'All the small things' blocking access for people with disabilities
Elena Canty at her specially designed dresser at her home in Ballyvolane, Cork. She says 'all the small things' about trying to navigate a world not designed with her in mind can be disheartening. Picture: Eddie O'Hare
In recent years, there have been major moves towards making Ireland more accessible and inclusive for more than 643,000 people here living with a disability.
The Equal Status Acts 2000 to 2004 outlawed discrimination on the basis of disability.
The Disability Act 2005 put the onus on public bodies to make buildings and services as accessible as possible.
The 2010 Building Regulations provide guidance and specifications around how designs should be made accessible.
The UN Convention on the Rights of Persons with Disabilities, ratified by Ireland in 2018, ensures the rights of all people with disabilities to equal access in all areas of life.
However, while these are landmarks, people with disabilities and advocates say they are riddled with caveats and qualifications.
Phrases like “as far as practicable” and “having regard to resources” temper the aspirations of these laws to achieve true equality, and instead draw the baseline, the minimum requirements of accessibility.
And there is only so far these baselines can reach: The Disability Act only mandates accessibility for public buildings and services; the 2010 Building Regulations don’t apply to pre-existing buildings, and accessibility requirements reduce dramatically for homes.
Ireland chose not to ratify an optional protocol to the UN convention, which would have provided a mechanism for people to challenge when their rights aren’t being upheld.
The 2005 Disability Act introduced a key concept that goes beyond minimum accessibility requirements, the concept of universal design.
Universal design is a philosophy of design, which envisages that design of a building, product, or service from the outset and throughout should meet the needs of all people who wish to use it, regardless of age, size, ability, or disability.
The principles of good universal design include that something can be used equally or equitably by people with diverse abilities, is easy to understand or navigate, requires low physical effort, and can be approached, reached, and used by people regardless of their size or mobility.
The 2005 Act established a Centre for Excellence in Universal Design to research the gold standards of universal design, and promote them to designers, students, and the general public.
The centre can recommend guidelines for universal design, encourage compliance, and promote public awareness of the difficulties encountered by people in relation to the environment — but it is up to everyone in society to adopt the spirit and philosophy of universal design into building the world around us.
“Universal design is a very powerful concept,” says Aisling Glynn, a board member of the National Disability Authority (NDA).
A wheelchair user herself since she developed a neuromuscular condition in her teens, she said to this day, the physical environment “can be a real barrier”.
“I think if we take universal design on board and apply it to our environment, it'll really benefit not only people with disabilities, but everybody else in society as well,” Ms Glynn said.
“There's a tendency for people to look at people with disabilities as a kind of ‘them and us’, but it’s really about all of us.
"Most people during their lifetime will be sick, or break a leg, or acquire a disability, or else it’ll be your brother, your sister, your mother, your father.
"We need to think about how we would like to be treated ourselves, and those we love to be treated,” she added.
According to the NDA, most people who have a disability are not born with it, but acquire it later in life, and disability increases sharply with age.
Three out of every five people aged over 60 have at least one chronic condition, and the majority of people over 80 have at least one disability.
The 2016 census recorded 13.5% of the population, or one in seven people, as having a disability. This is projected to rise by 20% by 2030.
With a growing and ageing population, the number of people living with physical, sensory, or intellectual impairments, and living for longer, is increasing — while the number of younger people available to assist and care for them is expected to decrease considerably.
The Centre for Excellence emphasises that universal design is the key to people of all abilities living as independently as possible.
Universal design is a philosophy that seeks to go beyond just meeting the bare minimum of accessibility required by building regulations.
It is an approach to design that considers the varied abilities of users from the outset and throughout.
When the bare minimum of accessible design is the standard, rather than the spirit of universal design, it can leave many people with disabilities shut out.
The 2016 Census showed that six in 10 people with physical disabilities in Ireland said it affected them participating in leisure and other activities; half said they experienced difficulty even going outside alone; only a third are employed.
As recently as 2020, a survey by the Irish Wheelchair Association found that amongst those with physical disabilities, 77% have poor or no access to public spaces and amenities; 66% report difficulty accessing public buildings, and 68% experience inadequate toilets, lifts, and emergency exits in public spaces.
As Elena Canty will tell you, “all the small things” about trying to navigate a world not designed with her in mind can be disheartening.
Now 32, Ms Canty has been in a wheelchair most of her life due to a brittle bone disease.
“I feel like I'm constantly trying to find innovative ways to adapt to the environment around me, and I shouldn't have to,” she says.
“I go up a dropped kerb onto a path, drive along to the end of the path, and find there’s no dropped ramp on the other end.
"A bar or a restaurant might have steps up to the entrance. I have to rely on a passer by to open the door for me to enter a building,” she said.
“I was only talking to a friend the other day about places in the city, and she said ‘upstairs there is lovely’. I told her I’d never been there because there’s no lift. She said ‘oh my God are you serious, I never realised’.
"When you're in a wheelchair, you view the world from a different lens,” she added.
Ms Canty said her ultimate dream would be to access the whole world, without any barriers whatsoever.
“Unfortunately, that's not attainable right now, and might not be in my lifetime. It always comes down to whether people are willing to invest their own capital to make their businesses accessible, and some places just aren't really,” she said.
Michael Hennessy Cullen became a wheelchair user following an accident 17 years ago, when he was aged 19.
Now he and his wife Leona Tuck go by the username 'The Struggle is Wheel' on social media, as they highlight the everyday obstacles of living in rural Wexford.
“A big problem living in rural Ireland is the older buildings are just not accessible,” said Michael.
Current building regulations require that new builds and extensions to buildings other than dwellings are accessible and usable by people with disabilities.
However, building regulations do not apply to buildings constructed before 1992.
For existing buildings, and “especially” those of architectural or historical interest, there is no obligation to improve accessibility, as it may be “unduly restrictive or impracticable”.
“Our nearest towns would be either Wexford town or New Ross, old medieval towns, with the likes of medical practices and banks in protected buildings, so they don’t even have to comply with regulations around accessibility,” Mr Hennessy Cullen said.
“There’s a bank near us with an electric door with a big sign flashing a wheelchair symbol on it, but you can’t get to the door to open it because there’s two steps up to it.
"I don’t even take great offence to that, it just shows people are not thinking about it, because it just doesn’t affect them,” he added.
Currently, the regulations around building homes have a minimum accessibility requirement that houses are visitable, but not liveable, for wheelchair users.
“Basically, that means that the front doors are wide enough, entrances into them are on the flat, you'd be able to enter one of the rooms downstairs, and that there's a downstairs bathroom,” said Joan Carthy, national advocacy manager with the Irish Wheelchair Association (IWA).
“But wheelchair users can't actually live in any of those houses if there are two storeys, and even if they're bungalows, it doesn't necessarily mean that any of the bathrooms are fully accessible, or that you would be able to get in and around or actually use the kitchen,” she added.
According to the IWA , almost 1,500 people with physical disabilities are currently on the local authority-approved social housing list, some for over seven years, while those in a position to buy or rent can’t find anything available on the private market.
The IWA is currently leading a campaign, 'Think Housing, Build Accessible', calling on the government to review building regulations to ensure higher wheelchair accessibility, and to ensure that 7% of all new builds incorporate universal design, and are fully accessible and liveable for wheelchair users.
The first principle of universal design is equitable use. Using a service should be identical for all users wherever possible, or at least equitable, and should avoid segregating or stigmatising users.
While steps have been taken to improve accessibility of transport in Ireland, and more modern infrastructures like the Luas incorporate more universally designed features, trying to catch a bus or a train as a person with a disability is a million miles from the experience of those without one.
Dublin Bus vehicles are low floor and wheelchair accessible, as are Bus Éireann’s urban services — however there is only one segregated space, for one wheelchair user — or child's buggy — at a time.
Spaces on Bus Éireann’s Regional, Commuter, and Expressway services are 'limited' and require 24 hours notice to reserve.
Other providers such as Go-Ahead and Aircoach also provide accessible transport, again for one wheelchair user at a time.
Trains and stations across the country are generally accessible, although 24-hour notice is required to arrange staff to put a ramp in place to board and disembark, and not infrequently out of order station lifts can scupper travel plans.
Bernard Mulvaney is one half of Access for All, a campaign that highlights the discrimination people with disabilities face every day, particularly in accessing transport.
Mr Mulvaney’s daughter was born with Spina Bifida in 2010, and he met his campaign partner Sean O’Kelly through the Irish disabled community.
Their advocacy partnership kicked off when Mr O’Kelly, who is in a wheelchair, was left stranded at Clontarf DART station because of a lift that was out of order.
“We thought the DART was the perfect example to start with. It’s a small, profitable piece of transport that goes from point A to point B.
"There’s about 32 stations, and at any one time, eight or nine of them could have no lifts working. Sometimes more like 11 or 12," Mr Mulvaney said.
"So we took it upon ourselves to highlight that if we can’t even get that working as fully accessible on any given day, what hope is there for the rest of our society when it comes to people with disabilities,” said Mr Mulvaney.
Since launching in 2019, Access for All has become a major voice in the discussion around accessibility and universal design, or lack thereof, in particular on public transport.
“People are often aghast by the fact that if you are in a wheelchair, you have to give 24 hours notice if you want to travel via bus outside Dublin," Mr Mulvaney said.
"The same for the train to book a ramp, you have to get 24 hours notice. You're effectively saying to people with disabilities that unless they can plan their life 24 hours ahead, that they don't matter,” said Mr Mulvaney.
“Only one wheelchair user can travel on a bus at a time. Sean is getting married this year to Megan who is also a wheelchair user.
"They can never travel on the bus together as a couple, because only one wheelchair is allowed.”
Aoife McNicholl is 27 and currently completing her PhD in DCU, and has used a wheelchair since the age of five due to her spinal muscular atrophy.
“Things have improved over recent years … but in terms of accessibility, the big one I would say is transport, and the need to improve access to transport in Ireland,” Ms McNicholl said.
“I’ve encountered a lot of difficulties to be honest over the years. Arriving at train stations and lifts being out of order, and being stuck and having to wait for another train to bring you to another station.
"In terms of buses, ramps not working or the fact that there's only one space allocated to a wheelchair user,” she added.
Ms McNicholl says having to book buses and trains so far in advance is “crazy”.
“It’s kind of crazy, because it just takes away your freedom and spontaneity,” Ms McNicholl said.
"You have to be really regimented and structured around what you're going to do and what time you're going to do it.
"It would be brilliant if they could introduce new trains that would be designed similar to the Luas, that you could just drive on or drove off without the need for ramps,” she said.
While the universal design of physical structures can quite literally open doors for people with disabilities, it starts with a shift in mindset and attitude.
Alan Fay is 25, and his cerebral palsy has meant he has used a wheelchair most of his life, and needs 24 hour care assistance — but he says that his disability is not the problem.
“Society disables me. I’ve had people come up to me and say ‘ah god help ya’ or ‘god love ya’, and there’s nothing wrong with me," Mr Fay said.
"I’m like you, I’m just in a wheelchair. I am disabled, but society is more the determining factor in my life, because if society was a better place I’d still have my disability but my life would be a lot easier.”
Mr Fay said it’s a daily, constant push to be integrated into society, and considered when designing the environment.
“Ireland is behind on a lot of things relating to disability. I think the government think because they’re in wheelchairs or not able to do things for themselves, let’s forget about them. I’d basically call on the government to take us into consideration,” he said.
But for Evelyne Cynk, a 33-year-old disability activist and aspiring writer currently living in Germany, it is her dream to emigrate to Ireland, where she feels she will finally be respected and supported as a person with a disability.
Ms Cynk is the first German, and as far as she is aware European, woman to try to emigrate as a person with 24 care support.
Having been accepted onto the MA in Creative Writing programme in UCC, she hopes to move to Ireland next month.
“Ireland is the place where my soul belongs, I’m going to live there and die there, that’s my plan," Ms Cynk said.
"My attraction to Ireland came first because of my aspiration to be an artist and a writer, because I have the experience that writers or artists in particular are taken far more seriously in Ireland than in Germany.
"Now I think that also extends to people with disabilities,” she said.
Ms Cynk has struggled to find wheelchair-accessible accommodation, and new Irish staff to help with her 24 care.
However, despite every struggle, she has been blown away by the support of UCC, The Stinging Fly, and other disability supports.
She believes that it is only a matter of time before the attitudes of Irish people to disability, filters through to universal design.
“Maybe accommodations and accessibility are not that compatible with living as a person with a disability in Ireland right now, but the mindset is far more understanding than it is in Germany. And I think it's only a matter of time until the mindset feeds into the actions,” she said.
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