From an interview with Mike Squire for the Coventry Evening Telegraph
Linda Green, 1998
Why I Was Determined To Lead A Normal Life
Mike Squire wasn't supposed to live past the age of two. Then he wasn't supposed to live past sixteen. Mike is now 29, has a good job, is chairman of the Jennifer Trust for Spinal Muscular Atrophy and is a campaigner for better rights for people with disabilities.
When Mike was growing up his parents were told he was one of only a hundred people in the country with the rare type one of the SMA disease.
It was only when he attended the Jennifer Trust's first conference that he was told that if he had suffered from type one SMA he would have died before his second birthday.
Mike has severe muscle weakness, particularly around his spine, and consquently can't walk. He said: " I discovered I actually had type two SMA and that the disease wasn't as rare as I had thought.
"Unfortunately when I was growing up in the seventies there was no Jennifer Trust around and consequently my parents weren't given the correct information.
Funding
"When I was young I had to go to special school and when I went to bed I needed to be turned-over every night by my parents.
"I told them I wanted to be a normal son, to give them back their lives and to be independent. I wanted to do what everyoune else did."
Mike left his home in Somerset at 16 and moved to Coventry to attend college. He later completed a degree in information design.
He managed to get funding from the Independent Living Fund to pay for three part-time personal assistants to look after him.
Mike, who lives in Baginton, said: "I refused to pay for my care myself. Other people don't pay to put their socks on so I couldn't see why I should.
"I always manage to get my point across, I have a good brain and can communicate and shout and am determined not to be put down just because I'm disabled."
Mike got a job as service manager with the Council for Disabled People in South Warwickshire and combines that successfully with the chairmanship of the Jennifer Trust.
He is proud to be seen as a role model. He said: "I'm known as a beer-drinking rebel and the fact is that young people can relate better to other young people." | 
