I met Niamh in her home on the banks of the canal. It's secluded, remote, peaceful. Her Mum answers the door and welcomes us into the kitchen, country style (through the back door). The house smells divine thanks to the plant-based cookies Niamh has been baking so considerately.

Niamh is back living in her parents home, like so many other 29 year olds. She’s done quite a bit of travelling, during which she met her husband, who also lives with them.

Niamh would prefer to live in Dublin city, in the thick of it all. Where she can easily access public transport and have everything at her fingertips. However, if you think about how hard the housing crisis is for people right now, it’s even worse for disabled people.

Niamh has a condition called Friedreich's ataxia. It’s quite rare, with only about 200 people in Ireland with it (including Niamh’s younger brother). It’s a neurodegenerative disorder that causes progressive damage to the nervous system, including impaired coordination, muscle weakness, speech problems, and heart issues.

Niamh is an accomplished journalist. It’s a career she knew she wanted from a young age, she set her sights on it and worked incredibly hard and went on to write for the Guardian and Al Jazeera. She takes pride in giving disabled people a voice in the media.

Sadly, Niamh knows that she has a battle ahead of her. In 2023, the USA approved the first ever treatment for Niamh’s condition. It’s a treatment that could stop the progression of her disorder and give her a better quality of life for longer. However, the Irish government has decided not to fund the treatment.

As Niamh’s condition worsens, she knows her speech will be affected soon, as will her ability to write. We’ve been chatting for about 30 minutes at her kitchen table and already I can sense it’s tiring her. It seems wholly cruel and unfair, that the people who we should be protecting and caring for most in society, are those who will be expected to lobby and campaign for the medical treatment that would improve their lives so much.

Come back tomorrow for another podcast/story/portrait. We’re interviewing and photographing people from all over Ireland, collecting their stories and sharing them daily. You can be a part of it too, just follow @ruthlessimagery online for more details.

x R

Sin Scéal Eile - That's Another Story was hosted and created by Ruth Medjber, with sound by Ronan Lally. The podcast is produced by Dee Reddy at Poddle Audio with original music by Elaine Mai.

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