What is Becca Meyers’ disability? Usher syndrome symptoms explained

Bruno Cooke July 20, 2021
Photo by Stacy Revere/Getty Images

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Deaf-blind Paralympian Becca Meyers has withdrawn from the 2020 Tokyo Paralympics, citing a lack of accommodation to her needs – she says she was “told to navigate Tokyo alone”. So, what are the regular symptoms of Becca Meyers’ disability, Usher syndrome?

What are Usher syndrome’s symptoms?

The National Organization for Rare Disorders (NORD) describes Usher syndrome as a rare genetic disorder primarily characterised by deafness and loss of vision.

The syndrome inhibits the ability of the inner ear and auditory nerve to transmit sound to the brain, leading to sensorineural hearing loss.

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Photo by Nicholas Hunt/Getty Images for Women’s Sports Foundation

Retinitis pigmentosa, a disorder affecting the retina (at the back of the eye), often accompanies this. The result is that sufferers experience both deafness and (at least peripheral) blindness.

Those with Usher syndrome typically retain central vision into adulthood. But their lack of hearing impairs their ability to walk – many do not learn to walk until they are 18 months old, or later.

What is the cause of Usher syndrome?

Usher syndrome comes in three types – 1, 2 and 3. 1 is the most severe, and comes with almost total deafness at birth. Becca was diagnosed with Usher syndrome type 1 (USH1) when she was four years old.

It is an inherited syndrome caused by genetic mutations.

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Photo by Stacy Revere/Getty Images

Usher syndrome can affect males and females, and parents can be carriers without experiencing symptoms. This means it is recessive, rather than dominant.

Why did Becca Meyers’ Usher syndrome cause her to withdraw from the Paralympics?

Becca Meyers is a six-time Paralympic medallist. Other deaf-blind Paralympians include shot-putter Alice Eaddy and speed skater Kevin Frost. Restrictions on the presence of non-athletes at this year’s games, however – an upshot of the ongoing covid-19 pandemic – meant that Becca would have had to go alone.

Her mother, Maria Meyers, told the Washington Post that she had given her “entire life” for this. “It’s unacceptable. It’s heartbreaking.” 

“She is terrified to go [by herself]”, she continued. “And I mean terrified – like, rolled up in a ball, shaking.”

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Her family apparently appealed to members of the US government and officials within the International Olympic and Paralympic Committees, but to no avail. Despite Becca Meyers’ disability, she would not be able to bring her support person with her.

“When we had a meeting in May to discuss this,” Becca Meyers told the Post, “I presented my case and I said, ‘Okay, how do we make this work?’ They talked right over me. … They said, ‘This is what we have; you’re going to have to deal with it.’”

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Bruno is a postgraduate student studying global journalism, with research interests in the intersection of the media, storytelling, culture and politics. His articles have appeared in Groundviews, Packs Light and Forge Press, and most are readable on Medium or onurbicycle.com. He is a Student Ambassador for Tortoise Media, a big fan of Freddie Mercury and a novelist – his debut novel, Reveries, is available on Amazon.