Tag Archives: Ed Roberts

Remembering the Father and Mother of the Independent Living Movement

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Judy Heumann and Ed Roberts are both recognised as prominent figures in the international Independent Living Movement. It is remarkable to think that two complete strangers from opposite ends of the United States would come together to spearhead what would evolve into an International Disability Rights Movement. This month, as we mark the anniversaries of their passings (Judy – 4 March 2022; Ed – 14 March 1995), I find myself reflecting on how the actions of these two individuals led to the formation of an army (in modern terms, a collective), that fought for equal rights for disabled people worldwide.

When I first started working with Offaly Centre for Independent Living in 2008, my first assignment was to research and understand the origins of the Independent Living Movement. I knew about Personal Assistance, but nothing about the existence of a civil rights movement for disabled people. I also knew about Rosa Parks’ refusal to give up her seat on the bus, but I’d never heard about the feisty New Yorker, Judy Heumann, who led a demonstration shutting down the streets of New York, before orchestrating what would become known as the “504 sit-in”. Nor had I heard of a young Californian called Ed Roberts who conquered his self-pity and established the first Center for Independent Living, after setting up an informal team of assistants that helped him live independently while he studied at the University of California in Berkeley.

Ed and Judy (I refer to them by their first names as I think of them as comrades or allies, not faraway idols) are often referred to as the Father and Mother of the Independent Living Movement. Both had polio, but Ed had acquired polio later in life, at the age of fourteen, and so he perceived himself differently to how Judy did – his journey to self – acceptance saw him transform from “helpless cripple” into a “star”, whereas Judy says in her autobiography, Being Heumann, that she always believed that she had a right to exist on an equal basis with others. Ed was also more significantly impaired than Judy, and one of the obstacles to his attending university was finding somewhere that could accommodate the 800lb lung he slept in at night. Ed was the first wheelchair user to attend the University of California and eventually, he was offered a wing of Cowell Hospital, the on-campus hospital, which he accepted with the caveat that he could treat it as a dorm, not a medical facility, with the same freedoms that non-disabled students enjoyed.

The establishment of the first Center for Independent Living in 1972, led by Ed and a group of disabled University of California students who dubbed themselves the Rolling Quads, marked the beginning of a battle for disabled people to have their civil rights recognised. By sharing their experiences and witnessing the nitty-gritty of each other’s lives, they formed a strong bond among themselves based on a mutual desire to enjoy a better quality of life, as equal citizens in America. Progress proved slow. In 1973, the Rehabilitation Act was passed, but Section 504 – which rendered it illegal for state-funded services to discriminate against persons on the basis of disability – was vetoed. Age-old excuses of cost of adaptations were trotted out as valid reasons to not sign the regulations, so passing the Act was merely paying lip service to equality for disabled people. 

By 1977, a frustrated Judy had had enough. In her eyes, and the eyes of her supporters and fellow activists, sitting around waiting for something drastic to happen was time wasted. Using her experience of successfully suing the State of New York for denying her a teaching licence as she was perceived to be a fire hazard, Judy and what was referred to at the time as an “army of the handicapped” gained access to and refused to leave the offices of Health, Welfare and Education in San Francisco. Judy was highly organised, and soon various committees had been established to organise food and bedding, as well as entertainment. Nonetheless, the physical impact of sleeping on mattresses on the floor was roughly felt by many protestors, many of whom developed bedsores. Despite this, it seemed that the protestors in San Francisco knew that there was too much at stake to back down.

In the later stages of the sit-in, Evan White, a news reporter, had amassed an impressive amount of footage of the protests. He described his jubilance at having the honour of sitting in during “meetings of strategy” with disabled protestors, as Judy led long meetings with fellow protestors every evening that often lasted into the wee morning hours. Everyone was given a say, and a job to do. By a stroke of luck, a nationwide television strike enabled Evan’s recorded reports to become front and centre of the country’s viewing schedule. This worried Califano more than the sit-ins themselves; it had the potential to damage his public image as a politician. On the twenty-fourth day of the sit-in, Section 504 was signed, a feat that was achieved by the will and determination of a strong collective of disabled people. (If you want to find out more about this sit-in, I recommend watching the award-winning Crip Camp on Netflix). 

Indeed, if we as activists can learn anything from Ed and Judy, it is that disabled people working together is the best way to attain our human rights. Having experienced discrimination and exclusion firsthand, we know best what we need. Although our lives are better than they were fifty years ago, we still battle to hold onto those hard-won rights that activists such as Ed and Judy, and here in Ireland, that Martin Naughton, Michael McCabe, Dermot Walsh, Ursula Hegarty and so many others fought for us to have. We must also come to accept that we work best as a collective. Nothing will change if we wallow in self-pity. Instead, we must use our experiences to make a better, more inclusive future for all of us. We owe it to Judy and Ed, and we owe it to ourselves, to never settle for a lesser life than the one we aspire to.

The Search for the Hero

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Like many of us, I woke up this morning to the news that Stephen Hawking, absolute genius, died at the age of seventy-six, over fifty years after he was expected to. For many people with impairments, living past their life expectancy is a feat in itself. I won’t insult anyone reading this by pretending that I fully understand the significance of Hawking’s work to our understanding of the universe, because I don’t. I’ve failed many a science test in my time – scientific matters, to me, is what Chinese is to most English-speaking people.  However he was an extraordinary man, an example of what the human mind is capable of.

For many, he is an example of ‘mind over matter’, of ‘triumph over adversity.’ To me, however, he didn’t achieve these things ‘in spite of his disability’ because to me, his disability wasn’t relevant. He simply achieved them.

When some people think of disability, they think of Hawking and what he’s achieved. However, Hawking’s genius was part of his own identity. I intend to read his book in the near future but I don’t expect to understand any of it (I am ridiculously bad at science).

I read online this morning that Hawking shares the same anniversary as Albert Einstein (freaky coincidence, no)? He also shares an anniversary with another man who made a much smaller but (in my eyes) equally important contribution to society.  And that man was Ed Roberts.

I’ve blogged about Ed Roberts before, and every year I remember him on his anniversary because he was a leader in the introduction of Independent Living around the world. He and his colleagues challenged the paternalistic model of disability, and fought to be recognised as a person capable of making their own decisions. Like Hawkins, his physical ability was severely restricted (the result of polio in Roberts’ case) but his ability to direct people and think independently was not. When I started working in the area of disability ten years ago, I was told to know the Ed Roberts story inside and out. I read articles, personal testimonies, interviews.

I was so in awe of him (and still am in many ways) that I put him on a pedestal. I aspired to be like him: ruthless and unflinching in the pursuit of equal rights for people with disabilities. He has rightly garnered a lot of respect from millions of activists across the world. Were it not for his insistence that he knew his own mind, that he wanted to be empowered rather than being a passive recipient of care, chances are that I and many others would be relegated to the back room of our parents’ houses, never having the opportunity to leave the house.

Or perhaps I’m being naïve. After all, although Ed is known as ‘the father of Independent Living,’ there were many other activists out there with the same mindset at the  time, a group of people who collectively became known as ‘The Rolling Quads.’ The Rolling Quads brought into existence the first Center for Independent Living in the University of California, Berkeley, which was a Personal Assistant Service directed by the disabled people themselves. This revolutionary act led to the establishment of hundreds of Centers for Independent Living across the world.

Ed Roberts and Stephen Hawking were both extraordinary people who, unfortunately, now exist only in history. As someone who is becoming increasingly preoccupied with disability politics, despite having convinced myself that the only thing I really want to do is write, I have found myself panicking over the last two years as I watch my esteemed peers slip into the next world. We thought Martin Naughton was invincible; then our faith was tested six months later (on my birthday in fact) when Donal Toolan passed away last April. In the last seven months I’ve seen the untimely demise of another two of my role models: Eugene Callan and John Doyle – both strong mouthpieces for  the Independent Living Movement.

I remember well each separate occasion that I met these four men for the first time, and what struck me about them was their sense of conviction. Chances are they weren’t entirely sure what they were doing – nobody really knows at the beginning (I know that now) – but they had the courage to articulate their thoughts and opinions, be they right or wrong, and soon other people started to find their own courage, their own voice.

We live in a different world now. Roberts, Hawking and even Martin Naughton and his peers paved the way in a world where there were no expectations of disabled people. The fight is not over yet. Ireland has ratified the UN Convention of the Rights of People with Disabilities but not the Optional Protocol which enables people to report breaches of the convention to the UN. Our Personal Assistant service is becoming more medicalised by the day and less about what we need and more of a  tick-box exercise. We are reaching a critical point in disability politics where we’re either going to be free to make our own decisions, or the victims of discrimination and safeguarding forever.

We have the opportunity to be our own heroes.

Let’s take it.

 

 

 

 

 

 

 

 

In Memory of an Inspirational Hero

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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.