NORTH SALT LAKE — Several years have passed since the Make-A-Wish trip to Disney World where a stranger took pictures of Kendra and Maliyah Herrin, apparently surprised to see two very similar girls with one leg each.

It was so rude and unkind that they still remember how it felt.

That man’s action wasn’t a one-time event for the two, now 17 years old and seniors at a Utah high school. They are mostly typical siblings and teens despite growing up in the public eye because of the unusual circumstance of their birth.

Kendra and Maliyah Herrin were born conjoined at their abdomens, sharing a pelvis, kidney and liver and each controlling one leg. When they were 4, a team of six surgeons and 25 support staff at Primary Children’s Hospital separated them in a surgery that lasted 26 hours. The surgery captured international attention and the two have been the subject of a short documentary, a book by their mom and countless news stories. They were featured on Oprah more than once, too.

Both before and since the 2006 operation, they have been photographed and stared at too many times to count by people who are curious. The experience has forced them to think a lot about inclusion and what diversity means and how to talk to those who are somewhat different. And they’ve reached a pretty simple conclusion.

“Don’t be afraid to talk to someone. Don’t stare at them. Ask them if it’s OK to ask what happened. But be respectful about it,” says Kendra.

Maliyah nods. “Be nice,” she says.

Now on the verge of adulthood, the Herrins sat down with the Deseret News to talk about inclusion, disabilities and independence.

Some advice

The Herrin girls say they know others with disabilities who’ve been bullied, including another set of formerly conjoined twins who get hassled for having one leg each. Their own experience has been relatively more pleasant than that.

They say they’re not often excluded by other teens, in part because they grew up in their neighborhood and attend the same ward of The Church of Jesus Christ of Latter-day Saints, so they have a strong network. The two of them, a girl they’ve been pals with since third grade and a newer friend make up a tight circle that does pretty much everything together, Maliyah says.

Maliyah thinks maybe people are just nicer in Utah. Kendra thinks the fact they’re open to talking about their lives helps.

Both girls prefer curious people be direct.

“Asking is better than staring,” says Maliyah, who sometimes hears parents shush kids who are curious. She’d rather they told their kids to come over and ask their questions.

They’ve been asked about their challenges and why they each have one leg for as long as they can remember, choosing their words to match a questioner’s understanding. With little kids, they often simply say they were stuck together and doctors had to cut them apart. That’s how their parents, Erin and Jake Herrin, explained it to them.

They talk easily about their physical limitations. Kendra says her muscles are weaker than Maliyah’s. They move fast, using walkers when they are at school or elsewhere and scooting at home on wheeled stools like you see in a doctor’s office.

They’ve had a lot of operations and quickly hit some of the highlights.

Because they shared a kidney that Maliyah accessed through their shared liver (split during separation surgery), they knew she’d need a kidney transplant and their mom donated one of hers not long after they were separated. In May 2018, Maliyah had a second kidney transplant. Dad Jake was not a match, but gave one of his kidneys through a “chain” where a family member donates to a match in another family that needs one, who donates to a match in another family. Chains can involve several families. The girls jokingly note that exactly half their family, which includes twin brothers Austin and Justin, sister Courtney and their nephew Ezra, have one kidney each.

Maliyah had heart surgery and both girls have had surgeries to place and later replace titanium rods to straighten their backs, as well as smaller procedures to adjust those rods as the girls grew. Kendra had surgery to put a plate in her femur to straighten her leg so it pointed more forward and doctors later put in a bigger plate. Much of what happened was unpredictable, like the time Maliyah broke the rod in her back hopping on her one leg at a bridal shower.

Rod replacements “are the least of our problem surgeries. Those are easy,” says Kendra, who had an infection that required surgeries and kept her from the first month of her senior year. She still got A’s and B’s, she says proudly.

How many surgeries? “So many,” Kendra sighs while Maliyah nods solemnly.

They say they never brush off a question asked nicely.

Kendra offers another piece of advice for both would-be askers and those with disabilities who get asked: “You don’t know their situation, so be kind.”

But taking pictures? Never!

“You’re normal,” Kendra wants to say. “If I just took a picture of you, would you be OK with it? No, you would not!”

Orange Socks

Nothing’s more potent than personal experience when it comes to finding your own voice. Kendra had been thinking for some time that she and Maliyah might want to share their story with school kids when a woman at a YouTube convention asked if they’d do a video about bullying and inclusion for an initiative called Orange Socks. They’re just figuring out the details of that.

“I said, ‘Of course,’” remembers Kendra, who is clearly the more gregarious of the two. During an interview, both girls engage in the conversation and laugh a lot and Maliyah sometimes adds details or fills in gaps, but Kendra does most of the talking. She often speaks in sentences that start with “we.”

“It’s exciting to be asked to officially talk about it,” she says.

They have a Herrin Twins Facebook page and make cheerful, lively YouTube videos that have attracted a large audience. One has been viewed more than 115,000 times. Maliyah, shy in person, is animated on camera. Normally, she waits for someone else to start a conversation.

But facing a large group of kids or creating the video with Orange Socks is an idea that excites them. And they may team up with Stand Up for Kindness, whose message is “from bystander to upstander,” the anti-bullying message sometimes imparted at school assemblies. The Herrins, like those two groups, want everyone to be included despite differences.

Orange Socks is an initiative advocating for those with disabilities and their families, connecting them to resources and each other. It was founded by Utahn Gerald Nebeker, whose daughter Vanessa, 18, has Down syndrome. Before she was born, he started a nonprofit company, RISE Services Inc., to deinstitutionalize people with disabilities; it now provides varied supports to families of people with disabilities, including giving them a place to tell their stories.

“We talk about a diverse society and we think of race and religion and ethnicity, but we rarely include disability,” Nebeker told the Deseret News. “We are much richer the more diverse our society is.”

He named the initiative Orange Socks after a then-unidentified woman whose body was discarded off a road in Texas. She was wearing orange socks and that was what she was called until she was finally identified.

“I was struck that she was discarded, nameless,” Nebeker said. “I thought she was emblematic of people with disabilities that we discard, minimize and don’t employ.”

He only wears orange socks.

Adulthood’s close

Adulthood looms and the Herrin twins look forward to increasing independence with both excitement and a touch of nervousness.

“Being able to be on our own, just like any teenagers. ... No parents!” Kendra exclaims, then speaks more soberly. “But also different because I don’t feel like we are as independent as other teenagers. We have equipment; it’s heavy lifting.”  

They’ve always gotten care at Primary Children’s Hospital, but will likely transfer to another hospital now that they’re almost adults. Primary has been the site of all those medical procedures, even the unexpected ones.

They look quite a bit alike, but have different tastes, from their color preferences — Maliyah’s always loved yellow, but Kendra, who used to favor purple, now likes blue better — to their taste in food. It’s not just that Maliyah likes spaghetti and Kendra doesn’t. When they go out with friends, they often argue about where to eat.

“I think it’s just a sibling thing,” Kendra says with a shrug. “We definitely do the sibling thing where we fight about nothing.”

The future has always seemed a little out of their control and they’re just now starting to make plans. Kendra’s certified as a phlebotomist and may look for a job in that field once she turns 18 in early 2020. She’s had so many blood draws herself, she’s up to the job.

Maliyah’s not sure yet what she wants to do. They are both, to some degree, figuring that out.

Kendra drives now. She got her license this year. When she says other drivers scare her, everyone laughs; it’s a pretty universal terror. But that license has increased their independence even more, which is something their parents have always supported.

When the girls were 4 and facing surgery, their mom predicted they would have full and happy lives and would make their own choices. On a shared journey filled with surprises and challenges, no Herrin has ever doubted it.