'Should I wear a plaque saying I have a disability?': The reality of life with sight loss during a pandemic

Carol Brill Image: Rare Diseases Ireland Carol Brill Image: Rare Diseases Ireland MOST OF OUR lives have changed during the Covid-19 pandemic, but some people have been affected more than others.

Carol noted that practices like social distancing are more difficult for people with sight and hearing issues, meaning they have to rely on others to be responsible and give them space. She said people tend to give more space to a person using a wheelchair or walking with a guide dog, but noted that not all disabilities are visible.

Carol has played golf a few times, with the help of a guide, since restrictions started to ease slightly. She said some people have made comments about how closely her and her guide are standing together while going around the course. “I don’t like that term, maybe that’s just me being independent,” she said. “I look after my 81-year-old mother and my 12-year-old daughter, I am a very independent person.”

Carol said she understands why restrictions have been put in place during the pandemic, saying: “I don’t have a problem with them, but no consideration was given to people with rare diseases.” She added that businesses such as cafés which are planning to have more outdoor seating when they reopen need to factor in people with disabilities and not block pathways where people need to walk or get by in a wheelchair.

“In addition to the work of the NPHET Vulnerable Groups sub-group, we are working closely with the HSE on engagement with representative organisations to ensure that specific needs are met, and in the development of communications materials including in braille and ISL formats. Almost three-quarters of respondents to a survey carried out by RDI said they are concerned that their condition, or that of their loved ones, may deteriorate due to the impact of Covid-19 on their treatment and care.

A difficult and sensitive issue. Would Carol consider carrying a white stick (with red ring to indicate hearing loss)? Even if she doesn’t use it to feel her way, it will get the message across to others that she has a disability. And it’s a good tool to keep them at a distance!

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