Week 13: Does awareness raising go far enough? #LDWeek15 #107days

Today we find ourselves in the middle of Learning Disability Week 2015 #LDWeek15. We thought we’d use Week 13 to ask a question which many seem very uncomfortable with, are charities part of the problem? We’re starting off with questioning awareness raising.

So, what is Learning Disability Week I hear you ask?
It’s an awareness week run by Mencap, who simultaneously advertise themselves as ‘the UK’s leading learning disability charity’ and ‘the voice of learning disability’. Quite some accolade to give yourself, and quite a claim to live up to.

Each year for Learning Disability Week Mencap pick a theme for the week and seek to ‘raise awareness’ of the issue in hand. The week has traditionally been in June, although there was a slight detour into August in 2013, but business as usual returned in 2014.

What does LD Week focus on?
Each of the issues that feature in LDWeek are an existing Mencap campaign or priority, so if you were to take a cynical view one perspective could be that they are using a national awareness raising week to raise the profile of their organisation and do work they’re committed to doing anyway. Regardless of that, let’s take a look at the focus for the last few years:

2009 saw a focus on accessible toilets and Changing Places

2010 was equal healthcare and ‘Getting it right’

2011 turned the spotlight on Disability Hate Crime

2012 stuck with Hate Crime; perhaps there was a delay in planning, or no other issues that needed attention given toilets and healthcare were ‘done’.

The CEO at the time stated: “The reason we went back to the issue this year, is because we’re making good progress,” he explained. “We’re making great progress on working with the police in a way that will lead to a steady reduction of hate crime and a tackling of the perpetrators. There’s much more to do, though”.

2013 took a slightly surreal turn about, where presumably having sorted hate crime, healthcare and toilets it was time to celebrate. The August week focused on, wait for it, superheroes!

Who is your superhero? Celebrating families ‘amazing, brave and selfless people’. Which is an interesting way to frame learning disabled people and their family members! We’ll come back to that later.

2014 stuck with a theme of celebration, after all there were obviously no burning issues that needed raising awareness of in these two years.

The billing for the week asked: Do you remember your first? We asked you to celebrate people overcoming adversity, and people’s prejudice and ignorance to experience their incredible firsts.

2015 Bringing us up to date, this year the tone is less party and more traditional with a focus on Hear My Voice and listening:

We’re reaching out to the newly-elected politicians and people in a powerful position to tackle the myths and misconceptions about learning disability that fuel prejudice and inequality.

What format do these awareness raising weeks take?
A quick search on the internet will provide you with a range of approaches to raising awareness during LDWeek, with some grassroots activity across the UK.

That said there is also a bit of a format at play, whereby every year Mencap Head Office beam with pride as they celebrate the success of learning disability week (usually by the Friday on their website or early the next calendar week) that involves:

a) a London launch event or soiree at Westminster
b) a few mentions in the media
c) a new film or media soundbyte to use
d) some airy celebrity promises of support
e) a Charter or commitment for people to sign up to.

Anyone with a rudimentary knowledge of measuring impact would be able to see that these blogs ‘celebrating success’ are focused purely on activity and not on impact or outcomes.

The other consideration is positioning; what message is being shared about learning disabled people and their lives? Are we celebrating them as superheroes? Really? I’ve yet to meet a superhero, learning disabled or otherwise. Are learning disabled people and their families brave, overcoming adversity, pioneering?

Or are they just like you and I. Human beings, wanting human rights. No more, no less.

A question of impact
So all of this activity leads to what exactly? It’s not for us to offer an answer, we’re simply asking the question, but we would like to hear about the impact of such a large amount of focus.

While it is no doubt reassuring to the senior management team to tick a box on the annual strategic plan, and external profile raising never goes a miss, one can’t help but wonder whether all this talk and awareness raising leads to very little change.

Eddie S talk patch

Later this week we’ll take a look at charity accounts and some of the positioning of charitable activity. All thoughts and contributions very welcome as ever, drop us an email if you’d like to blog on this.

Day 106: Talking and remembering #107days

Today, our penultimate day, is shared between Laurie and Sara’s colleagues, Jo, Adam and Luis, at Healthtalkonline.

Laurie is a 53 year-old person with Asperger’s syndrome. Connor’s death had a profound impact on her life because she is, herself, the parent of children on the autism spectrum.

Laurie wasn’t diagnosed until January 2006, but she had this to say, “it [being diagnosed with Asperger’s syndrome] has changed my life. I immediately started educating myself on autism and the Asperger’s side of it and getting involved with autism research. It’s how I met Sara”.

Laurie was interviewed by Sara, in September 2007, for the Healthtalkonline series of interviews, she recalls:

She let me give her a lift back to the train station, I’d been involved with care services since I was 9 and wasn’t used to being treated like a human being. Just because we’re on the receiving end of ‘help’ doesn’t mean we cannot, at the same time, give something in return.

Out of curiosity, I asked Sara what made her so interested in autism and it was in that short car journey Sara told her about her son, who was autistic, LB.

Laurie volunteered to write a blogpost for Day 106, that she’ll publish on her own blog too and she is asking for donations for LB’s Fighting Fund for her birthday.

It’s my birthday today; or, at least, should be. Providing this story gets published on the right day after being completed and submitted in a timely manner, it ought to be July 3rd. If it is, then well done all of us for coordinating everything to such sweet perfection. If not, well, there’s always another year. At least we like to think so. Birthdays have always been rather more significant than Christmas, for me, never having been a lover of the melee surrounding such a communal festival. While we may share our special day with several million other people around the world, we do not know most of them and, unless we are one of a multiple birth, will probably be the only person in the family celebrating their personal ageing process that day.

Do others tie global dates and events to things we can pin to our personal experiences? Like remembering what we were doing when JFK was shot. Bit before my time but you get the point. Where were you when you heard about Elvis? And how did you first hear the news of Princess Diana’s terrible car accident or the Twin Towers ‘tragedy’? What is it that makes me remember November 14, 1972 as the day Princess Anne married Captain Mark Philips? Heaven’s sake. That their wedding day fell on Prince Charles’ birthday? Why would anyone outside the immediate family remember that in the first place? Maybe my brother had a point when he said I was always good at remembering dates, which was astonishing news. How could I possibly be good at something I forgot most of?

Days and dates and measurables are important, very often, to people on the autistic spectrum and I am pretty typical in that aspect. This year, on the day before the first anniversary of Connor’s death will no doubt see it adding a lot of reflection on life, death and the passing of time. I will be thinking back to how I spent the day on July 3 last year. What were you doing? I cannot remember. Some birthdays are more memorable than others.

There is a Biblical proverb which says: For to him that is joined to all the living there is hope; for a living dog is better than a dead lion. (Ecclesiastes 9:4, JPS 1917 ed). None of us wishes to be old, although many have longed for the wisdom acquired by years to have been more evident in our youth.

As the 107 days has passed and we have, together, counted them, a personal image has grown in my head, brought back from a dusty recess of a childhood memory and a visit to old Mrs Abbot. It was almost forty years ago and shortly after Christmas. Let me take you there.

There’s a clock standing in a dark wood panelled hall; a grandfather clock, standing to the left, set there by Old Father Tyme himself, surely. A dusty Persian runner stretches from one end of the polished floor to the other. Behind each door lurks a terrifying secret; maybe a monster ready to leap out and interrupt the sound of the languid tick (breathe) tick (breathe) tick (breathe) as its pendulum ambles from one side of the clock’s glass door to the other, hypnotising the dark Victorian house into submissive torpor. Maybe the door to the right will slowly creak open to allow a bent old hag to shuffle through on her slowly unwinding mortal coil? Perhaps the incumbent ghost is about to roll in from underneath the cellar door, like a sticky fog to rise up to the ceiling before stealing the souls of the petrified child shivering with fear in the gloom?  Words from Shakespeare grow like creeping ivy across the memory.

Tomorrow and tomorrow and tomorrow creeps in this petty pace from day to day, 

the clock ticks and breathes. Old Father Tyme stands at the door.

To the last syllable of recorded time;

and all our yesterdays have lighted fools the way to dusty death.

Out, out brief candle!

Life’s but a walking shadow, (Macbeth, 5:5:19-25)

Terrified, the frozen child stands like alabaster, hypnotised by the minute hand defying gravity to reach the top of the hour and chime.

This year, I will spend much of my birthday thinking about a remarkable young man I was never privileged to meet and whose family, no doubt, be thinking back one year to the last time life had some kind of ‘normal’ attached to it. To his family, I extend a Jewish traditional greeting on the death of a loved one and wish you all ‘long life’. May the memory of Connor, your lion, your Laughing Boy, remain in your hearts forever with the certainty the shadow of his life never leaves you.

Laurie was being interviewed by Sara for Healthtalkonline. Today is also shared by her team of colleagues and this is why:

As friends and colleagues of Sara, the Healthtalkonline team have all participated in the #107days campaign individually with contributions including music, sewing skills and a guided tour of London. But we wanted to contribute as a charity too.

For those who don’t know, Healthtalkonline is a charity website that provides health information in the form of people’s experiences. We do this by interviewing people on film about their experiences of health issues and making the videos available on the website. The interviews are carried out (and the data analysed) by researchers from Sara’s research group, The Health Experiences Research Group (HERG) at Oxford.

Sara has worked with HERG and the charity since 2006 and is responsible for our Autism and Learning disability health sections. In fact we share today with Laurie who contributed her story to Sara’s Autism experiences project. Although separate, the two organisations have been closely intertwined from the time we were founded over 13 years ago and have shared an office for almost a decade.

The charity and research team were all together in the office on the day Connor died, in shock and in tears for our dear colleague’s beloved son. The day before this, in a sad twist of …something (for which we cannot find a word), Sara agreed to be interviewed about Connor so that a member of the team, Sophie, could practise her interview skills for another Healthtalkonline project. This interview was never meant to be made publicly available but in the days following Connor’s death, it became a valuable memento for his family.

We could think of no more fitting way for us to take part than by adopting day 106, exactly 1 year after it took place, to share this interview (with Sara’s permission) on Healthtalkonline. We’ve divided the film into 4 parts:

Sara talking about Connor and what a dude he was

Sara and Connor’s journey to diagnosis

What Sara had to say about accessing decent support for Connor, something that proved difficult throughout his life, long before he went into the unit

Sara talking about her blog, which has become a bit of a phenomenon, and the value of social media

In editing these videos it occurred to us that this will be the first time many followers of the JusticeforLB campaign have heard Sara speak or even seen what she looks like. Many people may not know what life was like for Sara’s family before Connor went into the unit.

By putting a face and voice to the name, we hope these videos will add a new dimension to the story and a chance to say again what made Connor great and how loved he was.