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Carol Brill Rare Diseases Ireland
usher syndrome

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

Golf champion Carol Brill said daily tasks can be “very, very stressful” for people with sight and hearing loss.

MOST OF OUR lives have changed during the Covid-19 pandemic, but some people have been affected more than others.

The restrictions put in place in recent months to help prevent the spread of the virus have made daily life particularly difficult for people living with sight and/or hearing loss.

Carol Brill, a golf champion based in Dublin, has Usher syndrome, a rare genetic disorder that has resulted in severe hearing loss and deteriorating eyesight.

She said simple things most people take for granted, like going for a walk or getting groceries, can be ”very, very stressful” for her. 

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.

“Everyone is just focused on surviving right now, they’re thinking of themselves and their family unit,” Carol said.

She understands why this is the case but called on people to have a “wider perspective” and be conscious that others may have additional needs – even if it’s not obvious from just looking at them. 

Carol told us she has always had to communicate that she has hearing and sight loss as it’s “an invisible condition” but she has been “more conscious” of this during the pandemic. 

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. 

“My hearing and sight loss isn’t exactly visible to the person. We need to become a little bit more aware that other people may have extra needs.”

Carol said regular walks with a friend have been “a lifeline” in recent weeks, but this “simple pleasure” has at times been “blighted by social judgement”.

The pair link arms while walking and Carol  – something a number of passersby have commented on. “I feel as though I’m being judged, that people presume I’m doing something I shouldn’t be.”

‘You’re breaking the rules’ 

Carol is the current Irish Blind Open Ladies Champion and has recently been able to start playing golf again. She’s preparing for a tournament in Scotland this September and said getting back to her local course has been “very good” for her mental health and wellbeing. 

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.

“There have been a few comments. ‘Is this okay?’, ‘Have you got permission to do this?’, ‘Are you legally allowed to walk with somebody?’ ‘Oh, you’re breaking the rules.’,” Carol noted. 

She added that this can be upsetting as people have made remarks like this “without any regard for my needs as a person with a rare disease”. 

“Short of walking around with a plaque saying ‘I have a disability’, what am I supposed to do? I feel as though I shouldn’t have to justify myself,” she said. 

“Be aware and be kind, don’t judge people,” she added. 

‘Invisible’ people

Carol said people with rare conditions are essentially ”invisible” and “very marginalised” in society, but she doesn’t like the term “vulnerable” applied to herself. 

“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’s mother Ann broke a bone in her back about five months ago after injuring herself while pulling a heavy bin.

“She’s walking again but it took a long time, I have to keep my eye on her,” Carol said.

“She’s doing really well now, she’s itching to get out, she misses her social life too.”

Unable to lip read 

Carol said another issue the pandemic has raised for those with hearing loss is trying to understand a person who is wearing a face mask as they can no longer lip read. 

How do I hear someone talking through a face mask? If I’m trying to lip read, how do I do this?

Carol said she doesn’t want a lot but is “asking for society to remember that people like me exist”.  She said an alternative to cloth masks would be if people wore clear visors or masks with a clear panel at the mouth. 

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 has been ordering groceries from a local supermarket but would love if stores could provide a personal shopper for people like her who would like to do their shopping themselves but need help making sure other people don’t get too close to them.

She told us she misses simple things like picking up vegetables before choosing which ones she wants to buy. 

“We live as normally as we can in this house,” she said, adding ”but I’m having to adapt very quickly”.

1. Carol Brill Carol Brill Rare Diseases Ireland Rare Diseases Ireland

People with sight loss often rely on touch to help them navigate – which is particularly difficult at a time when we’re being advised to avoid touching surfaces as much as possible. ”You might touch something and not know it’s infected, we’re fairly tactile in having to navigate,” Carol noted.

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. 

“We still have to think about people with disabilities. We have a right to exist and we have a right to live.” 

‘My heart is breaking’ 

Carol said, as well as the day-to-day issues the pandemic has raised, she also worries about the long-term impact of the crisis. ”My heart is breaking, I’m losing hope that my bucket list items won’t be fulfilled.”

Carol said we’re “on the cusp” of finding treatment and cures for conditions such as hers but she’s afraid the money for research will “dry up” as budgets are redirected towards responding to Covid-19. ”It’s not a nice place to be right now,” she said. 

When asked about the issues people with sight and hearing loss are facing during the pandemic, a spokesperson said the Department of Health “recognises the impact of Covid-19 on all members of society and the need for wide dissemination of the latest public health advice as we work towards the phased reopening of society and business”.

“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.

“For example, the daily NPHET press briefings include live ISL interpretation, as do those held in the Department of the Taoiseach.”

The spokesperson added that Health Minister Simon Harris is due to meet with representatives from the National Council for the Blind Ireland (NCBI) tomorrow to discuss their concerns.

Rare diseases 

Rare Diseases Ireland (RDI) has called on the government to ensure the provision of healthcare services for people with rare diseases, noting: “in our collective efforts to combat one disease, Covid-19, it is important that other diseases are not left behind”.

Almost three-quarters of respondents (73%) 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.

Of the 176 people surveyed, more than half (53%) have had scheduled medical appointments cancelled, while a quarter (26%) indicated that they have encountered difficulty accessing medicines and medical supplies. Almost two-thirds (62%) believe that Covid-19 is having a negative impact on their mental health.

When asked about the situation, a spokesperson said the Department of Health is “aware of the concerns” of people with rare diseases and their families and “anxious to continue its engagement with the Rare Disease Taskforce (the main umbrella group for rare disease patient groups)”.

“The ongoing implementation of the Rare Disease Plan, which was launched by the Minister for Health in 2014, also continues to be a priority. This plan sets out the policy framework for rare diseases.

“The scope of the plan is broad given that there are approximately 8,000 rare diseases affecting millions of EU citizens; and consequently, there can be a dearth of expertise and knowledge about some rare diseases, simply because they are so uncommon,” a statement noted. 

The spokesperson added that, during the pandemic, “protections for non-Covid care has been a key focus of acute hospital preparedness for Covid-19″. 

“Guidance on patient pathways to mitigate the risks associated with the delivery of non-covid care has been developed under the auspices of the Expert Advisory Subgroup of NPHET (EAG) and approved in principle by NPHET.

“This guidance aims to support the delivery of care in a way that is safe for both patients and healthcare workers. As the system works to deliver Covid and non-Covid care side by side over the coming weeks and months, the Department and the HSE will continue to work closely together to protect essential non-Covid acute care.”

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