The road I have taken as a disability and mental health activist since October 2010 has been a life-changing journey. I am reflecting especially on the pain of ‘lessons learned the hard way’ and much of it recently.
In December of last year I had the opportunity to write a guest post UKUncut, Disabled Activists and the Anti-Cuts Movement on behalf of The Broken of Britain. The anonymous student I had been corresponding with at the time wanted to know how the broader movement could engage with the disabled community. Uncharacteristically, I didn’t have a sharp, straightforward riposte. In hindsight that was undoubtedly a very good thing. Fortunately (or not, depending on how you merit the piece in question) I wasn’t short of inspiration, in the form of author J.K. Rowling and her wonderful Harry Potter series..
There are several things that stand out for me from that post as we move further into August 2011:
“It is a double-edge sword for us – standing up for ourselves, so to speak, by participating in protests typically elicits the salvo “if you can manage that then you are fit to work” or even worse “you asked for trouble just by participating”.
“We are made to hold account for our unenviable predicament by the society which victimises us. Many disabled people hold back from activism because they are afraid of taking the risk and then having it used against them. “
“It is our choices my friends, that show what we truly are, far more than our abilities.”
“For those that care to, it is easy to engage with disabled people; all that is required is communication. Yes, we will have missteps along the way and on both sides.”
“We are only as strong as we are united, as weak as we are divided. All who are not in the decidedly comfortable position of an assured future must work together bound by the fears which concern us all. It is imperative that we fight, fight again and keep on fighting – for only then can the underhanded be kept at bay, though never quite eradicate.”
It’s no secret that like every other type of “community”, those of us who are disabled also have ups-and-downs with each other over matters big and small and even insignificant in the scheme of things. Part of the problem with being on the internet and not knowing people, it’s all too easy to make a judgement – and to get it wrong. I’ve seen this in all manner of situations in my 20+ years of internet access professionally and personally. I put my hand up to claim responsibility for messes I have made especially where unintentional.
I’m 45 years old and I can still get things horribly wrong. With the heady pressures and criticisms facing us all on a daily basis from government, to media and even family and friends, the worst possible thing that can happen is that we in the disabled community fall out with each other. It’s important for each of us to feel safe with sharing who we are with relative strangers across the ether. We also have a responsibility to ourselves and each other to agree to disagree civilly where we can’t reach consensus and rise above our personal differences as we work on our shared goals. What we have in common is far more than what separates us. A movement divided will always be defeated.
Someone said to me today, “Everything you said shows your passion.” True, but it should never be at the expense of hurting someone. Even a passionate nature driven by good intentions needs careful consideration. In “The Last Lecture”, the late Randy Pausch said “Wait long enough and people will surprise and impress. When you’re pissed off at someone and you’re angry at them, you just haven’t given them enough time. Just give them a little more time and they almost always will impress you.” He was absolutely right when he said this and “Time is all you have and you may find one day that you have less than you think.”
I tried to end my UKUncut article on a personal high note saying,
“the only good thing that keeps me holding on is the fierce determination of those whom I work alongside. It is a great privilege to fight a good and just fight with people whose entire lives have included coping with chronic illness far more admirably than I have in my situation in the past year.”
I was speaking specifically about my colleagues at The Broken of Britain. Even with the catastrophic mistakes and disagreements I personally caused via social media now being made known to me – I still stand 100% by that upon reflection. The core team, affiliate groups and supporters really are a fine bunch of people; truly gifted, dedicated and with hearts of gold. All of us have two important things in common (1) we are very courageous and passionate about making our voices heard, and (2) we all want the right things for the right reasons. It really says a lot to me that people who have so much that they are struggling with can still reach out and help others.
“We cannot change the cards we are dealt,” said Mr. Pausch. “…just how we play the hand.” I realise that for all the pain of my former able-bodied life, I am still mourning the loss of it and hating the constant reminders of daily life now that I can never have it back. Despite my myriad of insecurities, I was able to get a little something back of the old me that was useful once-upon-a-time. I was given a platform to not only help others, but to help me help myself – something I have never been particularly good at. I don’t know what my future holds, but I am glad that I was able to contribute to the success that TBofB has achieved thus far despite the problems of my personal life.
Navigating the heady environs of politics and the internet is rather like an art form. I can only offer my deepest apologies. Whatever my mistakes have been along the way, I do sincerely hope that it is me, and only me, that is judged and held to account them and not anyone else.