World MS Day is on 30 May and this year to raise awareness, Irish Country Living (ICL) is shining a spotlight on accessibility.
Accessibility will affect most people at some stage, whether through ageing, disability, temporarily because of an injury or from trying to navigate with a pram or pushchair.
MS is the most common progressive neurological condition in young adults and more than 9,000 people live with the condition in Ireland.
ICL subeditor Rosie Farrell was diagnosed with MS at the age of 25 and experiences accessibility problems on a daily basis.
“You sometimes feel like a second-rate citizen when you live with a disability,” she says. “And why would we think otherwise, when there are barriers to inclusion at every turn? Leaving the house was a massive undertaking when I was using a wheelchair, so you can imagine how upsetting it is to make it that far and then find that people are illegally parked in the accessible spaces, or that the newly renovated restaurant in town isn’t accessible because they left a single step up to the entrance. It’s like the world is telling you to stay at home and not to bother leaving the house."
ICL subeditor Rosie Farrell and her dog Trixie. Rosie was diagnosed with MS in 2015. You can visit her blog at www.creativelyrewired.com
“I think that’s the hardest to accept,” adds Rosie. “There are so many shops in Irish towns where there’s just one tiny step at the entrance and the fix there to make it fully accessible is so minimal and affordable – essentially you’re talking a few shovels of concrete in some cases. To watch many of these buildings undergo extensive renovations but to then skip lining up a single step at the door with the pavement to make the place fully accessible is really upsetting.”
Greater access needed
The Irish Wheelchair Association (IWA) reported last year that 77% of people with physical disabilities have no access to public spaces.
“It’s astounding really,” Rosie says. “We talk about all the progress we’ve made in Ireland in the last few decades, but accessibility remains lightyears behind. Is it too much to ask that we have equal access to the world around us? Surely, in 2021, that should be a right and not a privilege.”
Declan Groeger lives in Cork with his wife. He has been using a wheelchair since 2004 and was initially diagnosed with MS in 1988. Though he says he struggled – first with his diagnosis at age 31, and then when he needed to start using assisted technology – he feels, by using a wheelchair, he is able to save valuable energy for tasks he truly enjoys.
Declan Groeger is a wheelchair user who writes about accessibility on his blog, Accessibility Matters
“I struggled with every aspect of assisted technology from the first time I used a walking stick,” he says. “For years, I refused to use one. I would use a big umbrella instead – even in the height of summer. I’d be using the umbrella and I could see people thinking: ‘Jeez, he’s a real pessimist expecting rain on the nicest of days.’”
Quality of life
“Then we [my wife and I] were 25 years married in 2004 and went to Rome [on holiday]. After the first day in Rome one of the other lads on our tour said: ‘Declan, would you ever rent a wheelchair?’ I agreed, so our tour guide delivered one to the hotel. When I got home, I rang my neurologist and said: ‘I want one.’”
Until then, Declan says he hadn’t realised how bad his mobility had gotten. While the wheelchair has simplified his life in many ways, it hasn’t been without its own complications.
“In shops, people won’t pick something up, something will fall on the ground – like a hanger – and I can’t roll over [whatever is on the floor],” he explains. “The bigger shops are better at leaving enough space between aisles but the small shops don’t have the same options (though I can well understand why).
Home comforts
Declan and his wife live in a renovated two-story house. They had an architect design the house specially to make it as accessible as possible. This includes making wider doorways, having a footpath line up with the front door and having the master bedroom and bath on the ground floor. They have living spaces on the second floor, so they have installed a stair-lift.
“Effectively, we future-proofed the house,” he says. “Nearly all new houses now are level with a footpath outside and I can use a walker or wheelchair to get in. In older houses, there isn’t much you can do to make it more accessible unless you make major structural changes. The big thing, if you want to make your home more accessible, is not to clutter. Pick things up off the floor.”
Declan feels we’ve come a long way, but believes Ireland will never be 100% accessible – especially for wheelchair users.
“The concept of universal design means if the most disabled person can get into a building, then anybody can. But the majority of our architects, builders and engineers aren’t designing around that [concept]. Even that half an inch to get up on to the footpath – that half an inch makes things very difficult. They’re well on the road, but it’s the tiniest of things they don’t think of.”
Hidden symptoms
People living with MS experience many different symptoms. The nature of the condition, in most cases, is relapsing and remitting, which means there are times when symptoms flare up followed by quieter periods.
MS symptoms can go largely unnoticed by the general public. This is the case for Christina McDonald who, after years of experiencing symptoms, was diagnosed with MS at the age of 26. Now in her early 30s, you can’t tell she has MS just by looking – and this, she says, can be part of the problem.
Christina McDonald lives with MS and writes for the MS and Me Blog for MS Ireland.
Christina McDonald lives with MS and writes for the MS and Me Blog for MS Ireland.
“I was diagnosed in 2016,” she says. “I had symptoms of a stroke; my left side was paralysed. They’re called tonic spasms and they’re actually more common in Parkinsons as opposed to MS. I’d be walking and I’d start jerking around, making movements or my left side wouldn’t work.
“I remember being on my lunch break at work and having a spasm and trying to ask for help,” she continues. “I was trying to say, ‘I need help’, but all that was coming out was a slur, so people kept walking by. I was in a state of panic, so I probably looked unapproachable. Then, a lovely man stopped and asked me if I needed help and it took me a long time to make him realise I needed to call my dad so he could come and get me.”
Urgency and incontinence
Christina says she was relieved when she was finally diagnosed with MS. Once given the right medication, her symptoms were well managed and she has been able to live a relatively normal life. However, she highlights something which is an issue for many people with mobility issues: urgency or incontinence problems and a lack of open public toilets. This has been especially problematic since the onset of the pandemic.
“With the pandemic, many shops won’t let you use their toilets – which I understand completely – but this is what I struggle with most,” she explains. “I live in Cavan, it’s 1.5 hours to Dublin for appointments and I need the toilet quite regularly. I have to be careful about how much I’m drinking, of course, but even if I don’t drink anything, I’ll need the toilet at some stage.
“I have been turned away, and I understand why, but it’s so embarrassing. I’m 31 now and I sometimes get dirty looks because I “look” fine – people would look at me and think, ‘You’re not disabled’, but they don’t know how many times I’ve wet myself. I’ve had a few accidents now where I was told I couldn’t use the toilet. Society doesn’t think about this aspect of accessibility.”
Not drunk
Christina has also felt judged in pubs and bars where staff have mistaken her difficulty walking with being intoxicated. During flare ups, she sometimes needs to use a walking stick, whereas other times she is able to walk without one. People can judge her in this situation, thinking, ‘Is she really sick or just looking for attention?’
“When I was first diagnosed, I wasn’t walking properly and I did look funny,” she admits. “People looked at me like I was crazy – they didn’t realise I had a medical condition. Last year, my legs were really bad and I had to use a walking stick. Maybe a month later I got better and didn’t need it anymore. I think people were questioning that.”
Her main takeaway from her experience is this: if you see someone struggling in public and they look afraid, ask them if they need help or offer to call an ambulance.
“If someone is lying on the ground or trying to get help, you should just stop and ask: ‘Are you OK?’ Maybe nine times out of 10 someone is drunk, but there is that chance that someone needs medical attention.”
Rosie and Christina both write for MS Ireland’s blog, MS and Me. You can also follow them on their own blogs; Rosie at creativelyrewired.com, Christina at whenyouresmyelin.com and Declan at able2access.wordpress.com.
World MS Day is on 30 May and this year to raise awareness, Irish Country Living (ICL) is shining a spotlight on accessibility.
Accessibility will affect most people at some stage, whether through ageing, disability, temporarily because of an injury or from trying to navigate with a pram or pushchair.
MS is the most common progressive neurological condition in young adults and more than 9,000 people live with the condition in Ireland.
ICL subeditor Rosie Farrell was diagnosed with MS at the age of 25 and experiences accessibility problems on a daily basis.
“You sometimes feel like a second-rate citizen when you live with a disability,” she says. “And why would we think otherwise, when there are barriers to inclusion at every turn? Leaving the house was a massive undertaking when I was using a wheelchair, so you can imagine how upsetting it is to make it that far and then find that people are illegally parked in the accessible spaces, or that the newly renovated restaurant in town isn’t accessible because they left a single step up to the entrance. It’s like the world is telling you to stay at home and not to bother leaving the house."
ICL subeditor Rosie Farrell and her dog Trixie. Rosie was diagnosed with MS in 2015. You can visit her blog at www.creativelyrewired.com
“I think that’s the hardest to accept,” adds Rosie. “There are so many shops in Irish towns where there’s just one tiny step at the entrance and the fix there to make it fully accessible is so minimal and affordable – essentially you’re talking a few shovels of concrete in some cases. To watch many of these buildings undergo extensive renovations but to then skip lining up a single step at the door with the pavement to make the place fully accessible is really upsetting.”
Greater access needed
The Irish Wheelchair Association (IWA) reported last year that 77% of people with physical disabilities have no access to public spaces.
“It’s astounding really,” Rosie says. “We talk about all the progress we’ve made in Ireland in the last few decades, but accessibility remains lightyears behind. Is it too much to ask that we have equal access to the world around us? Surely, in 2021, that should be a right and not a privilege.”
Declan Groeger lives in Cork with his wife. He has been using a wheelchair since 2004 and was initially diagnosed with MS in 1988. Though he says he struggled – first with his diagnosis at age 31, and then when he needed to start using assisted technology – he feels, by using a wheelchair, he is able to save valuable energy for tasks he truly enjoys.
Declan Groeger is a wheelchair user who writes about accessibility on his blog, Accessibility Matters
“I struggled with every aspect of assisted technology from the first time I used a walking stick,” he says. “For years, I refused to use one. I would use a big umbrella instead – even in the height of summer. I’d be using the umbrella and I could see people thinking: ‘Jeez, he’s a real pessimist expecting rain on the nicest of days.’”
Quality of life
“Then we [my wife and I] were 25 years married in 2004 and went to Rome [on holiday]. After the first day in Rome one of the other lads on our tour said: ‘Declan, would you ever rent a wheelchair?’ I agreed, so our tour guide delivered one to the hotel. When I got home, I rang my neurologist and said: ‘I want one.’”
Until then, Declan says he hadn’t realised how bad his mobility had gotten. While the wheelchair has simplified his life in many ways, it hasn’t been without its own complications.
“In shops, people won’t pick something up, something will fall on the ground – like a hanger – and I can’t roll over [whatever is on the floor],” he explains. “The bigger shops are better at leaving enough space between aisles but the small shops don’t have the same options (though I can well understand why).
Home comforts
Declan and his wife live in a renovated two-story house. They had an architect design the house specially to make it as accessible as possible. This includes making wider doorways, having a footpath line up with the front door and having the master bedroom and bath on the ground floor. They have living spaces on the second floor, so they have installed a stair-lift.
“Effectively, we future-proofed the house,” he says. “Nearly all new houses now are level with a footpath outside and I can use a walker or wheelchair to get in. In older houses, there isn’t much you can do to make it more accessible unless you make major structural changes. The big thing, if you want to make your home more accessible, is not to clutter. Pick things up off the floor.”
Declan feels we’ve come a long way, but believes Ireland will never be 100% accessible – especially for wheelchair users.
“The concept of universal design means if the most disabled person can get into a building, then anybody can. But the majority of our architects, builders and engineers aren’t designing around that [concept]. Even that half an inch to get up on to the footpath – that half an inch makes things very difficult. They’re well on the road, but it’s the tiniest of things they don’t think of.”
Hidden symptoms
People living with MS experience many different symptoms. The nature of the condition, in most cases, is relapsing and remitting, which means there are times when symptoms flare up followed by quieter periods.
MS symptoms can go largely unnoticed by the general public. This is the case for Christina McDonald who, after years of experiencing symptoms, was diagnosed with MS at the age of 26. Now in her early 30s, you can’t tell she has MS just by looking – and this, she says, can be part of the problem.
Christina McDonald lives with MS and writes for the MS and Me Blog for MS Ireland.
Christina McDonald lives with MS and writes for the MS and Me Blog for MS Ireland.
“I was diagnosed in 2016,” she says. “I had symptoms of a stroke; my left side was paralysed. They’re called tonic spasms and they’re actually more common in Parkinsons as opposed to MS. I’d be walking and I’d start jerking around, making movements or my left side wouldn’t work.
“I remember being on my lunch break at work and having a spasm and trying to ask for help,” she continues. “I was trying to say, ‘I need help’, but all that was coming out was a slur, so people kept walking by. I was in a state of panic, so I probably looked unapproachable. Then, a lovely man stopped and asked me if I needed help and it took me a long time to make him realise I needed to call my dad so he could come and get me.”
Urgency and incontinence
Christina says she was relieved when she was finally diagnosed with MS. Once given the right medication, her symptoms were well managed and she has been able to live a relatively normal life. However, she highlights something which is an issue for many people with mobility issues: urgency or incontinence problems and a lack of open public toilets. This has been especially problematic since the onset of the pandemic.
“With the pandemic, many shops won’t let you use their toilets – which I understand completely – but this is what I struggle with most,” she explains. “I live in Cavan, it’s 1.5 hours to Dublin for appointments and I need the toilet quite regularly. I have to be careful about how much I’m drinking, of course, but even if I don’t drink anything, I’ll need the toilet at some stage.
“I have been turned away, and I understand why, but it’s so embarrassing. I’m 31 now and I sometimes get dirty looks because I “look” fine – people would look at me and think, ‘You’re not disabled’, but they don’t know how many times I’ve wet myself. I’ve had a few accidents now where I was told I couldn’t use the toilet. Society doesn’t think about this aspect of accessibility.”
Not drunk
Christina has also felt judged in pubs and bars where staff have mistaken her difficulty walking with being intoxicated. During flare ups, she sometimes needs to use a walking stick, whereas other times she is able to walk without one. People can judge her in this situation, thinking, ‘Is she really sick or just looking for attention?’
“When I was first diagnosed, I wasn’t walking properly and I did look funny,” she admits. “People looked at me like I was crazy – they didn’t realise I had a medical condition. Last year, my legs were really bad and I had to use a walking stick. Maybe a month later I got better and didn’t need it anymore. I think people were questioning that.”
Her main takeaway from her experience is this: if you see someone struggling in public and they look afraid, ask them if they need help or offer to call an ambulance.
“If someone is lying on the ground or trying to get help, you should just stop and ask: ‘Are you OK?’ Maybe nine times out of 10 someone is drunk, but there is that chance that someone needs medical attention.”
Rosie and Christina both write for MS Ireland’s blog, MS and Me. You can also follow them on their own blogs; Rosie at creativelyrewired.com, Christina at whenyouresmyelin.com and Declan at able2access.wordpress.com.
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