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.

Celebrating Universal Design and Inclusion at GitLab

Ryan Honick Presents to the GitLab team on the 33rd anniversary of the ADA

Today marks the 33rd anniversary of the Americans with Disabilities Act (ADA), a landmark legislation that has transformed the lives of millions of Americans. Today, I had the distinct honor of speaking at GitLab on this significant day. Our discussion revolved around the benefits of universal design and remote work in fostering more inclusive and welcoming environments for employees of all abilities.

The conversation was vibrant, engaging, and insightful. I am profoundly grateful to the team at GitLab for inviting me to speak on such crucial topics during Disability Pride Month, and particularly on the anniversary of the ADA. It is through such dialogues that we continue the legacy and vital work of the ADA, ensuring equal opportunities for everyone to thrive in the workplace and beyond.

The passion of the GitLab team was palpable. They are committed to creating an environment where all employees can thrive and succeed. They understand that true inclusion happens when conversations about diversity and disability become the norm, not the exception. When we bring these discussions out of the shadows, we dismantle the stigma and shame often associated with disability. We create a space where people feel empowered to share their stories and experiences, enriching us all.

Normalizing these conversations is a step towards a more inclusive society. It allows us to recognize and appreciate the unique perspectives we each bring to the table, and understand how disability can impact us in ways we may not realize.

I am deeply thankful to GitLab for this opportunity. Their leadership's passion for these discussions is evident, and it's a reminder that change truly starts from the top. I hope that these conversations continue not just during Disability Pride Month, but throughout the year. They are daily discussions that need to happen. They are crucial to our success as individuals, as a society, and as a workforce.

I want to express my gratitude to GitLab for today's opportunity to discuss these important topics. Let's continue to bring these conversations to the forefront, not just today, but every day of the year.

Advocacy Burnout: The Untold Story of Disability Activists

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A black candle with a wild flame burns surrounded by smoke and a dark desolate background.

As we near the end of Disability Pride Month, I find myself reflecting on the journey we've embarked on together. Nearly every day, I've shared stories, raised awareness, and spotlighted the diverse aspects of disability life. The response has been overwhelming, and I'm deeply grateful for each one of you who has engaged with my posts, learned something new, or found solace in shared experiences.

But today, I want to shed light on a seldom-discussed aspect of disability advocacy: the exhaustion. The reality is, advocacy doesn't pause when the calendar flips or the spotlight dims. We advocate every day, not because we crave attention or conflict, but because we must. We strive to live in a world where our advocacy is no longer necessary, where disability discourse is so normalized that it doesn't require amplification.

There are days when the weight of this work feels unbearable. Days when I wish I could "just live my life," as some well-meaning yet misguided individuals have suggested. But here's the thing: I advocate so that I can do exactly that. So that we all can.

We yearn for a future where months like Disability Pride or National Disability Employment Awareness Month are no longer needed because people with disabilities are treated as equals. We yearn for a future where we don't have to justify our existence or fight for our rights. We yearn for a future where we can just live our lives.

Today, I'm not spotlighting a specific issue or cause. Instead, I'm offering a behind-the-scenes look at the toll advocacy takes. It's rewarding, yes, but it's also physically, mentally, and emotionally draining. And I promise you, your disabled friends are feeling it too.

We can't wait for the day when our advocacy puts itself out of business, as my entrepreneurial father Craig Honick once said. But until then, we need you. We need our allies to step up, to share the load, to amplify our voices. We are tired, but we are not defeated. And with your help, we can build a world where disability advocacy is a chapter in history books, not a daily fight.

Thank you for being part of this journey. Let's keep the conversation going, not just this month, but every day.

‘Artificial Intelligence Will Steal My Job!’ Fears Service Dog

In the mood for a chuckle today?

I am absolutely thrilled to share that I have been featured in the The Squeaky Wheel. Well, technically I need to thank Canine Companions® Pico for letting me have the byline. We've been matched for nearly a decade and with the rise of A.I., he had a lot to say.

‘Artificial Intelligence Will Steal My Job!’ Fears Service Dog

Free Expertise? The True Cost of Devaluing Disability Advocacy

A colorful backdrop with a silver broadcaster’s microphone at the center.

In my life as a disability advocate, I've had the honor of standing up for countless causes, initiatives, and events. It's been a journey filled with moments that have inspired me, connections that have broadened my worldview, and the rewarding sense that I'm making a real difference. But there's a troubling trend that's been casting a shadow over these experiences: the expectation that my expertise, and that of many others in my field, should be offered without any compensation.

A fairly common exchange with a potential client:

Them: We’d love to have you speak at our event. 

Me: Fantastic. Here are my rates.

Them: Oh, you charge? We have no budget. 

This isn't just about money. It's about respect, value, and recognition. When organizations come to us for our expertise but hesitate at the idea of paying for it, they're sending a clear message: they don't believe our knowledge, our time, and our energy are worth investing in. This devalues our work, our experiences, and our contributions to the very causes these organizations claim to champion. You can't truly advocate for diversity, equity, inclusion, and access without compensating the thought leaders whose opinions and expertise you value.

Remember, you're reaching out to us because we're established leaders in our field. We don't need exposure as a fringe benefit for free labor.

This issue isn't just about me or about disability advocacy. It's a widespread problem affecting countless experts and professionals who are asked to give their time and knowledge for free. But as we approach Disability Pride Month, it's time to shine a spotlight on this issue in our field.

We, as disability advocates, bring a unique perspective to the table. We offer insights that can't be found in textbooks or online articles. We share personal experiences, hard-earned wisdom, and a deep understanding of disability issues. This expertise is valuable and should be treated as such.

It's time for a change. It's time for organizations to recognize the value of disability advocacy and to invest in it. It's time for us to stand up and say, "Our expertise is worth paying for."

As we approach Disability Pride Month, let's start a conversation about this. Let's challenge the status quo and advocate for the recognition and compensation we deserve. Let's do this together.

I invite you to share your thoughts, experiences, and ideas in the comments below. Let's use our collective voices to make a difference. And if this message resonates with you, I encourage you to share it with your network. Together, we can change the narrative.

The Importance of Disability Representation in Fashion

Three models wearing adaptive SKIMS clothing

"Taylor Lindsay-Noel says her “jaw dropped” after seeing the clip, which has been making its rounds on social media this week. “Disabled people are here to stay, whether you want them to be here or not,” she said in a TikTok directed to [Candace] Owens. “And we deserve to be seen in all forms of media, including lingerie and shapewear.”
—Natalie Michie, FASHION Magazine

In the wake of recent comments from political commentator Candace Owens deriding SKIMS for their recent ad campaign promoting adaptive clothing, I became instantly frustrated and annoyed before quickly turning my mind to curiosity. Whenever someone attacks diversity, equity, and inclusion efforts, one of my primary questions becomes, why?

Owens openly and proudly detesting these efforts as “ridiculous” is an indicator of just how far we have to go. People are fearful either of what they don’t understand, or what threatens them. To view DEI efforts as tiresome, patronizing, and being taken too far, as Owens does, is a tacit admission of privilege. The very idea that disability is something to be prioritized, placed front and center with pride and joy, to be celebrated and appreciated, must make someone as narrow-minded as Candace Owens fearful.

Ableism is not new. The disabled community confronts it in our daily lives whether it’s an inaccessible environment, questioning our capabilities in the workplace, or general derisive comments. What has increased in recent years is the brazenness by those in positions of power who publicly mock our right to exist as we are and not be ashamed for it. Candace Owens is a symptom of systemic ableism, she is not the cause.

Additionally, we have brands like Levi Strauss & Co., who late last week announced a partnership with Lalaland.ai, a digital fashion studio to bring AI-generated models to their modeling campaigns in an effort to increase diversity. While Amy Gershkoff Bolles, Ph.D. Bolles, global head of digital and emerging technology strategy at Levi Strauss & Co.noted that AI would ‘likely’ never fully replace human models, the caveat alone is concerning. AI-generated imagery aimed at the disability population certainly has the potential to increase revenue, but doing so artificially while claiming to champion DEI as a “top priority” is disingenuous. I’m reminded of the 2022 campaign by Pottery Barn last summer that proudly introduced its Accessible Home furniture line without employing any disabled models.

Despite what Candace Owens, or the marketing team at Levi Strauss & Co. has to say, disabled people aren’t going anywhere. As 20% of the global population, we deserve to see ourselves everywhere, and compensated accordingly. If that creates discomfort for you, interrogate why.

I’m thankful to the many disability advocates who continue to call out the harmful impact of ableism.

Carson Briére apologizes for damaging wheelchair after 'disturbing video' surfaces

Mercyhurst Lakers center Carson Briére just went viral for all the wrong reasons. (AP Photo)

“It might seem like nothing more than immature, drunken behaviour, but what Briere and his friends did is a frightening example of complete disregard for the humanity of disabled people,” Emily Ladau told Yahoo Sports Canada. “As a wheelchair user, even when I'm not physically sitting in it, I consider my chair an extension of my body. Damaging my wheelchair means you're disrespecting me and taking away my freedom of movement. The issue here isn't just damaged property or bad choices; it's that ableism, privilege, and entitlement are on full display.”
-Ian Kennedy, Yahoo Sports

This story about Carson Briére, student athlete at Mercyhurst University and son of Philadelphia Flyers interim GM Daniel Briére, is beyond disturbing. Not only is the ableism and entitlement on full display, so is the complete disregard for autonomy. Wheelchairs are expensive medical equipment costing thousands of dollars and can take upward of a year to obtain depending on fitting, measurements, insurance denials, etc.

I've watched this video several times in disbelief. I was shaking with fear not only for the user whose wheelchair was so callously disrespected, but also with the stark reminder that this could have happened to me. This is a nightmare for every wheelchair user who has been forced to navigate inaccessible environments.

Emily is right. Our medical equipment be it a wheelchair, a cane, a scooter, or a service dog like Canine Companions® Pico are extensions of us and our body. Through that lens, this is beyond the destruction of property. This is assault. Briére's actions have caused a loss of bodily autonomy that may take months to regain along with the financial and emotional impact.

The laws have not caught up yet, however.

This experience highlights so many injustices; inaccessibility, ableism, privilege, entitlement and a lack of empathy and understanding around disability.

#disabilityawareness #disabilityrights #disability #medicalequipment #sports #hockey #flyers

Junk Fees Hit Disabled People Too

The disability community is heavily impacted by the Crip Tax, whether it’s in the form of so-called junk fees or simply a higher cost of living. The toll is physically, emotionally, mentally, and financially exhausting simply fighting for our right to exist.

"President Biden dedicated quite a bit of airtime in his State of the Union address to the Junk Fees Prevention Act, a push to limit hidden fees and surcharges in a number of industries. The proposed legislation would curtail companies from overcharging on things like extra resort fees at hotels, service fees at concerts and sporting events, and added costs charged by airlines so that family members can sit together."
Deepa Shivaram, Emily Olson–NPR

President Biden talked extensively about the Junk Fee Prevention Act in his State of the Union Address. While the White House cited research from the Consumer Financial Protection Bureau highlighting the racial disparities of added fees, the disability community is also adversely affected. We routinely pay the colloquial “Crip Tax” simply to level the playing field.

Consider the most recent data released by the U.S. Department of Transportation that found airlines mishandled 941 wheelchairs or scooters in November of 2022; or roughly 1.5% of mobility equipment. While that number may seem small to non-disabled people, if those were your legs, you’d be more cautious.

Uber settled a multi-million dollar lawsuit brought by the U.S. Department of Justice last year over the illegal practice of wait time fees— disproportionately affecting disabled passengers.

Our hotel rooms often come with increased costs, too. The ADA prohibits charging more for accessible rooms, yet hotels and travel sites try to get away with it anyway hoping uninformed travelers will simply not know the law or be too exhausted to contest the rate hike. I recently lost hours on the phone with American Express resolving excess fees associated with booking an accessible room through their travel portal at Virgin Hotels.

The Biden administration talked about excessive ticketing fees for concerts. Here again, the disability community faces added expenses. We often pay more for our seats because venues do little to verify that the limited quantity of accessible seating goes to disabled patrons rather than scalpers charging a premium. I’m working with local venues in Washington D.C. including Capital One Arena to help address this challenge.

These are just the simple things. Pricer items like healthcare, transportation, and medical equipment are essential, which is why I was glad to see the administration tout a proposed rule change simplifying reporting requirements for the more than 7 million disabled people who receive monthly Supplemental Social Security Administration benefits.

The disability community is heavily impacted by the Crip Tax, whether it’s in the form of so-called junk fees or simply a higher cost of living. The toll is physically, emotionally, mentally, and financially exhausting simply fighting for our right to exist.

Is Long COVID Considered to Be a Disability in the Workplace?

Thank you Brandi Fowler and LinkedIn News for the opportunity to talk about the affects of Long Covid in the workplace and its impact on the disability community. These are important conversations and folks living with Long Covid should be aware of their rights under the ADA.

#WorkplaceCulture #ReasonableAccomodations #Covid #Disabilities #DisabilityRights #DisabilityAdvocate #Disability #LongCovid #LinkedinNews

https://lnkd.in/ev2vqFBv