I absolutely despise the use of the word ‘hero’ when describing a person with a disability.

I find the term irritatingly patronising and often inaccurate. British Comedian Laurence Clark is making a living by challenging the notion of the ‘inspirational disabled person’, reminding people through his routine that we (people with disabilities) do not need to be congratulated by strangers for achieving the everyday things that other people do on a daily basis, such as going to college, getting married and having kids. In fact, he is so passionate in his refusal to be labelled an inspiration that he named his 2012 stand-up tour ‘Inspired’ and voiced his desire to be recognised as a ‘normal’ person who does normal things.

As a person with Cerebral Palsy myself, I can appreciate how annoying it is when people  have low expectations of you as a disabled person, but I must confess that even I have my heroes. And this particular man, who has been dead twenty-one years yesterday (14 March), has made such a lasting impression on me, even though I’ve never met him, and obviously never will.

His name? Ed Roberts.

I wasn’t going to write this blog because I didn’t want people to think I was dull or lame, but I’ve read back my previous blogs and I think we’ll all agree that that ship has sailed. Ed Roberts was known as the ‘father of the Independent Living Movement’, and it is down to his collaboration with other activists during the 1960s and 1970s that many of us enjoy a Personal Assistant Service today.

When I used to spend days researching the history of the Independent Living Movement, what struck me was the lack of progress for people with disabilities prior to the 1960s.  Just twenty years beforehand, people with disabilities were being murdered en masse by the Nazi regime (it is estimated that 700,000 disabled people were murdered during World War II). The 1960s, however, was a ‘radical’ period of social change, when people in America started to speak out against injustice, and marked the start of women and ‘black’ people as they were known starting to take radical steps to achieve equality.

Ed contracted polio  in 1953, at the age of fourteen. He never recovered, and was essentially paralysed and left dependent on an iron lung. As time went by, he could spend time out of the lung using a technique known as ‘frog breathing’.

 Given the culture of the time, Ed was deeply ashamed of his newly acquired disability and stayed at home, completing some of his high-school education over  the telephone. His mother eventually forced him to go back to school for a few hours a week, and Ed learned that being different was not necessarily a bad thing. He began to see himself as a ‘star’ and wondered how he could use this to his advantage.

Like many people with disabilities, even today, Ed and his mother Zona had to fight so that Ed could complete his high school diploma. The school initially refused to award Ed his diploma because he couldn’t get his driving licence or do PE. This decision was overturned after much protest from Ed and Zona. Ed then decided that he wanted to study at the University of California in Berkeley, and was famously told, ‘We’ve tried cripples before and it didn’t work.’ Eventually he was granted campus accommodation, a small wing of the university hospital, the only place that Ed could put his iron lung. Ed agreed on the condition that the space was treated as a dorm, not a hospital.

Ed’s admission into the University paved the way for other people with disabilities to stay on campus too. They formed a group, dubbing themselves ‘The Rolling Quads’ and started enlisting the help of ‘attendants’ (now known as Personal Assistants) who they recruited, trained and fired themselves. This was a radical concept – disabled people directing their own services. Ed referred to it as ‘cripple power’, and the idea of the person with the disability directing services remains central to the Independent Living Philosophy. Ed helped to open the first Center for Independent Living in Berkeley in 1972.

As you can tell, I’m fascinated by the Ed Roberts story, and always have been. He was one of the pioneers of a service that I, and so many others, enjoy today. Yet in spite of positive progress in Ireland, namely the opening of Dublin CIL in 1992, many people with disabilities in Ireland still live in fear of their Personal Assistant Hours being cut. Many are institutionalised in their own  homes, having a service only to help them up out of bed and put them back into it. Ever since the recession hit Ireland, the concept of empowerment has disappeared and instead we are left to prove, time and time again, that our PA services allows us to live, not just merely exist.

And for me, that’s why I will always try to honour the memory of Ed Roberts – not because he was some absolutely godly man who is my inspiration, but because he was an ordinary man who was prepared to fight for the ordinary things that sadly, many people with disabilities still can’t afford to take for granted – PA Services, education, employment. The only way to achieve true equality is to come together and shout loud to make ourselves heard. We must be Ed’s legacy so that our children can be ours.

To me, Ed isn’t just inspirational. He is so, so much more than that, and deserves to be remembered as more than that. He and his colleagues gave us the opportunity to pursue our dreams, live in our own homes and have our own families. Above all, he taught us never to accept the status quo, as equality will never be achieved through complacency.