‘Society has to stop treating the marginalised and disabled as charity cases’

Sarah Fitzgibbon’s youngest daughter Poppy was diagnosed with ataxic cerebral palsy at 13 months.

Now 11 years old, Poppy has profound and multiple learning difficulties. She is a non-verbal wheelchair user who attends Scoil MoChua in Clondalkin in west Dublin.

Sarah – a mother-of-two who works part-time with the Abbey Theatre’s community and education department – set up Poppy’s Wheels, a benefit fund designed to make her daughter’s life better, as well as the lives of other children with a disability.

Through the fund, other families with children who have a disability “can achieve small victories”, says Sarah. “We loan Hippocampes [all terrain wheelchairs] to families and centres so that children and adults with restricted mobility can access forest walks and beaches.”

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1) What is your proudest achievement?

“Staying sane is the first thing that comes to mind, quickly followed by my family. We are a resilient bunch. Through parenting – especially special or additional needs parenting – you meet an amazing number of people who humble you with their care, tenacity and kindness in the face of adversity. I can’t name one ‘achievement’, but to stay positive in today’s world is an achievement.”

2) What motivates you in your work and life?

“I inherited an intense work ethic so I am on the go, non-stop. I am very hopeful and positive, and I think working with different groups, especially children and young people, is key to that. My motivation is to encourage creative exploration with these groups, to engage them in social or political issues and encourage empathy. Since 2000, I have been using drama and theatre to explore social issues with junior infants to Transition Year students. I am a better carer when I can carry on my creative work.”

3) What do you do to keep mind and body healthy and well?

“Maintaining good mental health is vital when you are a carer. The physical weathering combined with social isolation, bureaucracy and uncertain futures for you and the person you care for can take a huge toll on a carer’s mental and physical wellbeing. Our lovely rescue hound has been great and my best friend got a rescue dog at the same time. I have no choice but to get out and about. It can turn around a bad day, especially with a friend. I struggle in the dark months but once we get light in the evening, I take to the garden.”

4) What are the most important factors to maintain a healthy society?

“Rights-based justice is the key. Our society has to stop treating the marginalised and the disabled as charity cases. They are Irish citizens who need to be treated as such. They need to be afforded all the compassion and support a civilised society can offer to fulfil their potential in life and to support their families.”

5) What needs to be done in Ireland to achieve this?

“We need to stop outsourcing our social responsibilities to charities and start to accept that these are rights issues at the heart of civil society and are a governmental and societal responsibility. The health service in this country has been systematically vandalised by a succession of neo-liberal administrations, hell-bent on pushing us towards a privatised system of medicine.”

6) What do you think is the most pressing issue in Ireland today?

"I think we should stop Hiqa closing all congregated settings for the disabled. Equinox Theatre Company did a spectacular show last year on this issue, created and performed by adults with intellectual disabilities who see congregated settings as places where they can build their communities of care, friendship and support."

7) How do you think the Minister for Health needs to tackle this?

“Dismantle the HSE. Embrace a real commitment to socialised medicine. Take on the vested interests in Ireland within the system such as the over-powerful consultants, the Kafkaesque bureaucracy and other counter-intuitive ‘management’ of the HSE. The outsourcing of money and responsibility to charities are doing what should be the work of Government.”

8) What do you do to relax and unwind?

“I am a box set addict. I have a group of female friends who gather to watch box sets over the winter months. It started with ‘Downton Abbey’ and has carried on since. It’s a great way to connect. And I love going to the theatre when I can.”

9) What makes you laugh?

"My partner, Jonathan Shankey. Not bad to be still laughing after 20 years, but no one cracks me up more than him."

10) Where would you like to live other than Ireland and why?

"I love this country and I believe in it and its people. Of course, I fantasise. It's always somewhere snowy like Scandinavia. I have been lucky enough to visit Norway, Finland and Russia before Poppy was born and Lithuania and Holland since. I adored Amsterdam where I took my partner for his 50th birthday. I think I could live there. Also, the Nordics seem to have the most enlightened approach to disabled rights in the world."

[ irishtimes.com/healthheroes ]