THE BIG INTERVIEW: Giving a voice to disabled people
Martin Kelly, 42, is a self-advocacy co-ordinator and hate crime ambassador with Swindon Advocacy Movement. Martin is married with a daughter and lives in Moredon...
MARTIN Kelly empowers people to claim their right to be heard and respected.
Nobody could accuse him of lacking insight into what it means to be voiceless.
“In 2009 I had a stroke and became disabled myself,” he said.
“I went from service provider to service user overnight.
“People were trying to make decisions for me because at the time I couldn’t speak very well and couldn’t walk at all. I had to learn both skills again.
“Certain people, certain health care professionals, thought it was okay – with the best intentions – to make decisions on my behalf.
“I got my voice back and I thought, ‘I know now what it’s like to not have a voice.’ “It is important that I use the voice I’ve been given back to try to empower those who do not have that voice.”
The stroke itself was completely unexpected.
“It turned out that I’d been born with a hole in my heart that had gone undetected.
“I was at home. I’d put my nine-month-old daughter to bed about half an hour before. Because of my nursing training I recognised the symptoms very early, to the point that I walked into the ambulance.
“I’m forever grateful to the paramedics who put me on oxygen straight away. That probably saved me an awful lot of damage that could have been done to my brain.”
To this day Martin has no sense of taste or smell, although he still enjoys various foods for their textures.
He has difficulty balancing because his left side is numb, and is prone to breaking his fingers on that side without realising. He once snapped them in the mechanism of a folding deckchair and didn’t realise anything was wrong until later, when he tried to pick up a piece of cutlery.
He said: “On the positive side, it’s not painful...”
Martin is originally from Little Hulton, a village near Bolton. His mother was a child minder and his father – Martin doesn’t remember his job – died when he was eight. He has a brother and sister.
Martin left home at 15.
“My grandmother was developing dementia and I moved in to help my grandad run the household and look after her.
“That goes back to the beginning of my story because that’s where I first developed an interest in people with disabilities and what was the best way to support them.
“I wanted to be a nurse first and foremost, but the careers adviser at school was not the most enlightened person and described nursing as a woman’s job.
“Being the mid to late eighties, computers were the big new thing and I was being pushed into learning how to use them – which I did.
“But I soon learned that you have to know the ins and outs of them to make a living at it.”
His ambition to be a nurse resurfacing, he went to college in Salford and then to Liverpool John Moores University, where he studied mental health nursing.
He also worked at a hospital in a ward for dementia patients, where his life experiences with his grandmother helped him relate to patients and their loved ones.
“They knew that I knew,” said Martin.
A motorcycle accident cut his studies short, but didn’t prevent him from returning to work in hospitals in Bolton. He then decided on a change of location and moved to Swindon a decade ago.
He initially worked on a project helping ex-offenders, then became head of care at Farleigh Further Education College in Old Town, devising care plans for students with Aspergers and associated issues.
This was followed by work with Living Options – a local branch of Scope – and Music Alive, a Purton organisation offering musical opportunities for people with learning disabilities.
So what is the role of Swindon Advocacy Movement?
“It’s very much ensuring that people with learning disabilities have a voice in their society and know their rights, so they can make informed choices.”
People with learning disabilities have an input into all aspects of the charity’s work, which ranges from dispelling uninformed people’s misconceptions to offering advice about dealing with officialdom.
Some of the people assisted by the charity are parents with learning disabilities who face official questions about their fitness to look after their children – not because of any failings but simply because of their disability.
Misconceptions about people with learning disabilities are not as rife as they once were but still pop up. Martin cites a classic example.
“It can be a place where somebody would ask a carer how many sugars somebody has in their tea when they’re quite capable of answering the question themselves.
“That person then feels completely disempowered.
“Another cracking example of this is when I was working with Music Alive.
“There was a man with profound learning difficulties who was brought in to do some music with one of our session leaders.
“He often got agitated at home, and at home they would put him in his room and have him listen to whale song to relax him.
“It turned out that he didn’t like whale song but he was a very big Nirvana fan.
“A Nirvana CD was bought for him so when he went home he could go and listen to his new CD.”