The Search for the Hero

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.

 

 

 

 

 

 

 

 

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Rebel Girls

My six year old daughter, like most children, likes a bedtime story before she goes to sleep. Her latest favourite book is Goodnight Stories for Rebel Girls, a collection of stories about famous women who broke the mould in some way. There’s over a hundred of them: Coco Chanel, Jane Austen, Amelia Earhart to name a few. However, no matter what ones we read, she always insists on reading the story about Rosa Parks. It’s the story of a woman of colour who refused to give up her seat on the bus for a white person. Eventually, thanks to Rosa Parks, apartheid soon became illegal.

‘Why did black people and white people not sit together?’ my daughter asked, confused. There’s a healthy mixture of nationalities in her class, and my heart sunk at the idea that she would, unintentionally, start to label them as different.

‘Because people are mean,’ I replied. ‘Sometimes people make up stupid rules to suit themselves and hurt others, for no reason. It’s a bit like bullying.’

‘People are mean to you too, sometimes,’ she observed. ‘They laugh at you, call you names. But you never get hurt, and you never give out to them or get angry about it. If I were you, I would.’

I looked into her round blue eyes and smiled by way of reply. Plenty of time when she’s older, I thought, to sit her down and explain everything. How I grew up in a mainstream environment where I spent too much time trying to fit in. How I fought to prove myself as a person of worth, in school, in college and at work. How hard I’d fought to prove myself as a worthy mother, not only to professionals, but to Ali and even to myself.

Tomorrow, the 8th March marks International Women’s Day, a day to acknowledge and address both the real challenges facing modern women and the fantastic achievements that women have made throughout history.

But today, 7th March 2018, marks an equally significant milestone: a solid commitment from our government to ratify the United Nations Convention on the Rights of People with Disabilities (aka the UNCRPD). The disabled population of Ireland has been waiting for this for nearly twelve years. And it seems inappropriate of me to admit that after all this time, after blogging about it so much, I don’t feel that lightness, that relief that I thought I would.

Oh, it’s a victory for sure – we have won a battle, all right – a battle we should never had to fight in the first place. The onset of the recession brought waves of devastation to the disability sector, and the aftershocks are still in evidence today. The disability budget was stripped down to the minimum, and many disabled people lived basic lives. Unable to afford their own accommodation or to get a job, many were forced to live with their families or in segregated/institutionalised settings. Fear soon consumed us, and many of us were left afraid to complain lest whatever we had left was taken away from us too.

I have spent my adult life hearing stories about wheelchair users being trapped on trains, about disabled parents living in fear of their kids being taken (and sadly I’ve also heard stories of people who’d love to become parents but don’t have the energy to fight the system/jump through hoops as we did), about people going for countless job interviews and never getting a job.  And as much as I’d love to think it would, ratifying the UNCRPD isn’t going to mean anything unless we truly believe  that we are equal and that we are willing to start a new narrative.

Tomorrow, on the 8th March, International Women’s Day, I will be thinking of all the wonderful rebel women I know, especially those with disabilities. The ones who fought to be educated. The ones who decided that they didn’t want to spend the rest of their lives in the back room of their parents’ houses. The ones who had lots of sex and had babies. The ones who continue chipping away at the inequality they face, both as women and disabled people. I’ll be thinking of my mother, who didn’t believe in mollycoddling me, who taught me how to be self-sufficient. I’ll be thinking of my daughter, the future generation, who I know will take it upon herself to make the world a better place for the rebel girls of the future.

And tomorrow, I’ll continue to lead by example, as best I can.