Beyond the 1%: Amplifying Disabled Voices in Hollywood and Halls of Power

From left: Zayre Ferrer, Monica Cecilia Lucas and Gisselle Legere.

In the vibrant tapestry of our society, the disabled community weaves a narrative often left unexplored, yet profoundly impactful. As we celebrate National Disability Employment Awareness Month, let’s delve into the realms of representation, adaptability, and the stark disparities in political representation for disabled individuals.

“Roughly 20% of Americans live with a disability, yet less than 1% of Hollywood writers are disabled,” a stark revelation from the Inevitable Foundation. The recent Writers Guild of America West deal, promises to address specific issues impacting disabled writers in Hollywood most. Gisselle Legere, a Cuban American writer, heralded the WGA’s victory in setting a minimum number of writers who must be staffed on shows as the “biggest win,” illuminating a path toward more inclusive representation in the writers' rooms.

In the political arena, the narrative unfolds similarly, yet with its unique challenges. ChrisTiana ObeySumner MPA, MNPL, a multi-disabled Seattle City Council candidate, embodies the resilience and determination that disabled candidates bring to the political table. Yet, systemic barriers and ableist backlash often stymie their journey. A mere one in 10 elected officials have disabilities, according to a 2018 study from Rutgers University, underscoring a glaring disparity in representation that demands our attention and action.

Sarah Blahovec, co-founder of Disability Victory, astutely observes, “Disabled people are adaptable. We’re creative. We’re problem-solvers. And we’re resilient because every day we navigate a society that is not built for our needs.” These are not just qualities; they are a testament to the untapped potential that disabled individuals bring to leadership roles in every sphere of our society.

As we navigate through NDEAM, let’s champion for more than just hiring or electing disabled individuals. Let’s advocate for providing an upward path toward mobility in their jobs, giving them a chance to flourish, and arming them with the tools they need to be successful. Let’s ensure that the diverse pool of disability is represented in all decision-making rooms, from the board room, to the writers room, to elections. We need to be in the room where it happens.

In the spirit of fostering a society where every thread is valued, let’s weave a narrative where disability is not seen through a lens of limitation, but a spectrum of possibilities and diverse perspectives. Let’s be the catalysts for a future where equity is not just a metric but a lived reality.

What the WGA deal with Hollywood studios means to writers with disabilities

Challenging Misconceptions: The Power of Reasonable Accommodations in the Workplace

With her guide dog Paul at her side, Maya Larson signs with her boss Darlene Zangara, executive director of the Minnesota Commission of the Deaf, Deafblind and Hard of Hearing in St. Paul, Minn. (Glen Stubbe/Star Tribune/TNS)

Today I'm reflecting heavily on the importance of reasonable accommodations in the workplace. These are not preferences or luxuries, but necessities that level the playing field for disabled employees like myself. They are equalizers, not special treatments, and they are as diverse as the individuals who require them.

The process of disclosing a disability and requesting accommodations is fraught with challenges. It's not a step taken lightly. By the time an employee discloses a disability, they've likely exhausted all other options to adapt their work environment independently. As a wheelchair user living with Cerebral Palsy, a service dog handler to Canine Companions® Pico, and someone living with a visual impairment and chronic pain, I can attest to the discomfort and apprehension that comes with this disclosure.

The latest report from the Disability:IN and the Disability Equality Index for 2023 found that only 4-6% of employees openly disclose disability in the workplace, despite 97% of employers encouraging them to do so. This discrepancy could be due to misconceptions about disability and job performance, perceived barriers to upward mobility, or a general misunderstanding about disability overall by the employer.

As highlighted in a recent article on Disability Scoop, Occupational Therapist Elizabeth Duffy put it beautifully. "Duffy said employers can adjust to accommodate different ways of learning and absorbing information. That could include scheduling flexibility and making sure meetings aren’t the only way to deliver updates and announcements to staffers." This is a prime example of how simple accommodations can make a significant difference in an employee's ability to perform their job effectively.

However, the process of requesting and receiving accommodations can often feel adversarial, leaving employees feeling beaten down and less likely to seek further accommodations in the future. This is counterproductive, as it ultimately hampers job performance.

The future of work for disabled employees is promising, with industries expected to grow over the next decade, as highlighted in a recent Forbes article by Diane Winiarski. But this growth must be accompanied by a commitment to diversity, equity, inclusion, and access. Employers must reassess their reasonable accommodation processes and strive for a more inclusive and equitable workplace.

Reasonable accommodations are not an attempt to "gamify" the system. They are a necessity for disabled employees to perform their jobs to the best of their ability. Let's continue to challenge misconceptions, promote understanding, and advocate for a more inclusive workplace.

With More Neurodivergent Workers, Employers Add Support

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.

The ADA and Beyond: The Ongoing Fight for Workplace Inclusion

A wheelchair user seen from behind moves through her workplace.

Today, it's time to reflect on the challenges and triumphs of disabled individuals in the workplace. As a disability advocate, I've seen firsthand the barriers that disabled individuals face in their professional lives. But I've also witnessed the resilience, creativity, and determination that they bring to the table.

The Americans with Disabilities Act (ADA) was a significant milestone, but 33 years later, we're still grappling with the complexities of 'reasonable accommodations' and the stigma associated with disclosing a disability. As my friend Emily Ladau recently told CNBC, "Even though workplaces can focus on creating a culture of inclusion, there's that internal barrier that people still struggle with, because the world is telling them that disability is shameful, that disability is wrong, that their existence is somehow a mistake."

This narrative is not only harmful but also fundamentally untrue. Disability is not a mistake or a weakness; it's a part of our identity that shapes our experiences and perspectives. It's time to shift this narrative and embrace disability as a strength.

Research shows that when employees with disabilities are given the opportunity to educate and connect with their co-workers, the number of people who disclose a disability and request accommodations increases. This is a testament to the power of open dialogue and the importance of creating safe spaces for disclosure.

Companies like PSEG have taken steps in the right direction by launching initiatives to encourage people with disabilities to bring their full selves to work. After their awareness campaign, the percentage of people who identified as disabled in their workplace tripled. This is a clear indication that when we create an environment of understanding and empathy, people feel more comfortable disclosing their disabilities.

As we move forward, let's remember Ladau's words: "When we shift that narrative and we begin to say, 'You can identify as having a disability. That is something that you can be proud of. That makes you who you are,' the number of people who identify in the workplace as disabled is going to grow."

Let's continue to challenge the status quo, advocate for reasonable accommodations, and celebrate the diverse experiences and perspectives that disabled individuals bring to the workplace.