I’ve been using Twitter to communicate, to share, to think, reflect and learn, in one way or another for almost eight years. I joined on 8 September 2008 following an absolutely amazing weekend at the Do Lectures. You can find out when you joined if you’re interested by checking TwBirthday here, and you should definitely take some time to check out the Do Lectures back catalogue if you’ve not seen any of them before. They state on their website People are different. Tuned different. We have to strike different chords to make our dreams sing. I’ll come back to that in a bit.
It’s three weeks since my appearance on the Victoria Derbyshire show, and I’m still only really getting past some of the fall-out as a response. My last post talked about why I ended up on the show and what I said, I’ll not repeat that, but the fall-out has continued since I wrote that post. By far the most hurtful was the appearance of a blog post that inaccurately presents a version of events, where the author deleted my comment and told me to ‘go away’. I’m not linking to it here, the author has since accused JusticeforLB of being nihilistic, which if you’re interested is defined by google as ‘rejecting all religious and moral principles in the belief that life is meaningless‘. Bloody hell, about as far from what JusticeforLB looks like as any suggestion I’ve ever seen.
There is nothing about the JusticeforLB campaign that I see reflected in that accusation, it has always been about finding meaning in a needless death, in welcoming people whoever and however they presented themselves, in crowdsourcing, sharing and developing in response to what people wanted. The 107days campaign that kickstarted JusticeforLB was described as this:
#107days seeks to inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes. We want to harness the energy, support and outrage that has emerged in response to LB’s death and ensure that lasting changes and improvements are made
In fact the only rule we had was We would like the focus to be on positive actions. 107 wonderful, colourful days, and an amazing, collective, progressive, all welcome campaign that has followed since. The quilt, the films, the animations, the gingerbreads, the blogging, the fundraising – all in the same ilk. If JusticeforLB appears nihilistic, I can only conclude it’s because the person viewing it has such a glass is half empty take on life; that or their own agenda.
For the last two weeks I took this person’s advice and went away. Two weeks away from my personal twitter account for the first time in almost eight years. It was a very welcome break. Time to reflect and muse and time to recharge. I guess it’s human nature to focus on the negative and the personal attacks, but I’ve also forced myself to listen to those who have offered alternative interpretations, those who sent support, and those who encouraged me back. The people who inspired me the most in this decision to return were the team at Learning Disability England.
Last Tuesday I had the absolute pleasure of spending the afternoon at the House of Lords as Learning Disability England was launched, invited along to live tweet to those who weren’t there in person. A sopping wet day with plenty to dampen the spirit, the occasion was nothing short of joyous. A total breath of fresh air. Sara has shared her perspective:
On to the launch. And Learning Disability England. Guts, passion and punch also by the bucket full. A membership organisation for pretty much everyone (£12.00 a pop for membership for individuals), democratically run; e.g. no big decision will be made unless 1/3 of the vote is from learning disabled members… Wow. A wow moment that so shouldn’t wow in 2016. Underpinning principles; challenging, empowering, being creative and putting learning disabled people first. Wow…
and Jan Walmsley her’s:
It was an exceptionally showery June day in London when Learning Disability England was launched in the House of Lords. And what a tremendous event it was. Chaired by the inimitable Gary Bourlet, and attended by a fantastic number of self advocates (and others) from across the country. The message – we – self advocates, families and service providers – are stronger together. And boy, do we need that voice now.
Sara and Jan both commented on the absence of Mencap, the self-appointed voice of learning disability. They managed to not send a single tweet acknowledging or supporting Learning Disability England on their launch the entire day long; how’s that for the unity Dan Scorer was claiming was required?
What I witnessed last week was a genuine, true commitment, in fact more than that – a passion (a word I use very sparingly indeed) – to get things right. Gary Bourlet and Alicia Wood made a formidable double act.
All of those who took to the stage at the LDEngland launch struck a brilliant balance between the horror of life (and death) for many of those with a learning disability, and a commitment to improve things.
Life memberships were awarded to those who have inspired them on their journey to date, ten life memberships to the great and the good of the learning disability world. Not your usual suspects who achieve greatness with the benefit of an organisation, a salary and a PR team to do it, no ten learning disabled people who have lived the change we need to see, inspiring and challenging people along the way. They were also open and honest that for LDEngland to succeed it needs to consist of, actively engage and represent learning disabled people, families and professionals/organisations.
There is already an awareness that some groups will require creative solutions to ensure their voices are heard, and a healthy respect for the criticism and challenge of those who feel Gary and People First England sold out by joining together with families and professionals. If we want a more equal future though, one where learning disabled people are fully involved and fully at the centre, then this democratic organisation with a three way approach at the core of everything Learning Disability England will do, seems sensible to me.
After the excitement of the House of Lords we walked from Westminster to Waterloo, a short walk, twenty minutes or so, longer if you account for the snapping randoms with the LDEngland photo frame! In that 20mins I learned a little about Gary’s personal history and back story. One of the things that stuck with me was him sharing that his family were of Huguenot descent, why did this not surprise me.
“a combination of a Dutch and a German word. In the Dutch-speaking North of France, Bible students who gathered in each other’s houses to study secretly were called Huis Genooten (‘housemates’) while on the Swiss and German borders they were termed Eid Genossen, or ‘oath fellows,’ that is, persons bound to each other by an oath. Gallicised into ‘Huguenot’, often used deprecatingly, the word became, during two and a half centuries of terror and triumph, a badge of enduring honour and courage” (Roche quoted on wikipedia).
Honour and courage, that’s where Gary comes from, and I feel sure that it’s what Learning Disability England will come to embody. First thing Wednesday morning I joined up, it only costs £12 per year for individuals. Stronger, louder, together – that’s an oath I can support.
Then yesterday when I dipped my toe back into my twitter stream it was going wild because Gary had been on BBC Breakfast.
— LDE Self-Advocates (@LDEselfadvocate) June 19, 2016
Learning disabled people speaking for themselves, and the crucial difference, the media ready to listen. I look forward to the future, to the moment when it is routine for learning disabled people to be on the red sofa, not a Mencap or any other organisational representative, or a JusticeforLB one for that matter.
Two years ago when Sara and Rich were forced to think about what JusticeforLB would look like, their final bullet was this:
- Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society
Booooom. This week it feels we’re a step closer to that. At last, and not before time. I look forward to hearing different chords being played and different dreams being realised.