Is ‘Activism’ A Dirty Word?

Every so often, I face a dilemma. It usually happens when I’ve taken on too much with writing or disability-related stuff and I find there’s just not enough hours in the day to do everything, which I find quite frustrating. It’s times like this where I find myself staring at the laptop screen, my finger hovering around the ‘delete’ button where the file that my so-called ‘novel’ is saved under. At these times, I’m ready to rip down this blog, pretend it never existed, start again.

It’s been quite a busy year, and hopefully it’ll continue to be busy for the rest of the year. In a bid to leave the disability world behind and fully embrace the world of writing, I joined the board of CIL and decided that I needed to take promoting the independent living philosophy much more seriously. (I know, it doesn’t make sense to me either). With every day that passes, I find myself becoming increasingly frustrated with the world around me, a world that I have worked hard trying to fit into. When another HIQA report is released detailing the shortcomings in residential homes, I roll my eyes, rant about it on Facebook, even write blogs about it.

Lately, however, I’ve been wondering: when it comes to fighting the status quo for people with disabilities in Ireland, am I copping out? I know I joke about being an armchair activist, but is that what I am – someone who’s good at talking the talk but reluctant to take any real action?

And is it because I’ve been conditioned to believe that no-one likes an ‘angry crip’, that no-one will ever take me seriously as a person or a writer if I choose to persistently bring so-called ‘disability issues’ into the mainstream with this blog?

I didn’t identify as an activist for a long time for this reason. I also felt like I had no right to identify as an activist. Looking back at all the great activists throughout history, they are great because they achieved something tangible. One of my greatest heroes, Ed Roberts, is the reason why many of us enjoy Personal Assistance today. During the ‘eighties, a group of wheelchair users in the US stopped buses and climbed up the steps to highlight how inaccessible they were. I love to hear such stories of radicalism, being a tad of the dramatic disposition myself. These so-called ‘radical’ actions brought about the implementation of the Americans with Disabilities Act 1990. Two years later, the first Irish Center for Independent Living was set up in 1992. These were real, remarkable achievements.

About a month ago, I watched a programme called In From The Margins, which was produced in 1993 but may as well have been filmed last week, such is its relevance to 2018’s disability politics. It followed Ursula Hegarty’s transition from residential care to a home of her own, and what struck me the most about the programme (aside from the late Donal Toolan having an abundance of curly black hair!) was that the issues Ursula faced are still facing people living in hospitals or residential homes today. It’s estimated that around three thousand people with disabilities in this country are living in residential homes or care settings, sometimes against their will, which is in direct violation of Article 19 of the United Nations Convention of the Rights of People with Disabilities. We know this because there are articles written about it sporadically every few months. Invariably there is uproar, and then it dies down.

Of course, these issues don’t cease to exist just because they’re not in the public domain anymore.

A friend of mine alerted me today that a guy called Kevin was talking to Joe Duffy on Liveline so, despite being in the library at the time, I immediately tuned in on my phone. Kevin, who was formerly a solicitor but had to leave his post early due to his MS, has been living in residential care in Dublin for the last thirteen and a half years. He is fully corpus mentis, but is lonely – in his nursing home, many of his fellow residents have dementia or Alzheimer’s, and therefore are unable to engage in conversation. He spends a lot of time in his room watching telly, and is so bored that he ends up going to bed early.

‘This is frightening,’ I texted my friend after listening to Kevin.

‘If it were any other sector of society there’d be uproar,’ she wrote back. ‘I try not to be an angry activist, but… Jesus!’  And there were those awful words, angry activist. What we strive not to be. Because no-one likes to listen to people drone on and on about the violation of human rights. We should be nice crips, smiling, not complaining all the time. After all, how are we ever going to be equal if we always point out our differences?

We have been conditioned to believe that anger is a bad thing, that we should be grateful for the progress that’s been made already, that protests are undignified and a waste of time, but history illustrates the opposite. So what are we afraid of? If you believe that one person, or a group of people can help change the world, then who are you waiting for? That person is the same person who looks back in the mirror at you every day!

You may be unpopular. You may feel alone. But you are an activist, so that’s par for the course. And my friend reminded me of a great quote, by Edmund Burke:

‘The only thing necessary for evil to triumph is for good men to say nothing’.

I’d choose activism over evil any day. Wouldn’t you?