Invisible Disabilities

Creative, Inclusive Workspaces: What We Can All Learn from the Adaptive Umbrella Workshop

Ryan presents via Zoom at a workshop on creating inclusive workspaces.

As we kick off National Disability Employment Awareness Month, yesterday I had the incredible honor of delivering the closing keynote address at the Adaptive Umbrella Workshop, hosted by the Bloomfield Township Public Library. This workshop focused on fostering creative, inclusive workspaces, and it was a privilege to share my thoughts on how we can create environments where everyone feels like they belong.

I've seen firsthand how conversations around diversity, equity, inclusion, and access are often treated like checkboxes—something to do out of obligation rather than a genuine effort to celebrate difference. During the workshop, we talked about how true inclusion goes beyond merely checking off boxes; it’s about cultivating a culture where disability isn’t a dirty word or something to dance around.

We discussed how equity, not just equality, must be the goal. Equity recognizes that everyone needs different tools to succeed. The idea that reasonable accommodations—whether it’s telework, flexible schedules, or assistive technology—are “special” or “unfair” is still prevalent in many workplaces. But these accommodations are about creating a level playing field.

In the federal government, where I've worked for over a decade, telework has been a game-changer, especially during the pandemic. But it isn’t just about the pandemic—it’s about offering flexibility for employees who navigate complex physical and invisible disabilities like chronic pain. Accommodations like these are about empowerment, not favoritism.

Another important topic we tackled was the disclosure of invisible disabilities. A 2023 study by the SHRM revealed that 47% of employees with invisible disabilities haven’t disclosed them to their employers. This comes from a place of fear—fear that disclosure will harm career prospects or lead to workplace stigma. Employers must create safe spaces where employees feel empowered to disclose if they choose to, without fearing repercussions.

Finally, we talked about resentment. Sadly, workplace accommodations are often misunderstood, leading to friction among coworkers who don’t see or understand the need. But as I shared during my keynote: It’s not the manager’s job to justify accommodations to other employees. Accommodations are about equity.

This workshop reminded me that building inclusive workspaces is an ongoing process. It’s about continuous education, open conversations, and creative solutions. The more we talk about what inclusion really looks like, the better we get at building work environments that uplift everyone, not just a select few.

A huge thank you to Jennifer Taggart and the Bloomfield Township Public Library for hosting such an important event, and to everyone who attended and asked thought-provoking questions. Your engagement fuels the work we’re doing to create a more equitable future.

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.

Honoring Robin Williams: Shedding Light on Invisible Disabilities During Disability Pride Month

A photorealistic image of Robin Williams, dressed in a white robe with golden details, holding a microphone. He is laughing joyfully, with a radiant smile on his face. The background features a dramatic sky with golden clouds and a bright sun shining behind him, creating a heavenly glow around his figure.

Reflecting on Robin Williams’ birthday this past week has brought back a flood of memories and emotions. As a kid who spent countless hours in hospitals recovering from various surgeries, I found immense joy and solace in watching Robin’s comedic genius. His off-the-wall humor in movies like Aladdin, Hook, and Mrs. Doubtfire provided a much-needed escape and a dose of laughter that was as healing (and necessary) as any medicine.

As an adult, my admiration for Robin Williams only grew. I reveled in his masterful performances in a series of now-iconic HBO specials. One of my most cherished memories is attending his final special, Weapons of Self Destruction, at DAR Constitution Hall in 2009. Watching his comic mind at work was nothing short of magical. Robin Williams was more than just a comedian to me; he was, and remains, an inspiration during some of my darkest times.

Robin’s untimely death by suicide in 2014 was a stark reminder of the silent battles many face daily. His struggle with mental health was a poignant example of an invisible disability. According to the National Institute of Mental Health (NIMH), nearly one in five U.S. adults lives with a mental illness, highlighting the prevalence of these unseen struggles. Yet, societal stigma often makes it harder for them to seek help and support.

We, as a society, have a responsibility to create environments that support those with mental health conditions. The American Foundation for Suicide Prevention reports that nearly 50,000 deaths occurred by suicide in 2022, making it the 11th leading cause of death in the United States.

Personal stories, like that of Robin Williams, have the power to drive change. By sharing our narratives, we humanize the statistics and inspire empathy and understanding. Let’s use these stories to spark conversations and promote a more inclusive society.

The workplace is a critical arena for mental health inclusion. A 2023 report from the American Psychological Association reveals that nearly 60% of employees experience negative impacts on their mental health due to work-related stress. Employers must adopt strategies to accommodate and support employees with mental health conditions. Flexible work schedules, mental health days, and accessible resources are steps toward a more supportive workplace.

Robin Williams’ legacy is a poignant reminder of the importance of addressing invisible disabilities. As we honor his memory, and celebrate Disability Pride Month, let’s commit to discussing mental health openly and honestly without shame. Share your stories, challenge the stigma, and advocate for inclusive policies. You never know whose life you'll change by sharing your story.

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 Pandemic's Impact on Workplace Inclusion: Lessons from the RVO Health Panel

A Zoom screenshot showing Disability Advocate Ryan Honick, and fellow RVO Health panelists, Alina Sharon, Ryan McKenna, Robin Hough, and Jessica Simon as part of a DEI in the workplace discussion.

Yesterday, as part of National Disability Employment Awareness Month, I had the distinct honor of joining a panel with the dynamic team from RVO Health. The topic? A subject close to my heart: diversity, equity, inclusion, and access in the workplace, especially in the light of the pandemic and its aftermath.

Firstly, I'd like to extend my heartfelt gratitude to Alina Sharon, Ryan McKenna, Robin Hough, and Jess (Leavitt) Simon. The depth of our conversation, the insights shared, and the commitment to fostering an inclusive environment was truly commendable. It's not every day that you get to be part of such an enlightening discussion, and I am continually encouraged by the positive steps that RVO Health is taking.

I've seen firsthand the challenges and opportunities that come with fostering an inclusive environment. The pandemic has only heightened the need for workplaces to be more adaptable, understanding, and inclusive. Jess (Leavitt) Simon captured this sentiment perfectly, stating, "We can't unring the bell of COVID. COVID completely disrupted and changed the way of work. The employers that are going to retain and attract the best talent are going to have to figure out how to do it differently." 

From my personal journey, I know the importance of conversations like these to deepen understanding and empathy and truly make a difference. True inclusivity begins as a cultural attitude and a commitment to continual dialogue about the needs and contributions of every employee. The pandemic brought to light the importance of mental health, flexibility, and the need for employers to be more understanding and accommodating.

RVO Health's commitment to these values is evident, and I am excited to see the strides they will make in the future. The panel discussion was a testament to the fact that when organizations and individuals come together with a shared vision, real change is possible.

To everyone who joined us for the panel, thank you for being part of this important conversation. Let's continue to push boundaries, challenge norms, and create workplaces where everyone feels valued and included.

Snapshots of Service: Pico's Dedication Amidst a Career of Change

Pico stands behind the American flag for his professional portrait at the US Department of Labor

As I sit at my desk, the hum of assistive technology filling the room, I'm reminded of the many challenges and triumphs I've faced as a disability advocate and federal employee. My early days at the U.S. Department of Health and Human Services (HHS) saw me promoting the newly minted Obamacare, a transformative period in our nation's healthcare landscape. Later, at the USPTO, I was fiercely protecting intellectual property, ensuring the sanctity of innovation and creativity. Today, I promote the impactful mission of the U.S. Department of Labor, protecting our nation's workforce.

Yet, amidst these professional milestones, there's been a constant, loyal presence by my side for the past decade - my service dog, Pico.

September marks National Service Dog Month, a time to honor the incredible animals that transform lives daily. Pico, a graduate of Canine Companions®, joined me after my tenure at HHS. As a wheelchair user with a visual impairment, navigating the world can be daunting. But with Pico, every challenge becomes surmountable. His unwavering support, especially in the workplace, has been nothing short of amazing.

Invisible disabilities, like my chronic pain, often go unnoticed. But Pico sees it all. He senses my discomfort, offering solace with a nuzzle or a comforting presence by my side. He's more than just a service dog; he's a confidant, a protector, and a never-ending source of comedy.

Recently, thanks to the talented Shawn Moore, Pico and I had a moment that encapsulated our journey. As the camera clicked, capturing Pico in his full professional glory, I felt a swell of pride. It was a moment of recognition, not just for Pico's service but for every service animal that has made a difference in someone's life.

To Pico, I say, "Thank you." Thank you for your unwavering service, for the moments of joy, and for the challenges we've overcome together. Here's to many more years of partnership, advocacy, and making a difference.

Join me in celebrating National Service Dog Month. Share your stories, honor these incredible animals, and let's continue the conversation on the importance of accessibility and inclusion in every workspace.

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.

Beyond Compliance: The Art of Fostering Accessibility in Your Organization

Business colleagues discussing architecture project in office.

Honored once again to be featured as a LinkedIn #TopVoice for Disability as we continue the fight for equality.

As we continue celebrating Disability Pride Month, let's address a critical issue: workplace accessibility. This isn't just about compliance; it's about fostering an environment where everyone, regardless of abilities or neurodiversity, can thrive.

A recent Forbes piece by Bérénice Magistretti notes that "80% of disabilities are invisible," including conditions like visual impairment, mental health issues, and chronic diseases. These often go unrecognized, leading to a lack of understanding and support.

Organizations can initiate change by acknowledging these invisible disabilities. The Hidden Disabilities Sunflower 💜 network provides a discreet method for individuals to indicate they have a non-visible disability, adopted by thousands of businesses worldwide.

However, recognition is just the first step. To genuinely prioritize accessibility, organizations must provide reasonable accommodations. These can range from assistive technology for those with visual impairments to flexible work arrangements for those with chronic conditions. The U.S. Department of Labor's Job Accommodation Network reported in May that nearly half of these accommodations can be implemented for free.

Disclosing a disability can be intimidating due to fear of discrimination. However, open communication can lead to better support and understanding, fostering a more inclusive workplace. When an employee chooses to disclose a disability, believe them. As a leader your first question should be "How can I support you in your role?" Normalize saying 'yes' instead of 'prove it.'

Psychology Today reports that "while 25 percent of employees self-identify as having a disability...most companies report that just 4 to 7 percent of their employees are people with disabilities." The latest Disability:IN 2023 DEI echoed these findings with a median 4.6 percent of companies reporting self identification of disabled employees. This discrepancy underscores the need for more open dialogue and understanding.

Furthermore, we must remember the importance of creating accessible physical spaces and promoting diversity and inclusion initiatives. Employers should ensure that their facilities accommodate individuals with physical disabilities. Encouraging the active participation of disabled employees in decision-making processes can foster a sense of belonging and representation.

Let's use Disability Pride Month as a catalyst for change, making our workplaces more inclusive and accessible for all. Prioritizing accessibility is an ongoing journey that requires commitment, adaptation, and continuous learning.

Why We Need To Bring More Visibility To Invisible Disabilities And Illnesses

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