Reminder: Not being able to see someone's disability doesn't mean they don't have one

When I was pregnant with my third child, I developed a condition called SPD (symphisis pubis dysfunction) that made standing or walking for too long excruciatingly painful. I was only four months pregnant and looked perfectly healthy, but I had to use the motorized carts at the grocery store to do my shopping. When I'd stop the cart and walk to a shelf to pick out an item, I often wondered if people questioned why I was using the cart. I wasn't elderly, and I wasn't injured. I barely looked pregnant and could clearly could stand and walk. Did they wonder if I was just lazy and selfishly taking the cart from someone who really needed it?

That was my first taste of what daily life can be like for the millions of people living with invisible disabilities.


I have friends and family members with rheumatoid arthritis, Ehlers-Danlos Syndrome, POTS (Postural Orthostatic Tachycardia Syndrome), and other conditions that sometimes affect their ability to move or be active. You can't tell that they struggle with pain or motility or exhaustion just by looking at them. They appear healthy, and they can move freely on some, or even most, days. But when they can't, they can't. They sometimes need assistance from canes or wheelchairs or other accommodations when their bodies flare up on them.

RELATED: #AbledsAreWeird offers a brilliant taste of the everyday crap people with disabilities deal with

A Facebook post from children's book author Kristen Waldbieser has gone viral for pointing out how such invisible disabilities can be overlooked or downplayed by others. Waldbieser has POTS, and she shared two photos of herself at a Disney theme park—one in a wheelchair with the caption, "This is me," and one where she's standing and posing with the caption, "This is also me."

She wrote:

"Yesterday I was at Disney, and I was using my wheelchair, which I need to go long distances (like a theme park). Anyway, I stood up to take a photo, and someone said (jokingly), 'Oh, the wheelchair is a hoax!' They quickly followed that they were kidding. However, the words stung with me. No, I don't need my wheelchair every day. But my wheelchair helps me get places that I otherwise probably couldn't go. But just because I don't need it every day, doesn't mean it's not real and it's not needed. It is not a hoax. And even jokingly, it's not ok to say that to someone. Not all disabilities or chronic illness looks the same. And it's time to break that stigma that those with chronic illnesses are faking it, which unfortunately, is heard by so many far too often. Long story short, you never know someone else's story, so please be kind with your words. đź’–"

The person may not have intended any harm in their "kidding" remark, but it's not funny to jokingly accuse someone of faking their needs—especially because so many people really do assume that their conditions aren't really that bad.

Such assumptions are particularly prevalent for young people with invisible disabilities. Isa Fitzgibbons, 15, was 12 years old when she was diagnosed with juvenile rheumatoid arthritis. One day, she was using a wheelchair at the zoo when she felt the judgment from a group of college students. "They seemed respectful enough," she said, "until I got up to walk to the restroom. Then they started pointing and whispering, and I felt like an exhibit for them."

That incident stopped her from using a wheelchair in public for a long time. "It's a struggle to explain why you're limping, or how you're not lazy, you're just in pain—or why you're in pain," she says.

Ramona Gregory, 20, has both Ehlers-Danlos Syndrome and POTS. She's always been active—in fact, she runs her own cheerleading business. But her active life is spotted with days where just basic functioning is difficult, a reality that was particularly challenging in high school.

"I had a plan in choir class where I would sit down when I needed to since I couldn't stand for the entire class period without fainting," she told Upworthy. "The teacher was really cool about it. Kids around me though kept assuming I was slacking off and would act annoyed at me. Some kids would even follow my lead and sit down after me, although the teacher would promptly tell them to stand."

Gregory also says it's difficult for her to use a walker in public, even when she needs to. "I'm constantly afraid someone is going to say I'm faking it because I don't use it every day."

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Gregory's mom, Heléna, also has EDS and POTS (both can be inherited, though aren't always). She sometimes feels anxious about using a disability parking plaque, fearing people might get mad because she doesn't appear disabled. But that's not the only struggle.

"One of the really difficult things is being afraid of posting or sharing really awesome things you do because it looks like you're just living it up and not really disabled," she told Upworthy. "People don't see the preparation and the aftermath of participating in both normal functions and the fun stuff."

She enjoys mountain biking, for example, but only rides with her husband or by herself. "I can't just jump on my bike and go," she says. "My heart rate, blood pressure, and adrenaline are unpredictable, and I"m on and off the bike continually. I tried to ride with others but found I had to explain everything, like I was listing off excuses. Others would get annoyed. One time I ditched my bike and passed out on the side of the trail. The response was that I needed to get myself together because I was embarrassing the other riders in our group. People just don't get it, even when it comes down to actually losing consciousness."

"We spend a lot of time faking normalcy just so we don't draw attention or judgment. We hide what we do to avoid judgment," she says. "That's really it. People judge and that sucks."

It does suck. But hopefully stories like these will help more of us recognize that people are struggling with disabilities or chronic illnesses that we can't see and have no room or reason to judge anyone else's accommodations.

Courtesy of Amita Swadhin
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In 2016, Amita Swadhin, a child of two immigrant parents from India, founded Mirror Memoirs to help combat rape culture. The national storytelling and organizing project is dedicated to sharing the stories of LGBTQIA+ Black, indigenous people, and people of color who survived child sexual abuse.

"Whether or not you are a survivor, 100% of us are raised in rape culture. It's the water that we're swimming in. But just as fish don't know they are in water, because it's just the world around them that they've always been in, people (and especially those who aren't survivors) may need some help actually seeing it," they add.

"Mirror Memoirs attempts to be the dye that helps everyone understand the reality of rape culture."

Amita built the idea for Mirror Memoirs from a theater project called "Undesirable Elements: Secret Survivors" that featured their story and those of four other survivors in New York City, as well as a documentary film and educational toolkit based on the project.

"Secret Survivors had a cast that was gender, race, and age-diverse in many ways, but we had neglected to include transgender women," Amita explains. "Our goal was to help all people who want to co-create a world without child sexual abuse understand that the systems historically meant to help survivors find 'healing' and 'justice' — namely the child welfare system, policing, and prisons — are actually systems that facilitate the rape of children in oppressed communities," Amita continues. "We all have to explore tools of healing and accountability outside of these systems if we truly want to end all forms of sexual violence and rape culture."

Amita also wants Mirror Memoirs to be a place of healing for survivors that have historically been ignored or underserved by anti-violence organizations due to transphobia, homophobia, racism, xenophobia, and white supremacy.

Amita Swadhin

"Hearing survivors' stories is absolutely healing for other survivors, since child sexual abuse is a global pandemic that few people know how to talk about, let alone treat and prevent."

"Since sexual violence is an isolating event, girded by shame and stigma, understanding that you're not alone and connecting with other survivors is alchemy, transmuting isolation into intimacy and connection."

This is something that Amita knows and understands well as a survivor herself.

"My childhood included a lot of violence from my father, including rape and other forms of domestic violence," says Amita. "Mandated reporting was imposed on me when I was 13 and it was largely unhelpful since the prosecutors threatened to incarcerate my mother for 'being complicit' in the violence I experienced, even though she was also abused by my father for years."

What helped them during this time was having the support of others.

"I'm grateful to have had a loving younger sister and a few really close friends, some of whom were also surviving child sexual abuse, though we didn't know how to talk about it at the time," Amita says.

"I'm also a queer, non-binary femme person living with complex post-traumatic stress disorder, and those identities have shaped a lot of my life experiences," they continue. "I'm really lucky to have an incredible partner and network of friends and family who love me."

"These realizations put me on the path of my life's work to end this violence quite early in life," they said.

Amita wants Mirror Memoirs to help build awareness of just how pervasive rape culture is. "One in four girls and one in six boys will be raped or sexually assaulted by the age of 18," Amita explains, "and the rates are even higher for vulnerable populations, such as gender non-conforming, disabled, deaf, unhoused, and institutionalized children." By sharing their stories, they're hoping to create change.

"Listening to stories is also a powerful way to build empathy, due to the mirror neurons in people's brains. This is, in part, why the project is called Mirror Memoirs."

So far, Mirror Memoirs has created an audio archive of BIPOC LGBTQI+ child sexual abuse survivors sharing their stories of survival and resilience that includes stories from 60 survivors across 50 states. This year, they plan to record another 15 stories, specifically of transgender and nonbinary people who survived child sexual abuse in a sport-related setting, with their partner organization, Athlete Ally.

"This endeavor is in response to the more than 100 bills that have been proposed across at least 36 states in 2021 seeking to limit the rights of transgender and non-binary children to play sports and to receive gender-affirming medical care with the support of their parents and doctors," Amita says.

In 2017, Mirror Memoirs held its first gathering, which was attended by 31 people. Today, the organization is a fiscally sponsored, national nonprofit with two staff members, a board of 10 people, a leadership council of seven people, and 500 members nationally.

When the pandemic hit in 2020, they created a mutual aid fund for the LGBTQIA+ community of color and were able to raise a quarter-million dollars. They received 2,509 applications for assistance, and in the end, they decided to split the money evenly between each applicant.

While they're still using storytelling as the building block of their work, they're also engaging in policy and advocacy work, leadership development, and hosting monthly member meetings online.

For their work, Amita is one of Tory's Burch's Empowered Women. Their donation will go to Mirror Memoirs to help fund production costs for their new theater project, "Transmutation: A Ceremony," featuring four Black transgender, intersex, and non-binary women and femmes who live in California.

"I'm grateful to every single child sexual survivor who has ever disclosed their truth to me," Amita says. "I know another world is possible, and I know survivors will build it, together with all the people who love us."

To learn more about Tory Burch and Upworthy's Empowered Women program visit https://www.toryburch.com/empoweredwomen/. Nominate an inspiring woman in your community today!

Woman shares breakup letter to foot before amputation.

It's amazing how even the most harrowing of decisions can be transformed with a good sense of humor.

After suffering an ankle injury during a horseback riding accident at age 13, Jo Beckwith had exhausted all other options to escape from the lingering pain from the fracture, leaving her with no better choice than to amputate.

She could have buckled under the weight of such life-altering news (no one would blame her). Instead, Jo threw a farewell party the day before her surgery. Some of her friends showed up to write a goodbye letter, fun and lighthearted messages scribbled directly onto the ankle.

@footlessjo

The messages that came into #amputation with me! #funny #therapeutic #disability #amputee #fypă‚·


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When a pet is admitted to a shelter it can be a traumatizing experience. Many are afraid of their new surroundings and are far from comfortable showing off their unique personalities. The problem is that's when many of them have their photos taken to appear in online searches.

Chewy, the pet retailer who has dedicated themselves to supporting shelters and rescues throughout the country, recognized the important work of a couple in Tampa, FL who have been taking professional photos of shelter pets to help get them adopted.

"If it's a photo of a scared animal, most people, subconsciously or even consciously, are going to skip over it," pet photographer Adam Goldberg says. "They can't visualize that dog in their home."

Adam realized the importance of quality shelter photos while working as a social media specialist for the Humane Society of Broward County in Fort Lauderdale, Florida.

"The photos were taken top-down so you couldn't see the size of the pet, and the flash would create these red eyes," he recalls. "Sometimes [volunteers] would shoot the photos through the chain-link fences."

That's why Adam and his wife, Mary, have spent much of their free time over the past five years photographing over 1,200 shelter animals to show off their unique personalities to potential adoptive families. The Goldbergs' wonderful work was recently profiled by Chewy in the video above entitled, "A Day in the Life of a Shelter Pet Photographer."