Tuesday, December 22, 2020

In Her Words: ‘Such a personal, private thing’

When home pregnancy tests don't measure up
A tactile at-home pregnancy test could be a welcome change for making the product more inclusive.The&Partnership

“I felt like the information belonged to me, and I shouldn’t have had to share it with anyone else.”

— Sarah Clark, an author, on taking pregnancy tests

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The first time Sarah Clark learned she was pregnant, it was her friend who told her the news. But it wasn’t because Ms. Clark, 40, was too nervous to read the results of her at-home pregnancy test. It was because she couldn’t read the results. Ms. Clark is blind. Born without sight in her left eye, Ms. Clark lost her vision completely when she was 20 after an injury caused the retina in her right eye to detach.

Ms. Clark, whose husband is also blind, now has a 3½-year-old daughter, but that first positive result in 2010 ended in a miscarriage. It also marked the beginning of a long journey of pregnancy losses and fertility treatments.

Over the course of six years, Ms. Clark took countless pregnancy tests with friends cautiously telling her the results. All the while, Ms. Clark was frustrated by the lack of privacy.

“I wouldn’t have let anyone know until I was at a more comfortable stage in the pregnancy,” Ms. Clark, an author, said. “Pregnancy tests are such a personal, private thing. I felt like the information belonged to me, and I shouldn’t have had to share it with anyone else if I didn’t want to.”

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The first home pregnancy test, introduced in 1977, was promoted as a “private little revolution” for women. Today’s tests — of which 20 million are sold in the United States each year — are packaged largely in pink, purple or blue boxes, and are marketed for their accuracy, their award-winning designs and their simplicity.

“From the beginning, advertisements for home pregnancy tests focused less on how they worked and more on what they offered — privacy, autonomy, knowledge of one’s own body,” Cari Romm wrote in a 2015 article in The Atlantic.

Which was, and is, the case for most, but certainly not all: Blind or visually impaired women almost always have to rely on others — sighted partners, friends, health care workers or strangers — to tell them their results, which can feel intrusive, belittling and uncomfortable.

“You really don’t have privacy at all as far as your body and sexuality,” said Juanita Herrera, 29, a blind training and development director at a tech company and single mother of a 5-month-old daughter. “Nothing is private.”

For the blind, apps eventually came along to bridge the gap, including Aria, a subscription-based service that connects visually impaired people with professional agents to provide visual assistance for various tasks — which could include the reading of pregnancy tests.

Another, Be My Eyes, partnered with Clearblue in October 2019 to connect professional agents to blind and visually impaired women using Clearblue’s products. Some women have relied on Seeing AI, which uses a smartphone camera to upload an image of an object and audibly describe it.

But the apps fail to tackle the heart of the issue: inclusive design.

That began to change, finally, in October when the Royal National Institute of Blind People, a charity in the United Kingdom, unveiled a prototype of a tactile at-home pregnancy test to raise awareness around inclusivity, parity and privacy.

“Inclusive design is important, particularly for the pregnancy test, because it’s such a poignant thing,” said Anna Tylor, the institute’s chairperson. “All of this sits within an intersection of sight loss, the right to privacy and how we judge women.”

Created by Josh Wasserman, an independent designer, the prototype is larger than the conventional urine-stick test and features bright yellow and pink panels so women with low vision can differentiate the top from the bottom. It works with the same existing technology sensors but relays information through tactile bumps. A small bump on the underside of the stick confirms that the urine has been absorbed by the pad and a separate set of bumps on the stick’s top side raises to indicate a positive result.

Josh Wasserman’s pregnancy test is brightly colored with raised bumps to indicate the test is working and for a positive result.The&Partnership

“I think it’s really important to push for the need of privacy with these products,” Mr. Wasserman said. “Knowing your result first is a right that everybody should have.”

When Tiffany Jesteadt, who was born blind because of a hereditary disorder, thought she might be pregnant, her husband, who is sighted, read her the results, not by choice but by necessity. It took away some of the “magic,” she said, explaining how shows and movies often depict wives surprising their husbands by cleverly hiding the positive pregnancy test.

“Getting to tell your husband — it is cultural,” said Ms. Jesteadt, 33, an organization development practitioner for the U.S. Marine Corps. While she and her husband tell each other everything, she said, disclosing information about her own body “is something that a woman should be able to control.”

Making the test experience more private also helps reduce the judgment many blind women say they experience on their paths to motherhood.

Josselyn Sosa was a college senior when she found out she was pregnant. At first, Ms. Sosa turned to a trusted friend who accompanied her to buy a test in a CVS store that she then took in its bathroom. Her friend also had impaired vision and couldn’t read the results either. So Ms. Sosa visited the health center at her small college in Texas, where a doctor told her, “I am so sorry, but it came back positive.”

“She felt she could provide her opinion,” said Ms. Sosa, 28, who was born with congenital glaucoma in her right eye and lost sight in her left eye because of retinal detachment when she was 12. She had been dating her now-husband, who is also blind, for only a short time. “I just wanted to get out to deal with it by myself,” she said. “It was such a big deal for me.”

Ms. Sosa went on to deliver a baby girl, now 4 years old. She graduated this month with a degree in hospitality administration and she’s pregnant with her second child due in June.

For her current pregnancy, Ms. Sosa used the Be My Eyes app. It was a better experience, but she still felt she was giving up her privacy, she said.

“If companies would start designing for disability in mind first, it would help out universally,” she said.

Developed as part of its Design for Everyone campaign, the Royal National Institute of Blind People’s prototype aimed to demonstrate that inclusivity is achievable if companies take a broad-based approach from the outset. The institute has been in touch with some manufacturers and hopes that others see the potential of a product that caters to more than just a narrow population, Ms. Tylor said.

“This isn’t an alternative or some clunky solution for a very small number of people,” Ms. Tylor said. “It could work for all women.”

Write to us at inherwords@nytimes.com.

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In Her Words is edited by Francesca Donner. Our art director is Catherine Gilmore-Barnes, and our photo editor is Sandra Stevenson.

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