The pandemic has made life extra difficult for those of us with sight loss
With touch now off limits, people with sight loss are unable to venture out alone and have lost a lot of their independence, Áine Mae Crowley tells
Trestrictions required by the government in response to Covid-19 are hard for all, but they are particularly trying for certain sections of the community, one being the 220,000 people living with sight loss in Ireland. Not only do they not have the same access to all of the virtual distractions the rest of us are relying on, they, like everyone else, have been told to avoid touching things. And when you don’t have the power of sight, being able to feel your way around or decipher what you are touching is vital.
Áine Mae Crowley lost her eyesight at
25 as a result of diabetic retinopathy. The Clare woman, who was diagnosed with Type 1 Diabetes as a child, underwent several surgeries in the past decade, but nothing was successful to restore her sight.
She says her life was turned upside down when she became blind and although she had come to terms with it in recent years, further complications to her health have added to the total sense of vulnerability she feels during the coronavirus pandemic.
“Almost overnight I had no sight, I stopped working and I remember sitting at home without anything to fall back on. I was unable to work my phone, make a cup of tea, leave the house on my own or hop into the car to visit my mum,” recalls the 38-year-old. “It was such a difficult thing to come to terms with.”
After a while, Áine Mae, who is married to Tommy, began a computer training course on software designed for people with sight loss. She underwent a radio programming course and got a job in local radio where she worked for nine years as a producer, presenter and eventually became manager.
“But not long after appearing on the Late Late Show in 2015 as a Fighting Blindness ambassador, she suffered kidney failure and went on dialysis until she had a kidney and pancreas transplant in 2017.
Although she is now past the recovery stage, the coronavirus crisis has meant that she is confined to her home and is no longer able to enjoy any independence outside of her own home.
“Generally I would manage my day-to-day living by sticking to routine and would try to get out of the house as much as possible,” she says. “I have always been a bit of a gym bunny and particularly after the transplant, keeping moving was vital to prevent clots, so I went a lot. In fact, for many years I have tried not to prevent myself from doing anything unless I really couldn’t do it. But now this has changed.
‘But now due to the current pandemic, things are very difficult, not just for me but for anyone with a disability who is confined to the house and must wait for someone to help or deliver what they need to them’
“Obviously I can’t go to the gym and before the virus happened, I was going to get a guide dog, but that has been put on hold for the foreseeable future. I had also been learning to use a cane, which is difficult, but with the help of technology I am managing as my husband takes a WhatsApp video of me using it outside and I send it off to the NCBI who will have a look and give me advice on what to do. Aside from that, I don’t really get out much and when I do, I need to link on to someone or hold my husband’s hand as I can’t touch anything, so need to be guided.”
Following her transplant, Áine Mae, gave up her role in radio and after recovery, she used her voice in another way, but being housebound during the crisis has also put a stop to that.
“After my transplant I decided to step down from radio and move into motivational speaking,” she says. “It helped me to prove that you don’t need to have sight to have vision as anyone is capable of anything if they really believe they can achieve.
“But now, due to the current pandemic, things are very difficult, not just for me but for anyone with a disability who is confined to the house and must wait for someone to help or deliver what they need to them. I know everyone is in the same position at the moment, but most people can watch something on TV or some other format and thosaae who are fully able, would be surprised to know how restricted many people actually are.”
Although some days have been hard, Áine Mae says she is keeping positive by trying to establish a new routine and use her brain as much as possible.
“I will admit that I have hit a wall a few times recently as I have been used to a strict routine, which some people might see as a bit OCD, but it’s vital for me to have my day and my space organised,” she says. “I love being out and I’ve found the past few weeks very restrictive and my mood has dipped on many occasions, and sometimes I find that I go two steps forward and then take three steps backwards.
“But technology has been a huge help as I am trying to keep my mind active by getting stuck into something new — I’m currently trying to brush up on my Spanish,” she says. “Seeing AI technology is a great tool and can scan barcodes or handwriting, and even if someone sends me a photo it can describe what they look like and if it is someone in my contact list it will tell me who they are.
“My advice for anyone with sight loss who is struggling right now, would be to try and stay positive. We have all trained so hard to become socially independent, so the mental health aspect is very difficult, particularly for those who don’t have light perception as their world is in complete darkness. So now, more than ever, technology is our friend and we must keep our minds active and focus on getting through this.”
Peter O’Toole of fightingblindness.ie agrees and says anxiety and loneliness can be very difficult for people with sight loss during the Covid-19 crisis.
“People living with sight loss navigate their entire lives through touch and now they don’t even have that,” he says. “Many rely exclusively on public transport to make essential trips such as grocery shopping and hospital appointments. And now, if they do venture to local shops on foot, many will be unable to navigate the social distancing measures in place — adding an extra layer of risk for them. In addition, for those who need assistance with guiding, this option is no longer viable. People living with sight loss have to rely on friends and family for help during this time — it has a huge impact on their day-to-day life and any independence they did enjoy.
“A lot of our service users are already experiencing high levels of anxiety and loneliness due to their eye conditions and Covid-19 has greatly enhanced those feelings. Isolation is a big issue for many and we’re seeing an increase in demand for our online peer support services as people want to connect with others going through the same experience.”
The Senior Counselling Manager says the virus has also created physical problems for people with impaired vision, so he would encourage the public to try and help in any way they can.
“They no longer feel safe to go outside for exercise and are cooped up in their homes and this is detrimental for both their physical and mental health,” he says. “For many, continuation of treatment, scheduled procedures and even just re-stocking prescribed medication has become considerably impacted, which can often further increase their own emotional health struggles.
“So if you or somebody you know is living with sight loss, get in touch and connect with our peer support network as our members find the regular contact invaluable. We’re also sharing accessible information and resources from official bodies across our social media channels.
“And as the majority of our funding relies on the goodwill of the Irish public, we greatly welcome additional support at this difficult time. Every donation, small or big, will help the charity keep their doors open and continue to support people living with sight loss in Ireland. You can donate online at fightingblindness.ie/donate.