Barbie wheelchair offers a peek into wheelchair users' reality

It seems like everyone is looking at life through the lens of the Barbie movie this summer.

So when Katie Pennick, a London-based disability advocate, tweeted a thread last month — “barbie’s wheelchair vs my actual wheelchair: a critical comparison” — millions decided she was onto something.

Over 2 million people have read the thread on the Platform Formerly Known as Twitter since late July, so we decided to run the idea past New Jerseyans who also use wheelchairs: What does Mattel's doll get right and wrong about life on wheels?

As Pennick said, “strap in.”

The first tweet in the thread noted that the doll’s chair is made of lightweight plastic, making it "easy to push, but not particularly durable. even the cushion is made of (textured!) plastic, offering neither support nor comfort — and will likely result in pressure sores."

When it comes to wheelchair design, those who are able to afford a light chair with a good seat are the fortunate ones, New Jersey activists said.

The little plastic woman may feel no pain. But in real life, constant use of the upper body to propel a heavy chair means increased risk of rotator cuff injuries, neck pain and back pain. Wheelchair users are also more susceptible to developing pressure sores due to prolonged periods of sitting in one position. The interviewees agreed: Having the right chair and seat is crucial.

“There's a whole variety of chairs that are available to people. The lighter-weight the chair is, the less likely people are to be injured by repetitive use injuries," said Montclair's Colleen Roche, 45, who began using a wheelchair at age 12. "So having a lightweight chair is definitely somewhat of a privilege in our community,”

Barbie's wheelchair, a black padded seat with a hot-pink frame, got Javier Robles, a Rutgers professor and wheelchair user, thinking about the limited options available to many people.

“Barbie in a wheelchair is great and it helps kids empathize a little more with people with disabilities. But the reality for people with disabilities is that sometimes you don't get the choice of which wheelchair you want. Sometimes it's what the government is going to pay for,” Robles said, referring to limitations imposed by what Medicare and Medicaid are willing to cover.

"Wheelchairs range from $10,000 to $50,000 depending on what kind of chair you're talking about," Robles said, "so cost is an issue, and people who are poor can't afford a lot of these things. So they make do with whatever they get, which is not always the best thing for them."

Having a wheelchair “fitted” also costs money, said Robles, 56, of Edison. His power chair was tailored to his needs over 10 sessions.

“They literally did a pressure mapping of my cushion. They check how long are your legs? How tall is your back? Then they gave me a chair based on those needs. But if you don't get that, you're more apt to develop skin ulcers or pressure sores from sitting in either a cushion that doesn't work for you or a chair that basically is not fitted for your body type,” he said.

Conditions that necessitate wheelchair use often make maintaining good posture challenging, and that can lead to further health issues such as back pain and breathing problems. Muscle weakness is also common, hindering everyday tasks like getting in and out of the wheelchair. A sedentary lifestyle can contribute to weight gain and higher risks of heart disease and diabetes.

“The human body is not designed to be in a seated position all day long," Roche said. "For a lot of wheelchair users, we are not able to make those natural weight shifts that everybody else who doesn't use a wheelchair can, when your body will instinctively move around if something doesn't feel right."

Life in a wheelchair can also have significant psychological effects, advocates told us. Limited mobility and the barriers wheelchair-users face each day can lead to feelings of frustration and isolation. Some experience a sense of loss for the abilities they once had, spurring depression and anxiety.

Wheelchair users also have to navigate stereotypes and tricky social interactions.

“As a woman, being lower than everybody else sets up a really uneasy, really uncomfortable power dynamic,” Roche said. “If I'm always lower than the person I'm talking to or relating to, it makes it very hard for me to be taken seriously by a lot of people, no matter what I'm trying to convey. It makes it difficult for me to look people in the eye and be on an equal playing field with them."

Wheelchairs can also bring unwanted attention, although Scott Chesney, 53, of Verona, said he doesn’t mind when a child’s curiosity makes them stare.

“I've had people with kids who just come up and naturally are intrigued and have zero fear, and there'll be times where parents will grab them and say, ‘No, no, no, stay away,'" Chesney said. "You can't say that if the kid's intrigued. I tell the parents 'I'm fine. Your child is intrigued. There's no worry here or anything.' But not everyone's me. I try to make things as comfortable as possible."

There are people who feel comfortable approaching someone in a chair, and there are people for whom it is “scary," he added.

“I don't take offense to it. I think when you see someone that's in a wheelchair, there's a natural curiosity," said Chesney, who will pop wheelies in his chair to make kids feel more at ease. "What happened to them? Why are they in this wheelchair? My mom actually said, ‘You should just tell people why you're in a wheelchair.’”

That was a step too far, Chesney said. After all, he does also have a right to privacy. But people are naturally curious, and he understands. There is, however, one reaction he won’t tolerate.

“I will never, ever, like it when someone says, ‘Oh, you poor dear, you're in a wheelchair.’ I will, in a nice way, say, 'Hey, you know what? I have a very good life.’ I don't want someone to see me as pathetic or weak."

Chesney encourages understanding and learning about each person's unique story rather than making assumptions based solely on their use of a wheelchair.

Returning to thoughts of Barbie’s plastic wheelchair, Roche pointed out that real wheelchairs can be tricked out. Pennick's chair also has pink accents, she noted in her thread, though she couldn't match Barbie's "slay move": her name emblazoned on the back of the chair in pink script.

“Chairs come in that hot-pink color," Roche said. "You could add lights to it. I'm a pretty plain Jane, but I know friends who have bedazzled the whole chair with rhinestones. For a lot of us, our wheelchairs are an extension of our body. This whole notion that we're confined to a wheelchair or tied to a wheelchair couldn't be further from the truth. It's my wheelchair that allows me to be as independent and as free as I can be."

Another of Pennick’s tweets that rings true for Roche focuses on a handbag: “I see no bag? she’s not gonna be holding a purse if she’s self-propelling…”

A little purse would likely fly out of her lap while her hands are on her wheels.

Twenty years ago, when Roche was in college, there weren’t many adaptive fashion options, such as bags and purses that were designed to fasten to wheelchairs. So she hung a backpack on the back of her own chair.

“I still use the backpack. But I also have some cute purses that I use when I'm going out to a fancy event. A lot of my friends find ways to adapt them and wear them kind of as a cross-body bag so that we can carry the bag and it's easily accessible to us, and hopefully we're looking cute, too,” she said.

New Jersey advocates spoke of the numerous ways they’ve had to adapt and how that, in turn, led to resilience. Roche is a disability health and wellness consultant. Chesney is a life coach and motivational speaker. Robles directs Rutgers' Center for Disability Sports, Health and Wellness.

All of them can be found in the spotlight, advocating for their peers in wheelchairs. It feels empowering, they said, to ensure that wheelchair users aren't hidden. As Pennick put it:

"i’m so happy that wheelchair barbie exists, and i can’t tell you how thrilled childhood-katie would have been to play with someone that looks like me."

Gene Myers covers disability and mental health for NorthJersey.com and the USA TODAY Network. For unlimited access to the most important news from your local community, please subscribe or activate your digital account today.

Email: [email protected]

Twitter: @myersgene