Toward a Society That Recognizes Diverse Individuality: Sharing Diverse Ways of Life | Yuko Takeda, Dean, Faculty of Nursing and Medical Care
2022.01.11
A TV program I watched casually had a profound impact on me. It was "The Human" on NHK (BS1), which was rebroadcast on December 4, 2021.
The program, titled "Ostomate Model: The Reason I Became a 'Model'" (first aired: February 13, 2021), is a documentary about Ema Otsuji-Pickles, a physician who had an artificial anus (stoma) created due to a rare disease called chronic intestinal pseudo-obstruction (CIPO).
After suffering from abdominal bloating and intestinal obstruction since her teens and being hospitalized dozens of times, she became an "ostomate" (a person with a stoma, an excretory opening created on the abdomen from the intestine) in her 40s.
A stoma lacks a sphincter muscle like a natural anus, so it is necessary to constantly wear a bag called a pouch to collect waste. Product development for pouches focuses on how to ensure a secure, durable seal without irritating the skin. By choosing a pouch that suits the individual, it is possible to lead a social life without hindrance to daily activities or many sports.
As I specialize in nursing for patients with hereditary tumors, I have been involved in the care of many people who have had stomas created for the treatment or prevention of hereditary colorectal cancer. While the impact on body image is significant and psychological care is crucial, I have always believed that being able to self-manage the pouch and live a social life without disruption leads to acceptance of the stoma and psychological stability. In fact, many people, even if they experienced trouble at first, gradually gained confidence, expanded their activities, and reported returning to sports clubs and competitions. I felt that the development of pouches has greatly contributed to improving the QOL (quality of life) of ostomates.
Ema's activities were not content to remain satisfied with the status quo in Japan. Although the pouches used in Japan are high-performance, many are transparent types that reveal their contents, prioritizing the function of making it easy to observe the stoma, the fit of the appliance, and the excrement. While there are opaque, skin-colored options for certain uses, they are not designed with style in mind. Ema expressed that no matter how functional they are, seeing the waste feels like "having your self-esteem gradually scraped away with sandpaper." She lobbied companies to make stylish black and white pouches used by ostomates overseas readily available and secured a promise to develop completely opaque pouches that do not show their contents. Then, she began her activities as an ostomate model, a role active overseas. Ostomate models have the role of promoting special products (not just pouches, but also specially designed underwear and swimwear) by wearing them as models, and conveying their needs to companies to create new products. As Japan's first ostomate model, Ema began activities to raise broad awareness about ostomates, such as posting photos of herself in a swimsuit on social media that intentionally showed her pouch rather than hiding it. This demonstrated a way of life that evolves with the stoma, not treating its existence—which made it possible to overcome her illness—as taboo, but openly embracing it as one of her own characteristics.
She feels that the overwhelming cheerfulness and dynamism of ostomate models overseas also stem from the fact that their surrounding environment is vastly different from that in Japan. This is evident, for example, in the different choices of underwear available. Stylish, specialized underwear and swimwear can be chosen for various purposes, greatly expanding the scope of their lives. The involvement of ostomates themselves in this development, and their pursuit of life's possibilities, reflected differences in cultures that accept diversity and in societal support. On the other hand, she states that she came to realize the existence of a potential psychological barrier, saying, "When I feel scared of what others think, perhaps the source of that feeling is myself, the ostomate."
Her activities as a campaign model for a foreign-owned pouch manufacturer will surely encourage many ostomates, and I have high hopes that a society will be formed where people who were not even aware of their existence will accept it as a form of individuality and coexist.