Spotlight on members of our community living with neuromuscular conditions: Maureen Pigott
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Brendan for sharing his story and raising awareness about McArdle disease, which is also called Glycogen Storage Disease Type V (GSD V). The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition.
As part of our members’ stories series, we are delighted to share Maureen’s Pigott’s story about running as a candidate in the local elections on 7 June. If you are a candidate living with a neuromuscular condition and who would like to share your personal experience of the campaign, please get in touch.
Maureen Pigott (née Brennan)
Name:
Maureen Pigott (née Brennan)
Type of neuromuscular condition:
Spinal muscular atrophy Type 2 (SMA)
What made you go into politics?
Ever since I was a child, I've been advocating for the rights of those in minority groups and in particular, people with disabilities. At 14/15 years old I was running events in the midlands for Joe T Mooney to spread awareness of MDI, and I also was sitting on the Westmeath Junior County Council as my School Rep. By the age of 18, I was studying journalism and politics in Dunboyne. I've always been interested in how to make things change.
How long have you been involved in politics?
For someone who’s grown up as an activist, the answer is, I've always been involved in politics but always from the outside shouting in.
How do you find canvassing, meeting people?
Canvassing is a very interesting experience. My constituency is vast and a lot of it quite rural. Some people love to see you coming for a chat and have plenty of questions, others have plenty of grievances, and some see you coming and pretend not to be in.
What challenges do you face when campaigning in relation to your neuromuscular condition?
So far, the only real issue I've come across are cattle grids... there's just no getting a power chair over those bad boys!
What are the logistics of running a campaign?
There's a lot of pre-planning involved. You need a good campaign manager and someone to keep an eye out for social media trolls, always making sure you’re well rested and eating enough, as well as attending community events. We did two rounds of canvassing in my area so far.
Are you a member of a political party and does the party have a strong level of support in place for disabled candidates?
Yes. I'm running with Sinn Féin. There are other candidates with disabilities also running this year. They always make sure our carers come to events with us and, if we have to do press, it's always in the most accessible way to us.
What advice would you give to a child or young person living with a neuromuscular condition to achieve their goals?
Sometimes you just have to embrace what makes you happy now because your life's goal could be something you've accidentally been working at all along.