‘I’m 25 and fear I’ll be put in a nursing home’

I am 25 years old and I have a perpetual fear of ending up in a nursing home. This isn’t far-fetched. I have cerebral palsy and I am a wheelchair user.

It’s now many years since the late great Martin Naughton helped kick-start the Independent Living Movement. He fought for personal assistant (PA) services and the rights of disabled people to live independently. (Naughton is the subject of Christian O’Reilly’s No Magic Pill, an Irish Times Theatre Award winner). When Naughton first became an activist, most disabled people faced institutionalisation. This is no longer inevitable, but without the help of family, carers and personal assistants, it’s still a reality for many disabled people.

[ ‘I’m tired. I’m scared. I know I have the potential to do something good’ ]

A PA helps me live my life, but the PA services can be hard to access. They can help me take notes, type, operate technology, gather my things, help me with personal hygiene and go to the places where I need to be. Throughout school and college I had access to special needs assistants or personal assistants, but when I left education in autumn of 2021, my automatic right to such services suddenly disappeared. When I first applied for funding for PA support through the HSE, I was told that they were unable to offer me anything at that time.

I am a creative person who wants to contribute. I co-produce and co-host an award-winning podcast, Dan and Darragh Do Ability, with my friend Darragh McNicholas. I have a degree in creative digital media from TU Tallaght and a masters in broadcast production from IADT. I want to work in radio or television, but I couldn’t in good conscience apply for a job without a PA. Without the help I wouldn’t be able to do the job.

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While my college friends were out starting their lives, I felt like I was in chains. Between autumn 2021 and early 2022 I contacted politicians and journalists. I spoke to this paper about the inadequacy of the PA services in Ireland. I was on Today with Claire Byrne and Ireland AM telling my story. It shouldn’t be necessary for people to have to publicise their personal trauma to get the services they need to live. In March last year, to my relief, I was given 48 PA hours by the HSE. There were still problems. The supported PA service is currently facilitated by the Irish Wheelchair Association, and for months they couldn’t find anybody to do the job.

I applied for a three-month RTÉ internship and subsequently learned I was accepted. It was a dream opportunity

At around the same time, I applied for a three-month RTÉ internship and subsequently learned I had been accepted. It was a dream opportunity. As a child I would watch TV and listen to radio, fascinated by how programmes were made. But because I still had no PA I wasn’t sure I’d be able to do it. I should have been overjoyed but I was stressed, anxious and frequently on the verge of tears. It was so draining.

[ ‘You have an upset three-year-old not knowing why her brother is lying there, shaking’ ]

I eventually found my PA, Doireann Fitzpatrick, independently. Due to the complexities of the system, she only officially started work right before I was due to start at RTÉ. She was a life-saver. She is my age, fun to work with, and her assistance allows me to be productive and live my life. During the internship I worked with Angela Scanlon’s Ask Me Anything, The Late Late Show, the Toy Show and RTÉ’s development team for 2023. On my first day, a colleague asked: “What ideas have you got for us?” It felt magical. I sat in on production meetings. I interviewed contributors. I wrote production briefs for presenters. I felt valued and useful. It was a very special experience. The first time I saw my name on the running order, I got quite emotional.

Ironically, without the help of a PA I would have been unable to make this film about my need for a PA

Recently I also directed a short documentary about my need for a PA for Virgin Media Television, as part of the Sharp Shorts programme funded by Screen Ireland. That will be screened in the Lighthouse on May 9th and will subsequently be on the Virgin player. The irony here is that without the help of a PA I would have been unable to make this film about my need for a PA.

[ ‘I remember lying in the hospital wondering would I ever be able to take care of this child at home?’ ]

This life of creativity is possible when I have someone to assist me. But the service is insecure. The process needs to be streamlined. PAs themselves need to be valued. Personally, I would like the HSE to unbundle the funds I receive for PA hours from the services provided by the Irish Wheelchair Association, so that I can control the budget myself. As things stand, there are independent service providers which can take the same budget and pay my PA a higher rate. There are some indications this might be possible.

I always have some anxiety about my future. I depend a lot on my parents, but my father has cancer and my mother has serious back and neck issues. For me to live independently I would need more than one PA. Doireann is brilliant, but she can’t work around the clock and when she’s absent there’s no back up service. In 20 years I would like to be working in broadcasting and living independently. I would love to be earning a living creating interesting and inclusive programmes. And yes, if The Late Late Show is still there, I’d be happy to host it.

A disabled Late Late Show host? Why not?