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.

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 34: What sociological imagination? #107days

Day 34 was adopted by LB’s Mum, Sara, who is presenting at the postgrad pre-event for #BritSoc14. She has this to say:

Today I’m off to Leeds, to take part in a pre-conference event before the British Sociological Association Annual Conference. This is a bit of funny event for me. If someone had told me 10 years ago that I’d be invited, I’d have fallen off my chair with disbelief.

I loved sociology from my A level lessons back in Essex in 1981 when our teacher was off campaigning at Greenham Common more than teaching us. When she was there, she was an inspiration. In her absence we had a locum who was pretty underwhelming. She kind of lost the attention of the class of 17 year olds when she talked about ‘orgies’ using a hard ‘g’. But it didn’t matter. Delight and interest was ignited.

It was more than 10 years before I returned to university at Oxford Brookes to study sociology and anthropology as a mature student. At the same time LB, as a pup, was in the process of being diagnosed as “different” in a problematic way. I was able to make some sense of the way in which he was treated as ‘unacceptable’ or ‘other’ through the course, and the work of people like Erving Goffman, Robert Bogdan and Spencer Cahill.  I went from Brookes to Warwick to do a PhD under the informed, thoughtful, creative and humorous supervision of Janet Read. Another inspiration. This was, again, a pleasure. Of reading and immersing myself in writing and research around disability, difference and public interactions. Of mothering and disability studies.

I landed my first full time academic post in 2007, brimming with blinking optimism and a firm belief that robust research could inform change.

This optimism began to be dented in recent years when faced with the divergence between policy talk/evidence and what LB was experiencing in terms of support, encouragement and an imagined future. Basically all talk and no action. An extension of what he (and we) had experienced since diagnosis but worse, because it was about his future.

Pah. C’mon sociological community, I thought. Step up. Whatchadoing?

Not an awful lot really. A wealth of brilliant research conducted by the likes of the Tizard Centre, the Norah Fry Research Centre, the Centre for Disability Research and other drops of brilliance* dotted around various universities but also pretty much silence when it came to more mainstream sociological engagement with ‘learning disabled’ people. A year or so ago I contacted the BSA about setting up a Disability Study Group. ‘Ain’t we got one?’ was the puzzled response. There are numerous study groups for pretty much every topic under the sun. A search back through BSA records confirmed that there had never been one.

Wow. A discipline that is, or should be, about understanding the social. Engaging with different forms, shapes, spaces, emotions and embodiment. Examining social issues and making visible underlying structures and enduring inequalities… Disability, and particularly learning disability? Forget it.

So I’m trekking up to Leeds. To chat with postgraduate students and ask them why they think learning disabled people are ignored/marginalised in sociological research. And to reflect on whether we ain’t very good sociologists or whether the discipline is part of the problem.

So, a funny event. And one I’m dedicating to LB. If it wasn’t for him, I wouldn’t be going. Or asking these questions.

Day 12: Spreading the word to Healthwatch #107days

Day 12 has been adopted by Beth Gregson who is focusing on bringing #JusticeforLB to the attention of Healthwatch. Here’s why:

As chair of a Healthwatch I am constantly trying to work out what we focus on, there is so much work to do it can feel overwhelming. Do we focus solely on the concerns raised with us by local residents, or do we align our work with local strategies?

The problem with either of those ideas is that people with learning disabilities are often the least heard and are rarely asked, we are very unlikely to hear about concerns unless we actively go out and ask. It’s a bit chicken and egg. Which is why I feel so strongly that healthwatch, as a national network, has a role to play in asking what is happening to our young dudes and what would a national picture look like?

Beth believes that members of Healthwatch are in a unique position, as our role is to champion consumer voice, to gather views and articulate them. Therefore the question of what does good look like, needs addressing.

I am passionate about working towards real co-production of services, and reading the story of LB it hit me hard, both as a mum and a Chair. I asked myself what I could do. Today I am attending a national chairs meeting. While there is no set agenda, I plan to have a conversation, to suggest we respond to the #JusticeforLB manifesto and also to Lord Hardie’s report on Deprivation of Liberty Safeguards and the Mental Capacity Act.

As a national network, I think we have a responsibility to respond to a report like that. To find out about peoples lives, gather the lived expereinces so we can add to the picture and use it both locally and nationally to influence policy.

Beth hopes to raise the profile of what is happening in terms of support for people with learning disabilities with her fellow chairs from across the country. This awareness raising, and bringing the issue to the front of people’s minds, is key to the #107days campaign. Last word goes to Beth, and could be equally asked of many of us as we go about our daily business:

What are we here for if it is not to speak up for those who are rarely listened to? It is not simply about giving people a voice, it’s about supporting others to listen to what’s being said.

Day 4: 107 lessons from dudes and dudettes #107days

One of the most encouraging things that has already happened as a result of #JusticeforLB is the number of new online voices. We know of at least three new blogs and many more twitter accounts that have been established to join the conversation around #JusticeforLB and some specifically as a result of #107days. For anyone who doesn’t blog I think its fair to say that for some it is a rather hard hurdle to jump initially. Who is going to read it? What if people don’t like it? Why would anyone care about what I have to say? Well let me reassure you if you’re considering it, every voice is valuable and the internet is a truly brilliant way to connect with others, who are genuinely interested in your experience and views, and if they aren’t they’ll not hang around, but that’s ok too. Not saying anything means you play it safe, but your voice isn’t heard. A real loss, everyone has something worth saying.

Some of these new online voices are sharing, quite brilliantly already, experiences and wisdom gleaned from many years working with, living with or sharing lives with dudes and dudettes. One of these new voices is Wise Grannie, you can connect with her on twitter @WiseGrannie or read her blog http://WiseGrannie.wordpress.com.

WiseGrannie describes herself as:

Possibly made every mistake in the book as teacher, mother, daughter, wife, trainer, friend, carer and colleague, but I did try to be kind.

and gives her reason for blogging as:

Hoping to help Justice for LB by blogging the good, funny and surprising things I learnt from all the young Dudes and Dudettes I foolishly imagined I was teaching (long ago when the world was young).

WiseGrannie has committed to blogging a story a day and so far she has had us roaring with laughter and sniffling back a few tears, they are definitely worth a read. Start here for her first post that provides context: To begin at the beginning. Can’t wait to see what more she has to share.