‘We need inclusion and real reform on all fronts’

A lot still needs to be done when it comes to supporting wheelchair users, according to Joan Carthy.

Joan is the national advocacy manager with the Irish Wheelchair Association (IWA), and is a wheelchair user herself. She suffered a spinal cord injury in a car accident at the age of 21.“That’s 35 years ago and I have had a very full and busy life since then,” she says. And part of that has been working on improving services.

Each year the IWA puts forward a list of needs in its pre-Budget submission but the same items appear year after year, as very little gets ticked off the list.

There’s the need for the Motorised Transport Grant and the mobility allowance to be reinstated for new applicants (still absent after 11 years), for example.

A fire needs to be lit under waiting lists for wheelchairs too. More speech and occupational therapist services are required also. The list goes on.

Joan believes that many people who use wheelchairs just want to live independent lives, and that disability exists not because people use wheelchairs but because the wider environment isn’t accessible.

“Disability is more about the barriers that are put in our way than the medical diagnosis,” she says.

“It’s having the right to live your life independently. We now have the United Nations Convention for the Rights of People with Disabilities (the UN CRPD) and all governments and councils talk about it but it hasn’t really made a big difference in anybody’s life yet, unfortunately. I look forward to the day when we can say ‘yeah, we got all the boxes ticked.’”

Joan believes lack of funding as well as lack of therapists and personal assistants for those with disabilities are the biggest problems.

Getting access to these services can be like a postcode lottery, she says. “It depends on what HSE area you fall into and whether they have budget or not. The other part of the problem is that when it comes to wheelchairs, even trying to get a wheelchair fixed, you could be weeks and months waiting for a part to come in.

"There really doesn’t seem to be an understanding that when somebody is left without their wheelchair, they may as well be left without their legs.”

Many people with disabilities often also need the services of others, including personal assistants. “They need somebody to be their arms and legs, to assist them in all sorts of things from getting up in the morning to socialising to getting or retaining employment,” she says.

More to be done

Joan says while the Government has invested money in disability services, it is not nearly enough.

“A big part of the problem is that a lot of personal assistant services are run through organisations like the IWA and we don’t have pay parity with the HSE.

“People who work for the IWA are not getting the same amount of money per hour as they would if the HSE were paying them directly.

“The Workplace Relations Committee and the unions are fighting it at the moment but it has been ongoing for years. Unfortunately we are haemorrhaging staff because of this.”

She highlights several issues related to transport and access too.

“Transport services are just not wheelchair accessible enough and on buses and trains you still have to give advance notice of travelling so it’s impossible to do anything spontaneously.”

Problems are worse for people in rural Ireland, she believes.

They need somebody to be their arms and legs, to assist them in all sorts of things from getting up in the morning to socialising to getting or retaining employment

“People are more reliant on family members driving them where they want to go. Up to 11 years ago people could avail of a Motorised Transport Grant and a Mobility Allowance but these still haven’t been reinstated for new applicants.”

Lack of appropriate housing for those with disability is also a huge issue.

“For many it’s a crisis within a crisis,” Joan says. “The problem is that none of the new builds, even the social housing ones, are being built to a wheelchair livable standard.”

Money wise, as well as a rise in the social welfare payment for those with disability, the IWA is seeking a new Cost of Disability Payment.

“There’s a huge extra cost to living with a disability,” Joan says. “A government report in 2021 stated that people with significant disabilities spend between €9,500 to €13,000 on their disability.

“When you factor in inflation, that figure has risen to between €13,000 and €15,000 annually.”

All this militates against people who want to work.

“This can be a huge inhibitor because people would lose their benefits while having extra costs like transport if they take a job.”

Importance of advocacy

Emer Begley is director of advocacy with the Disability Federation of Ireland, a federation of member organisations working with people with disabilities to implement the UN convention mentioned above.

“Almost 1.2m people reported having a long-lasting condition/difficulty or disability in the last census and a proportion of those are wheelchair users.”

Accessing services is a major difficulty for many, she states, but we need to move away from the idea of caregiving.

“It’s not just about caring [tasks], it’s about an infrastructure of support that ensures people have a good quality of life, and are able to participate in society to the same extent as everybody else does,” she says.

More joined-up thinking is needed in relation to supports, she believes.

“We need to look at the person as a whole and move away from looking at things in silos and look instead at things in the round.

“For instance, transport and employment access enables people with disabilities to have decent work and job satisfaction.”

She also mentions the need for society to be more aware of the needs of people with disabilities, stating that they should be consulted at the design stage of new projects.

“Take for example, the Re-Turn bottle scheme. The collection units are too high for wheelchair users and they can’t reach them. This means they are also being financially penalised by not being able to return their items.

“These things send messages to people like ‘you’re an afterthought’. What we need is inclusion at the design stage and real reform on all fronts.”

Stephen Stack, Co Kerry

Stephen Stack (45) from Moyvane in Co Kerry has cerebral palsy and first featured in Irish Country Living in 2010.

Working as a property journalist then, he enjoyed many activities – although he disliked comments like ‘ah, the poor cratur’ and he found some elements of life challenging.

“Most people are grand about my disability,” he said at the time, “but some don’t know how to handle it.

“They say stuff like that and think they are doing a great thing but all I want is respect and to be treated and talked to like anyone else.

“It’s a lack of awareness rather than ignorance, I think.”

Fast forward 15 years and Stephen has had to sideline his scooter, unfortunately, and give up his job of 12 years as publicity officer for Listowel Family Resource Centre. This was due to having two serious spinal operations, one in 2021 and the other in 2023.

“The second operation was very hard to recover from,” he says. “I lost confidence in my legs and not being able to walk got into my head and I didn’t want to go out. I was looking for answers where there weren’t any.”

One day, though, after a friend’s funeral, Stephen decided to do what he could to get better.

“I knew I had to make changes because I wasn’t a very nice person to be around, I even hated being around myself,” he says. “I had lost interest in everything. I was lucky enough to find a good counsellor and she has helped me to stop catastrophising and to go out into the world in a wheelchair.”

Stephen now uses a therapeutic chair.

“It can tilt back to help my muscles relax so that spasms aren’t such an issue. It’s a mobility chair as well that I use to go to the shop.”

Stephen also uses a walker around the house, something that he says he would be lost without.

Thankfully the operations, performed at Cork University Hospital, have lessened the pain he was experiencing from a condition called spinal stenosis.

“Now I do a lot of computer stuff, like posting content for a village Facebook page and I go to the village most days just to air my brain and shop. The footpaths around here are quite good and there is a wood path that I can use to vary the journey to the village too.”

Stephen is also hopeful for the future.

“I would hope to get some kind of employment because of the nature of today’s world and the skills that I have.”

Living with his parents, he finds his physiotherapy sessions – provided three times a week by the IWA – very helpful. The HSE provides home help twice a day and supplied his therapeutic wheelchair.

“It’s a come-a-day, go-a-day life but I’m as good as I can be. I would say to readers that anything is possible if you have hope and keep going.

“If you’ve got the will to do it, there is always a way,” Stephen says.