelp announced the launch of AI-powered alt text and new ways to search for accessible businesses. These features, introduced in collaboration with American Association of People with Disabilities, Disability:IN, and The Arc of the United States allow users to search for businesses with braille menus, ADA-compliant buildings, and closed captioning on bar TVs. As Yelp’s Senior Vice President of Product, Akhil Kuduvalli Ramesh, stated, “With these new accessibility attributes, we’re excited to help businesses more clearly indicate their inclusive practices to make it even easier for people to find the right business for them.”​

Despite these advancements, recent legal developments underscore the ongoing challenges we face. The Supreme Court's decision in City of Grants Pass v. Johnson, which permits criminal penalties for people experiencing homelessness, disproportionately impacts those with disabilities. As disability rights lawyer Evan Monod writes for Slate Magazine, “At the trial court level, multiple people submitted declarations that they were not able to stay at the only shelter in Grants Pass because of their disqualifying disabilities." Justice Sotomayor’s dissent emphasized the critical issue: “Grants Pass’s Ordinances criminalize being homeless. The status of being homeless (lacking available shelter) is defined by the very behavior singled out for punishment (sleeping outside)”​

This decision echoes a dark chapter in U.S. history, where laws effectively criminalized disability. Monod highlights how “ugly laws” once prohibited disabled people from existing in public spaces, a practice that was deemed unconstitutional but seems to be resurfacing in different forms today​.

Disability Pride Month is not just a time to celebrate but also to recognize the work that remains. While we embrace technological advancements that make our world more accessible, we must also confront the systemic barriers that continue to exist.

These incidents are not isolated. They highlight the gap between the promise of the ADA and its real-world enforcement. As we celebrate Disability Pride Month, let's remember that advocacy is an ongoing journey. We need to hold institutions accountable and push for policies that ensure equal access and inclusion for all.’

The Supreme Court Just Opened the Door to the Criminalization of Disability