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Opinion: I've been accused of faking my visual impairment - this got worse during Covid

Gillian Stafford outlines what life has been like as a person battling blindness and the further challenges she’s faced during the pandemic.

Gillian Stafford

ON A SUNNY day in the first lockdown, I remember going to my local Lidl to do the weekly grocery shop. As I was standing in the queue, I heard a voice shout “Get back on the mark – you are too close to me”.  I thought the person must have been speaking to someone else. 

They then came over and demanded to know why I could not see the mark on the floor. I tried to explain that I had a visual impairment. The woman just responded by saying that having a visual impairment was not an excuse to get out of abiding by Covid rules! Of course, I just hadn’t seen the markings.

Another time, I was in my local post office and, as I wasn’t standing exactly on the designated spot, a man physically pushed me onto it. I asked what was he doing and he said he was putting me in the circle where I needed to stand as I was too close to the person in front of me. Again, I said I had a visual impairment. I was even holding my cane. But he said he had never seen one of those before!

So, it seems for the first person, my visual impairment didn’t align with their views of disability and, for the second person, it would seem that people with a visual impairment are confined to those using a guide dog.

These experiences did leave a mark on me and I found it very hard to go shopping on my own afterwards. 

Diagnosis

My story of sight loss begins at the age of 17. The red flags were raised when my older sister went to see an optician for contact lenses so that she could play badminton. She was subsequently diagnosed with retinitis pigmentosa, the name for a group of eye disorders that cause vision loss. It would mean that the entire family would need to have our sight tested. 

And, so, it was that I was diagnosed with the same condition. It came as a shock, but also somewhat as a relief. I hadn’t been imagining things after all.  

You see, at the time, I was having problems reading small print and looking at the board in school. I was finding it difficult to see in the dark and, if I was going doing a steep hill, or an escalator, I would feel like I was falling into a black hole.

I was told that these problems were due to short-sightedness and I was having to change my glasses frequently. However, it turns out they were all part of life with retinitis pigmentosa. 

I did go on to finish my Leaving Cert and followed that up with a Degree in Social Policy and Sociology at Maynooth University. I was doing my Masters in Social Policy and Social Rights last year when Covid struck and I found out that my college campus was being shut down. I remember the anxiety I felt and that I wouldn’t be able to do my course on my own at home. 

Additional challenges

Technology can be frustrating and there were many times when I wanted to throw my computer out the window. But I persevered, and thanks to great support from my department, and my disability officer, I got through it and graduated last September.

Apart from having to live differently due to Covid, in the past 18 months my sight has also deteriorated more significantly than I would have expected. Lockdown was challenging enough. Add to that my additional sight loss and it was all taking a heavy mental toll. 

I used to be independent and be able to go for a walk on my own. Now, all I have left is my central vision. I have to rely on my mam to go walking with me as I find that I don’t see someone until they are right in front of me. 

Sometimes people walk in threes and fours and they expect you to move into single file which is dangerous for me as I have to un-link arms with my mam and may not see if there is a slope or uneven path.

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Since the reopening of society, and with outdoor dining becoming more common, that has thrown up new challenges too. I had an incident where I caught my cane in someone’s shopping bag and nearly fell over them sitting at an outdoor table. That was a shock for both of us! Another time I was walking along and two people came out of a premises, didn’t see me coming, and this time I did fall over. 

I have been accused of faking my disability. People sometimes think that I can see more than I can. Maybe they think I am doing it to get more assistance.

However, there is a spectrum for vision loss. You may have some sight but need tools to be able to get around safely. I have now started the process to apply for a guide dog as, unfortunately, I don’t feel safe using the cane anymore.

Sometimes people overlook my sight loss which can be an issue. Other times people can’t see past it. It can be a lose-lose situation. But I try not to let it get me down. 

Gillian Stafford lives in Trim, Co Meath and is an ambassador for Fighting Blindness’ Retina 2021 Public Engagement Day, which takes place on Saturday 6 November. Aimed at people with sight loss and their families, the conference features motivational talks and updates on the latest treatment advances. Registration is free at www.fightingblindness.ie.

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Gillian Stafford

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