August 22, 2019

Disability selfies

More than 9 million people around the world have clicked on a photo of a young, strikingly beautiful 23-year-old British woman wearing a bikini. Is she a supermodel? Not yet. In addition to her bathing suit, the photo also shows colostomy bags attached to the woman’s lower abdomen, looking like strange, flesh-colored petals.

The woman is Bethany Turner, from Worcester, England, and she has Crohn’s disease and was fitted with colostomy bags in 2010 after she nearly died when her bowel ruptured. Crohn’s affects the digestive system, causing severe inflammation and affecting a person’s ability to absorb nutrients, digest food and remove waste.

According to the Daily Mail, Turner was diagnosed with Crohn’s when she was just 3 years old.

After photos of Turner photos were posted on the Crohn’s and Colitis UK Facebook page, other young women around the world with colostomy bags began to post selfies. And a few buff young men have done the same.

Then, on July 14, , Sierra Sandison, the new Miss Idaho, posted a photograph of herself wearing her tiara, sash, ultramarine-blue gown and her diabetes pump clipped to her top. She also wore the insulin pump, attached to her bikini bottom, during the swimsuit competition. Overnight, Sandison has become a new hero to the type 1 diabetes community, many of whom wear insulin pumps instead of having to use multiple daily injections to control the disease.

Miss America 1999, Nicole Johnson, also had type 1 diabetes, and although she advocated for diabetes funding during her reign, Johnson never wore her insulin pump publicly. In a recent NPR interview, she is quoted as saying, “Our culture seems to be more accepting today, as opposed to when I was diagnosed in 1993.”

Many younger amputees are also posting selfies on social media sites with their amputated limbs visible, clearly part of the younger generation’s inclination to share much of their lives online. As the Vice website article on “Hospital Selfies are Therapeutic, not Narcissistic,” said, “There are more than 400,000 millennials living with disabilities in America alone, with an untold number sharing their lives on Instagram…To those on the other side of the lens, graphic images are a way of forcing others to confront a reality most would rather not: that while the body may break, life limps on, just as complex and human as it was before.”

Although I was at first somewhat stunned by these “show all” photographs, I realized that these posts were an important expression of self-identify and individual pride, providing visible badges of courage. I had earlier witnessed this trend when I was working with the Los Angeles chapter of the American Diabetes Association, and asked to represent our organization at a Camp Conrad Chinnock gala dinner.

Located in the Barton Flats area of the San Bernardino Mountains, Camp Conrad Chinnock is a year-round educational program and summer camp for kids and teens with type 1 diabetes. It has grown from 17 campers in 1957 to more than 600 this year.  Much to the delight of our son with special needs, the DJ started spinning Hip Hop and Techno music after the formal dinner program, encouraging everyone to get up and dance.

As we were on the dance floor doing our best to keep up with the kids and teenage counselors, I realized that almost everyone else on the dance floor was wearing an insulin pump, some precariously balanced on the thin straps of evening dresses favored by young women everywhere. Many of the guys were sporting their pumps as well, clipped onto the belt of their dress pants, some jazzed up with colorful, personalized holders or stickers.

Over the 4th of July weekend, NPR broadcast a very good, accurate and comprehensive series on family caregiving. The web edition of that series featured a photograph of a Sacramento father, James Lee, carrying his 16-year-old son Justin, who was wearing only a diaper. Justin, who weighs 100 pounds, has severe cerebral palsy, a seizure disorder, and can’t talk or walk.  The father’s love for his son is clearly evident. While some commentators on Facebook and the NPR website thought it was a truthful and caring photo, capturing both the compassion and challenges of everyday life of taking care of teens and adult children with disabilities, others found it disrespectful.

I have been thinking a lot about that photo. Our son has a similar diagnosis, although he is able to get around with a walker and is talking more and more. I’ve been trying to decide whether that photo was helpful in creating more public understanding of how families take care of a loved one with a disability, or disrespectful to Justin, who can’t communicate how he feels about it.

After thinking it over, I am drawn back to the root of the word, “selfie” which, as defined by the Oxford Dictionary, means, “A photograph that one has taken of oneself, typically one taken with a smartphone or webcam and uploaded to a social media website.” Without consent, it’s not really  a “selfie” at all, just someone else’s image.