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.

Breaking Stereotypes: The Unspoken Truth About Sexuality and Disability

Disabled young woman and her boyfriend holding hands. Unrecognizable Caucasian people.

So, here we are, celebrating Disability Pride Month. And you know what that means, right? No, not just the extra wheelchair-friendly ramps (though those are nice). It's time to talk about something that makes people more jittery than a squirrel on espresso: the sexual lives of people with disabilities.

As a person with disabilities myself, I've experienced firsthand the assumptions and stereotypes that can cloud this discussion.

In a powerful op-ed for Teen Vogue, Shatika Turner, a member of Planned Parenthood of Greater New York Advisory Council on Accessible Sex Education, eloquently stated, "The most harmful misconceptions when it comes to people with disabilities are that we don’t have sexual lives, our disabilities define our identities, or that we don’t experience a spectrum of sexual orientations or gender identities."

I couldn't agree more. From my dating life to interactions with medical professionals, I've faced surprise and disbelief when inquiring about reproductive healthcare or expressing my sexual desires. It's as if my wheelchair and service dog automatically desexualize me in the eyes of others. But let me be clear: my disability does not erase my sexuality.

In 2019, I was featured in Dan Savage's Savage Love Column, where I discussed the importance of recognizing and celebrating the sexual agency of people with disabilities. As I told Savage, "It's estimated that one in five people have a disability... So I would encourage [people] to use some of the mainstream apps—like Tinder, OkCupid, Bumble Inc., or Match—and put what they're after front and center."

So, this Disability Pride Month, let's break down these misconceptions. Let's talk about sex and disability. Let's make it as normal as discussing the weather or the latest episode of whatever reality TV show is popular these days.

Let's ensure that our sexual education curriculums are inclusive, affirming, and safe for our community. Let's normalize these discussions instead of hiding them in the shadows because of ignorance and discomfort.

Because guess what? People with disabilities have sex. We date. We fall in love. We break up. We swipe right and left. And it's high time we acknowledged that.

We are individuals with our own desires, needs, and identities. We deserve to be seen, heard, and understood in all aspects of our lives, including our sexual lives.

People With Disabilities Deserve Comprehensive Sex Education

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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The Power of Universal Design: A Look at Comcast's Innovative Remote

Illustration of Thomas Wlodkowski, VP of Accessibility at Comcast

Today as part of the ongoing celebration of Disability Pride Month, I want to spotlight a concept that's revolutionizing the way we think about accessibility: Universal Design. As a disability advocate, wheelchair user, service dog handler, and someone with a visual impairment, I've experienced firsthand the transformative power of Universal Design.

One of the most exciting examples of this is Comcast's Xfinity Large Button Voice Remote highlighted in a recent piece in Fast Company. This device, the brainchild of Thomas Wlodkowski, VP of Accessibility at Comcast, is the first remote built from the ground up with accessibility in mind. Wlodkowski, who has been blind since birth, has a simple yet powerful goal: “To make sure that the full menu of experiences within our entertainment service is available to as many customers as possible.”

Before this remote, Comcast customers seeking accessibility features were mailed a third-party device that was often seen as clunky and "medical." Wlodkowski knew there had to be a better way. He inspired his colleagues to create a device that was not only accessible but also intuitive and practical for all users.

The result? A sleek remote that’s 7 inches long and 2 inches wide, with larger buttons, bigger text, backlighting, an easier battery-change mechanism, built-in voice-command capability, and an instruction manual that speaks. The design process involved conducting focus group sessions with residents from New Horizons, a supported living facility in Connecticut for people with physical disabilities.

The response has been overwhelmingly positive. Comcast is now shipping about 2,000 units of the Large Button Voice Remote each week, up from 800 when the device first launched. The remote is free to all Comcast X1 and Flex customers, who can request it through Comcast’s Accessibility Support Center.

This remote is a testament to the potential of Universal Design in transforming the future of accessibility. It serves as a reminder that when we design with everyone in mind, we create a world that is more inclusive and equitable.

As we continue to celebrate Disability Pride Month, let's remember the power of Universal Design and continue to push for more accessible and inclusive designs in all aspects of our lives.

This Comcast exec did the impossible: He created a TV remote that’s actually well designed

Disability Rights in the Age of Surveillance: A Call for Inclusive Tech

A close up picture of an eye caught in the crosshairs of a laser.

As we celebrate Disability Pride Month, it's crucial to spotlight the urgent need for lawmakers to act in regulating surveillance technologies to protect the rights of disabled individuals. The rapid evolution of these technologies presents both opportunities and challenges, and it's our collective responsibility to ensure they are used ethically and inclusively.

In a recent article for The Hill, Sarah Roth and Evan Enzer of the Surveillance Technology Oversight Project (S.T.O.P.) noted that "Data-driven surveillance tech has been incorporated into nearly every sector of public life... However, countless studies have shown that these technologies are inherently biased and discriminatory because they are not being built, or used, with accessibility in mind."

These technologies, such as biometric monitoring software, often fail to account for the diversity and nuance of disabilities. This lack of inclusivity can lead to people with disabilities being singled out or experiencing dehumanizing punishment for simply existing as themselves.

For instance, Amazon’s Flex program uses an app to track delivery drivers' efficiency. This system overlooks the experiences of workers with disabilities, and the algorithmic management system has been reported to fire the slowest people — regardless of the individual’s disability or access needs.

Moreover, policies that require patrons to expose their faces to facial recognition surveillance cameras discriminate against immunocompromised individuals and those who rely on masks for health benefits.

We must ensure that technological change does not come at the expense of disability rights and justice. The recent ordinance introduced by the New York City Council to ban facial recognition in public places is a step in the right direction. But more needs to be done.

As these surveillance tools become more prominent and inescapable, the urgency with which lawmakers need to act cannot be overstated. We must continue to advocate for the rights of disabled individuals and push for regulations that ensure these technologies do not infringe on their rights and freedoms.

As we move forward, let's remember that our goal should always be to create a society where everyone, regardless of their abilities, can thrive.

New technology, same problems: We need to ensure accessibility for everyone

No Joke: Making Workplaces Disability-Friendly Can Be Fun!

Four people are socializing around a table. Three are out of focus in the background. A Wheelchair user with a gray beanie and glasses is in focus working on his laptop.

Today I thought I'd take a moment to talk about something that's as close to my heart as my love for Starbucks coffee: making workplaces more inclusive for employees with disabilities. As a disability advocate who's been navigating the world on wheels, and with Canine Companions® Pico, I've got a front-row seat to this rollercoaster ride.

First things first, understanding and acceptance. Charlotte Bramford, founder of Living With ME, told Verywell, "Don’t try to change them or fix them." I mean, we're not software updates, right? We don't need fixing. We just need understanding. So, let's put on our learning caps and get to work. Trust me, it'll lead to more smiles all around.

Education is the secret sauce here. Chelsea Bear, a digital creator and educator who lives with cerebral palsy, suggests reading books by disabled authors. It's like getting a backstage pass to the community without asking us to do the heavy lifting. Plus, you get to add 'well-read' to your list of virtues. Win-win!

Inclusion also means inviting us to the party. Even if we can't always go, we appreciate the invite. As Bramford puts it, "Support your disabled friend by including them in everything." And if we have to bail because our symptoms decide to throw their own party, be cool about it. We’d rather be there, trust us. Nobody plans on actively missing out on their own life.

Now, let's talk about workplace accommodations. According to a May survey by the U.S. Department of Labor's Job Accommodation Network (JAN), these aren't just fancy extras. They're like the secret ingredients in grandma's recipe that make everything work better, leading to benefits like improved company safety and increased productivity. Who knew, right?

Finally, advocating for representation. This means making sure we're in the picture, literally and figuratively. If your marketing campaign looks like it could use a diversity boost, here's your chance!

Remember, creating an inclusive environment isn't a sprint, it's a marathon. Or in my case, a really long wheelchair race. Starting now, commit to making workplaces more inclusive. Because at the end of the day, we're all just trying to get by in this crazy world. And remember, the best companies, like disabilities, are diverse. It's like a potluck dinner - a little bit of everything. And let's be honest, who doesn't love a good potluck?

Learn How Your Company Can Benefit From Providing Workplace Accommodations For Workers With Disabilities

Empowering Voices: The Importance of Validating Experiences in Disability

Overhead view of disabled badge in hands

Today, as part of the ongoing celebration of Disability Pride Month, I want to delve into a topic that is often overlooked but is crucial in supporting people with disabilities: validation.

Living with Cerebral Palsy, chronic pain, and visual impairment, I have experienced firsthand the power of validation. It's not just about acknowledging the existence of our disabilities, but also recognizing the impact they have on our lives.

Carmen Azzopardi, a writer living with type 1 diabetes, emphasizes the importance of small things done with intention in a piece today for Fashion Journal. She writes "Sometimes the little things make the biggest difference to someone who is navigating a world that is not built for them." This resonates deeply with me. Validation, in its essence, is a 'little thing' that can make a significant difference.

Allison Tennyson, a disability and chronic illness advocate, shares her journey on social media to empower others and break stigmas. She talks about the transformative power of validation when she started using mobility aids. "When I started posting on Instagram, there wasn’t anyone out there saying it’s okay to use mobility aids," she told InTheKnow. This validation gave her the courage to embrace mobility aids, which she says changed her life.

So, how can we validate the experiences of people with disabilities? Start by actively listening. When we share our experiences, it's not always about seeking solutions. Sometimes, we just need to be heard. Ask questions to better understand our perspective. Respect our autonomy and decisions regarding our disabilities. And most importantly, challenge and change the stigmas and misconceptions about disability.

Validation is a powerful tool. It can help us feel seen, heard, and understood. It can empower us to live our lives to the fullest, despite the challenges we face. As we celebrate Disability Pride Month, let's remember to validate the experiences of people with disabilities. It's a small action that can make a big difference.

How to show up for the people in your life with a disability

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.

From Inclusion to Exclusion: The Impact of Remote Work Reduction on Disabled Employees

A desktop computer sitting on top of a wooden desk.

As we navigate the post-pandemic world, many companies, including Farmers Insurance Group, Meta, The Walt Disney Company, Lyft, and Amazon, are scaling back remote work options. This decision, while seemingly benign, has profound implications for employees with disabilities.

The shift to remote work during the pandemic was a boon for many disabled employees. It eliminated commuting challenges, provided a comfortable work environment, and offered flexibility for medical appointments. The rollback of remote work threatens to undo these gains, potentially pushing disabled employees out of the workforce.

Meta's recent decision to require employees to return to the office three days a week starting in September is a case in point. A Meta spokesperson stated, "We're committed to distributed work, and we're confident people can make a meaningful impact both from the office and at home." However, the decision to limit remote work options contradicts this statement, particularly for disabled employees for whom "home" is not just a convenience, but a necessity.

Mark Zuckerberg, Meta's CEO, hinted at this change when he said that their internal analysis showed engineers who work in person "get more done." This perspective, while potentially valid for some, fails to consider the unique circumstances of disabled employees. For them, the ability to work remotely isn't about productivity alone; it's about accessibility and inclusion.

The scaling back of remote work options by these major companies sends a disheartening message to disabled employees: our needs are secondary. It's a stark reminder that the corporate world still has a long way to go in truly embracing diversity and inclusion.

We must advocate for a more inclusive approach to work arrangements, one that recognizes the unique needs and contributions of all employees, including those with disabilities.

Remote work should not be seen as a temporary pandemic measure, but as a permanent option that can foster a more diverse and inclusive workforce.

A New CEO Says Employees Can’t Work Remotely After All, and They Revolt

How AI Can Make Disabled People Stronger Advocates

Recently, a neighbor in my apartment complex became increasingly irate anytime Canine Companions® Pico and I would pass her door. She claimed his incidental shedding as we walked past was done intentionally, and she didn't appreciate his ruining her welcome mat, which she had placed in a public hallway. Her disdain became so pervasive she was unwilling to engage in civil discourse.

When I raised my concerns with the property manager, I was met with the suggestion that I relocate if we couldn't find a "peaceful solution." It was a frustrating and exhausting experience.

I went into advocacy mode. I knew the laws. I knew I could address the situation from the perspective of the ADA, housing laws, and even state fire codes. But I just didn't have the energy. I thought briefly about dropping the issue completely, but I knew that would be to my detriment as the situation was ongoing.

And then it came to me: AI is my friend.

I turned to AI to craft a letter to my leasing office, documenting our meeting, their response, and the concerns I still had. I worked with the AI in much the same way I would engage with a friend or colleague at first. Imagine explaining what happened to them over text. I didn't think about it too much. I simply documented what happened as best I could without being overly concerned with whether I was doing it "right."

As I progressed, I wanted something with a bit more force, something harder for management to dismiss. So I tweaked my approach. I asked the AI to cite relevant local laws that might strengthen my position. Almost instantly, I was presented with research pertaining to building safety, means of egress, and fire codes, as well as a bit of legal language.

No system is perfect, and I still did my due diligence in verifying the accuracy; nothing will ever replace the human element and the lived experiences that shape advocacy work. But I had a very strong foundation in record time. The hours and aggravation saved, the research placed right in front of me in the blink of an eye? I couldn't help but think of the old Mastercard commercial.

Comcast Internet: $50 a month

Subscription to ChatGPT-4: $20 a month

Energy saved as AI helps you advocate? Priceless.

AI is the ultimate life hack, and I can't wait to see what's next. This technology is here, and used wisely, can be the ultimate energy saver. Yes, it's only as good as its inputs and the questions we ask, but that is the very nature of the human brain too. When we ask better questions, we get better answers. By leveraging these technologies, disabled people can continue to do the advocacy that fuels us without feeling burnt out by the nitty-gritty. For those just starting on their advocacy journey, the playing field is instantly leveled. The question isn't "Should we be using this technology?" Rather, the focus should be on how.