+
Heroes

It's Disability Pride Month. You should know that I'm proud to be disabled.

It's Disability Pride Month. You should know that I'm proud to be disabled.

Here's something you should know about me: I'm proud to be disabled.

I can picture some of you looking very perplexed right now. Admitting this fact about myself is something I may have said in a hushed tone just a few years ago. Why? By all accounts, I'm not supposed to be "proud" of my disability. Not according to society, at least. But then again, I've never given much thought to societal conventions. Thankfully, I'm not alone.

July is Disability Pride Month, which is sparking so many much-needed conversations about living with a disability and what it means to celebrate that. People with disabilities make up the largest minority group in the United States, with 61 million adults living with a disability, according to the CDC—that's one and four people.

Disability Pride Month is a time to celebrate people with disabilities. It's also a time to call for changes toward a more inclusive, accessible world. The first Disability Pride Day was held in 1990, coincidentally, the same year as the passage of the Americans With Disabilities Act (ADA); the pivotal legislation was the biggest disability rights win of our generation and it "prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life—to enjoy employment opportunities, to purchase goods and services and to participate in State and local government programs and services."

Maybe that's why this year, as we celebrate the 30th anniversary of the ADA, this idea of disability pride feels all the more poignant and important. While I may have reached a place of pride now, I didn't always feel this way.

I was born with Freeman-Sheldon syndrome, a genetic bone and muscular disorder that primarily affects the face, hands and feet. I've had around 25 surgeries to straighten my legs, as well as correcting my scoliosis. I spent the majority of my formative years in and out of the hospital. At times, what was harder than all those surgeries was feeling so different from everyone else. I grew up never seeing anyone that looked like me— not on TV, not in movies, not in books or even magazines. At a time when all I wanted to do was fit in, it was hard to stand out so much.

People are shocked when I say I'm proud to be disabled because we still live in a society where pride and disability don't belong in the same sentence. Disabilities are seen as shameful. They are looked at as something bad. People should feel sorry for us. Who would want to be disabled? That's a question I've heard far too often from too many people. I've had individuals tell me that a disability and wheelchair is nothing to be proud of, it's nothing to celebrate and that it's something I should be ashamed of.

Of course, people's cruel words are only parroting the messages society sends about disabilities. We live in a culture that treats disability as something bad or negative. From a young age, disabled people are taught to be ashamed of something that's a huge part of their identity. I felt ashamed of my disabled body for many years; I wasn't comfortable in my own skin and, interestingly, becoming a writer that helped me change my perspective. The more I wrote about disabilities and about my life, the more I felt a cleansing of sorts. It was as if the act of writing was literally rewriting the voice in my head that had played on a loop for so long. The voice that told me I was ugly. The voice that told me I was unworthy and unlovable. The voice that told me my disability was shameful. It was as if I was shedding my old skin, making way for self-love and self-acceptance after too many years of shame and hatred.

I can't help but feel like 2020 is a reckoning of sorts when it comes to disabilities—a moving of the needle toward inclusion, accessibility, opportunity and acceptance. Those are the things disability activists have been fighting for years to achieve. Because where the ADA is about literal access, Disability Pride Month is all about visibility and representation. It's about inclusion. It's about opportunity. It's about celebration. It's about having a seat at society's table.

I'm forever proud to claim my seat, to unapologetically take up space and to be included. Finally, we're seeing this trend of disabled people reclaiming what it means to have a disability. We don't typically see the words pride and disability together, but for disabled people like me, the two words go hand in hand. "Disability pride" is a declaration as much as it is a celebration, where the disability community is shouting, "Yes, disabled people want to be seen and heard. And guess what? We're not going anywhere!"

My disability pride has taught me to be more vocal. To speak up. And, yes, to show my face, especially through countless selfies on social media. Disabled people are here and we're proud. While Disability Pride Month may be about the disability community, it's also important to have support from able-bodied people.

A huge part of disability pride centers around identity. I know things like "I don't see your disability or wheelchair" are meant as compliments, but those words are actually quite hurtful. It's dismissive of my lived experience as a woman with a disability. It's like saying my disability doesn't exist. Since my disability is a part of my identity, it's like saying I don't exist. It's, again, viewing disability through the ableist lens of disability is bad and able-bodied is good. It's assuming that I want to be seen as "normal." But guess what? Spoiler alert...I am disabled. And it's not a bad word.

My hope is that one day, we won't need any entire month to remind people that it's okay to celebrate disabilities and that society will celebrate us because they see our inherent worth and dignity just like we do. Until that day, though, here's a reminder one more time: Please, see my wheelchair. See my disability. See all of me.

Sponsored

Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

True

It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

Joy

Sorry, Labradors. After 31 years, America has a new favorite dog.

The American Kennel Club has crowned a new favorite.

via Pixabay

A sad-looking Labrador Retriever

The sweet-faced, loveable Labrador Retriever is no longer America’s favorite dog breed. The breed best known for having a heart of gold has been replaced by the smaller, more urban-friendly French Bulldog.

According to the American Kennel Club, for the past 31 years, the Labrador Retriever was America’s favorite dog, but it was eclipsed in 2022 by the Frenchie. The rankings are based on nearly 716,500 dogs newly registered in 2022, of which about 1 in 7 were Frenchies. Around 108,000 French Bulldogs were recorded in the U.S. in 2022, surpassing Labrador Retrievers by over 21,000.

Keep ReadingShow less
Pop Culture

Melissa McCarthy describes Halle Bailey’s endearing habit on ‘The Little Mermaid’ set

Even the guy holding the boom mic said it was his “favorite thing.”

Melissa McCarthy shares Halle Bailey's "divine" habit.

Music can truly feel like magic sometimes, especially when someone has the voice of an angel—or perhaps a wistful, land-loving mermaid.

Reviews of Halle Bailey's performance in Disney's new live-action "The Little Mermaid" have been overwhelmingly positive, which isn't too surprising considering her vocal talents. But according to co-start Melissa McCarthy, who plays the wicked sea witch Ursula in the film, Bailey's siren-like appeal didn't end when the cameras stopped rolling.

In a press interview for the movie, McCarthy shared that Bailey had an endearing habit of quietly humming all the time, sometimes without even realizing that she was doing it. McCarthy's description of the way she and even members of the sound crew reacted to Bailey's constant lovely humming is a testament to the heartwarming, wholesome magic of music.

Keep ReadingShow less

A mother with a megaphone goes on strike.

Every parent knows that sometimes their kids, especially teenagers, can say things in the heat of the moment they don’t really mean. But the mother at the center of this story took her teenage son’s outburst seriously and turned it into an opportunity to teach him a lesson. The question is, did she go too far to make a point?

A 35-year-old mom wanted to learn if she had been too hard on her 14-year-old son, so she shared her story on Reddit’s AITA subforum (we've abbreviated the forum's name to avoid printing foul language). AITA is where people vote on whether the poster was right or wrong in how they handled a situation.

“Lately, he has been acting out a little at home and school, so I decided to sit him down to try and figure out what was happening,” the mother wrote in a post that received over 800 comments. She said that the boy had been cursing out his parents as well as his teacher.

Keep ReadingShow less

A woman is upset with her husband and wants to leave him.

There are a few big reasons why 70% of divorces in the United States among heterosexual couples are filed by women. Women have more economic opportunities than in decades past and are better positioned to care for themselves and their children without a husband’s income.

Another big reason is that even though the world has become much more egalitarian than in the past, women still bear the brunt of most of the emotional labor in the home. Gilza Fort-Martinez, a Florida, US-based licensed couples’ therapist, told the BBC that men are socialized to have lower emotional intelligence than women, leaving their wives to do most of the emotional labor.

Secondly, studies show that women still do most of the domestic work in the home, so many are pulling double duty for their households.

Keep ReadingShow less
Pop Culture

Youth choir from South Africa moves 'AGT' audience with a touching tribute to Nightbirde

The group was so inspired by the former 'AGT' contestant that they sang her song, "It's OK," leaving everyone in tears.

America's Got Talent/Youtube

Mzansi Youth Choir received a Golden Buzzer for their cover of Nightbirde's "It's OK."

Season 18 of “America’s Got Talent” kicked off on May 30th, and one of the most memorable acts of the night came in the form of a touching tribute to a former well-loved ‘AGT’ contestant.

Hailing from South Africa, the all-white-clad Mzansi Youth Choir began a capella singing “It’s OK,” which was instantly recognized as a tune created by Nightbirde—a young woman remembered not only for her lovely singing voice, but also for her incredible emotional resilience.

Back in 2021, Nightbirde arrived on the stage with only a 2% chance of surviving a third round of cancer. But still, she kept to her philosophy of "You can't wait until life isn't hard anymore before you decide to be happy." She passed away in Feb 2022, but not before sharing her beautiful heart with the world.
Keep ReadingShow less
Photo by Tod Perry

A recreation of the note left on Brooke Lacey's car.

If you are having thoughts about taking your own life, or know of anyone who is in need of help, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (273-8255) or text "HOME" to the Crisis Text Line: 741741.


There’s an old Hebrew saying that if you “save one life, you save the world entire.” Who knows if Brooke Lacey, 22, had that lofty goal when she began a campaign in 2020 to help uplift people’s spirits during the first COVID-19 wave.

But her kind efforts may have done just that.

Lacey has struggled with mental health issues throughout her life and she knew that people like her were going to have a really hard time during COVID-19 lockdowns. A study from May 2021 found that the New Zealand population had “higher depression and anxiety compared with population norms.” The study also found that “younger people” and “those most at risk of COVID-19 reported poorer mental health.”

Keep ReadingShow less