Week 4: The Art and the Politics of Listening and Not Listening to Families #107days

Our final blog post this week, on listening or non-listening to families, parents and disabled people comes from Mark Brown:

We don’t realise it but we – the families of children and young adults and adults with learning difficulties are immensely powerful. For decades now our stories have been used to shape aspects of health education and social care policy and with it the lives of tens if not hundreds of thousands. And with those stories and those policies have gone budgets of hundreds of millions of pounds and the jobs and livelihoods of a significant sector of the health, education and social care economy.
For me the problem isn’t always that we aren’t being listened to – it’s that once we have spoken – our stories and experiences are increasingly being manipulated, miss-used and appropriated. It happens to us as individuals and it happens to us as a community. The art of listening and not listening to families has become a significant weapon in the macro and micro-politics of power and we are subject to it as individuals and as a community. I’ll start with how we are listened to as individual families.

Listening and not listening to Individual Families
One of the first things that may happen to us, is that the practitioner or organisation concerned will decide if you are somebody who should or needs to be listened to, or if your opinions can be thrown onto the can be dismissed pile. I’ll come back to the can be dismissed pile a bit later. But if your opinion survives the initial assessment, a decision will then be made about whether your opinion is problematic or useful.

Useful opinions are those that make no additional demands on services. They can be especially useful if they can be used as evidence of what a good service is being provided. Whereas problematic opinions are those that have to be listened to but which demand a level, or approach to service provision that requires additional or atypical resources.

How these problematic opinions are dealt with will depend upon the ethos and expertise of the provider. The better the provider the more they will be able to deploy their resources flexibly and the more Person Centred their approach is likely to be. This kind of service provider or commissioner exists, in fact there are lots of them but the more financial pressure providers come under, the more difficult it becomes to deliver a genuinely person centred approach.

In my opinion providers who are unable to maintain or who have never had, a particularly Person or Family Centred Approach will probably begin to adopt strategies that will allow them marginalise the family. Allowing them to caste their views into the can be dismissed pile. Practitioners have a range of tools at their disposal that allow them to dismiss the views of family members and the Mental Capacity Act has become a particularly useful way of dealing with problematic family members. But it isn’t confined to that.

For those with younger children one of the most effective ways of dismissing the opinions of families was to assert that a parent had failed to adjust to their child’s diagnosis or disability. Parental demands for additional or specialist support – beyond that which was being offered – were clear evidence that a parent hadn’t yet come to terms with a diagnosis. This is seen as particularly in the case of family members who have demanded expensive out of area provision or really outrageous things like – speech therapy. Fortunately the SEND Tribunal and the Courts haven’t always agreed.

But the broader problem is that the consequence of not listening to the views of families isn’t just that a child, young person or adult may not get the speech therapy they need. The problem is that they may not get the support they need when taking a bath. They may not get the support they need to be able to manage their behaviour well enough to be able to keep themselves within their community, and then of course they may not even get the healthcare they need to keep them alive.

Listening and not listening to our community
But the Art of Listening and Not Listening is not just confined to us as individual families. We are listened and not listened to as a community. For generations learning disability was excluded from our society and it wasn’t until the post war period that things began to change at all. As for the voice of families in my opinion this didn’t really begin until Caroline Glendinning wrote Unshared Care: Parents and their Disabled Children in 1983. In the years after that York and a number of other Universities, working in partnership with the Joseph Rowntree Foundation, conducted a stream of research which genuinely listened to the voices of families. At first the focus was on the “burden” of care but with an increasing acknowledgement of the rights of disabled people, the focus turned to the creative ways in which families sought to overcome their challenges in a way that was positive and inclusive. Bryony Beresford’s Positively Parents is an excellent example of how researchers have been able to listen to and represent the voices of families not only as the carers of their children but also as their champions.

Through the late nineties and well into the first decade of the 21st Century, researchers and a good number of practitioners displayed a genuine commitment to representing the voices of families and adults with leaning difficulties. It was a genuine attempt to transform the lives of people with learning difficulties regardless of their age. Eventually this research paid off and in my opinion initiatives like Valuing People, Early Support and Aiming High for Disabled Children reflected some of the positive outcomes that listening to the voices of people with learning difficulties and to their families were able to bring.

The ethos of this process was carried into the work that the current government put into The Care Act 2014 and the Children and Families Act 2014. Families and adults with learning difficulties have been closely involved in both but I believe there is a fundamental difference in the way in which the voices of families in particular have been listened to and used. Whilst far from perfect the policy developed out of the research carried out in the late nineties and early 21st Century, genuinely used people’s experiences and opinions to inform policy development and implementation. In contrast to this the Children and Families Act in particular, has used the experiences of some families far more than those of others and as a result the policy has been skewed toward the interests of those groups within our community who were more active and whose entitlements the government felt more inclined to support.

Well that’s my opinion and we won’t really know if I’m right until we’ve had a decade of children being excluded from schools and of adults not getting the support they are entitled to because the Care Act hasn’t been adequately funded. The problem is that even then we will struggle to know, because most of the people who aren’t getting a decent service or who challenge the practice of providers – will have had their opinions placed upon the can be dismissed pile and the Art and the Politics of listening and not listening to families will have come full circle and the family that can be dismissed has become a community that can be divided, marginalised and discarded.

But it doesn’t have to be like this….

MarkL

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.

Day 104: Voices to be heard #107days

Today is another three way share, this time between Sunnyside Rural Trust, Bringing Us Together, and inControl.

First up, Sunnyside Rural Trust who adopted today to share a report of the celebration and launch (yesterday) of a special and innovative Memorial Garden. The garden, which is a physical representation of the poems collected in The Memoir Garden, has been created as a place for remembrance.

A group of 18 trainees from Sunnyside Rural Trust, who all have learning disabilities, worked with local author Emma Claire Sweeney. She explored their reminiscences and collaborated with each one to produce a poem. The resulting book, The Memoir Garden, was well received both by literary critics and by the learning disability community.

Day104Garden1

The participants valued this all too rare validation of their experiences. At the launch, Roxy Simmons, one of the 18, read a speech prepared by the group, saying “We thought it was important for people to understand about our lives. We don’t want people to think that we are thick. We want people to know that we have the same feelings, relationships, and experiences as everyone else. We will maintain the garden together as a place of peace and quiet where we can sit and reminisce. In particular, this is a space where we will remember our old friend’s Leon and Marie”.

Day104Garden2

The garden was completed within 107 days to support the #JusticeforLB #107days campaign. The work on the garden has been carried out by the team at the Activity Centre along with volunteering help from Berkhamsted Waitrose. Painted glass bottles, depicting images from each poem along with the poet’s names, hang from the trees. The garden’s centrepiece, a wooden sculpture of a book, was unveiled at the launch. The sculpture is engraved with the words ‘Voices to be heard’.

You can read the full press release from the event yesterday here. Next up, Bringing Us Together:

The #JusticeforLB campaign highlights our fears as parents. It has had a profound impact on many of us and has brought us together as we reflect, feel emotional and share our fears. Each of us knows that this could happen to our own son or daughter.

We are fearful that our young people’s voice will be lost, that they will not be listened to and that we, the people who love them the most, will be left out of vital decision making. We have huge concerns about the following questions:

  • What happens to our young people when we are dead or no longer able to look after them ourselves?
  • How do we keep them strong and supported to make decisions that have a huge impact on their lives?
  • How do we keep our young people safe as they grow up into a world that is full of prejudice, fear, abuse and discrimination?
  • How do we keep their voice at the centre of all planning and decision making?
  • How do we convince others that our sons and daughters, whatever their level of impairment, have a voice that must be listened to if they are to be happy, strong and safe?

For many of us our years of involvement and knowledge of our own children and the systems they encounter brings us a deep insight into our children’s well-being. We know what makes them happy, how they communicate and what support they need. We know what they are trying to say and we work hard at sharing that information with others.

However, only too often our understanding is ignored; our young people are misunderstood and problems arise. We want our young people and adults to be independent and safe. We want our children and young people to grow up knowing and feeling what it is like to be in the ‘driving seat’ and to understand the real power of making decisions, what good looks like, and what support they need to be part of their communities.

Our event to mark Day 104 of #107days of action for #JusticeforLB will give families the opportunity to come together to talk about and share stories of:

  • The madness of the system and what we can practically do amongst such madness
  • How can we make the system less mad? We will look at what is working and what is not working in the current system
  • How do we keep ourselves strong within the current madness?

Through telling our stories and using positive ways that families have used it plus ways in which it has been abused will enable families to learn from one another.

The event is a collaboration between The Cameron Trust, Bringing Us Together and the Centre for Welfare Reform.

Last, but by no means least, is In Control:

For the past eight years, In Control has been working with a growing number of services, children, young people and families. Although this work often focuses on the systems needed to make personal budgets work, the real drive to this work is ensuring good support for all children and young people, and the recognition that some may need more support than others. We never loose sight of what this is really about…valuing and cherishing every child’s right to aspire, learn, enjoy and take part in the life of their family and local community in ways that make sense to them, and for families to get the support they need to provide a healthy, happy and nurturing home for their children.

The experience of LB and his family is one of many recent reminders that we, somewhere along the line have a gone a bit off track, have forgotten why we are supporting children and young people and have ended up with systems and support that lead to tragedies like those of LB and his family. We are starting our day (Day 104), chaired by Miro Griffiths, with a presentation by two parents, Nikki and Tricia. Nikki Delgarno, mum of Ethan, and Tricia Nicoll, mum of Ella and Cieran, both share a powerful story of the challenges of the system and the resilience needed to keep going.

But what does the future hold for Ethan, Ella and Cieran? With over 100 people from children’s services, including many parents, we have a chance to discuss and set out how we can change the future for these and many other children and young people, for us and the community we work with every day. Day 104 is an opportunity to step towards ending such experiences as those of LB and his family, of Josh and his family in Cornwall, of Nico and many others.

Following Nikki, Tricia and a group discussion we will be hearing from those involved in leading the Winterbourne programme and from Action for Children who will share a great example of what is possible if everyone commits to working together and supporting a child and their family. We will share presentations and notes from the whole morning and as suggested by #JusticeforLB we will be asking everyone to commit to taking one action which will make a difference for children and young people they know.

With so much awesome happening today, we’re feeling ever more confident that #JusticeforLB really will result in improvements for all dudes. Thank you all.

Day 75: Pockets of peace #107days

Today was adopted by Louise, a friend and colleague of Sara’s. This is why she wanted to support #107days and #JusticeforLB and what she is doing:

I adopted today to take Sara out to do something nice – nothing about the campaign, nothing about work (we are colleagues) – but just a bit of a treat.

Any of you who read Sara’s blog will know what a toll this has taken on her, and how in the midst of coping with personal grief she has been thrust into a role as a highly effective but reluctant campaigner. She deserves a break.

Sara and I used to chat a lot about parenthood and our kids as they moved towards adulthood. Sara’s daughter and my older son did their A levels at the same time, so we compared notes over exams, university choices, student loans – and about how on earth we’d feel when they left home. How could our babies possibly be old enough all of a sudden to make all their own choices and be responsible for running their lives? What changed so dramatically overnight on their 18th birthday to make us redundant? I remember talking about the way the term ‘helicopter parent’ is used to ridicule parents who can’t let go, and agreeing that maybe it was all a bit more complicated than that.

Of course we cried when our firstborns left – and of course over time we discovered it wasn’t quite such a separation as we feared. They ring up for advice, they come home for holidays and leave their laundry lying around, they ask for money; we ask them about their new lives (and sometimes they tell us), we remind them about stuff, we still ask them to do the washing up. It’s not a sharp divide between dependence and independence at 18, but a gradual handing over of freedom and responsibility over many years, all the while providing the safe backstop of parental love, interest and concern.

And then we got to talking about the next two kids approaching the cliff-edge of 18 – LB and my younger son. The same age, but with such different prospects. While my son followed his big brother to university, Sara has blogged about the lack of an ‘imagined future’ for LB. Long before he was admitted to The Unit, she was anxious about the absence of meaningful opportunities for him when he left school, but determined she would find something. Then came The Unit, and the stripping away of all aspiration, meaningful activity, and responsibility to do something productive. Replaced with vacuous ‘choices’ to do nothing and a cruel version of ‘autonomy’ in which Sara – who had loved and looked after him with inadequate support for 18 years – was cut out of decision-making. Worse, she was labelled as a pathological ‘helicopter parent’, part of the problem preventing LB from being an independent adult.

Of course we have to preserve individual rights for people with disabilities, of course we do. And the relationship between young people and their parents is often complex and sometimes damaging. But here’s the irony. While my sons and LB’s big sister were feeling their way gradually towards adulthood with family support along safe, well-trodden roads, LB – the one with less mental capacity and adult competence – was bundled sharply into it with no map and no guide. It feels, to paraphrase Thatcher, as if care services believe ‘there’s no such thing as family’. To exclude all parents as a matter of routine is surely wasteful of all the care and understanding they can bring, as well as tough for us parents.

So today is a day to think about Sara and all the rest of the family, and reflect on their needs and what this has done to them. We can’t make it right again, but we can try to create little pockets of peace and relaxation to lessen the pain for a short while.

LBforDay32

Day 60: 107 red balloons #107days

Day 60 was adopted by Beck from Frog Orange. At 3pm this afternoon everyone is welcome to join them at Shotover (at the top by the car park) to release 107 red balloons in memory of LB. Here’s what Beck had to say about why she wanted to support #JusticeforLB and the #107days campaign:

I wanted to adopt a day as part of the #JusticeforLB campaign for a number of reasons. I started reading Sara’s blog a few months before Connor was admitted to the treatment and assessment unit. I enjoyed Sara’s writing, her photography, her sense of humour.

I enjoyed reading about her musings about her family life and the little community we share. It was the only blog I ever requested to have emailed to my inbox. Naturally after Connor was admitted some of Sara’s entries made for really tough reading. I’ll never forget reading the few words she wrote on July 4th 2013. The horror, sickness and sadness I felt was so powerful.

I can not imagine the pain that Connor’s family and buddies are going through.

I was appalled by the non care that Connor received.

I was astonished how Sara and her family were treated during his stay.

I was horrified that Connor was allowed and left to drown in these circumstances.

And I have been disgusted by the way NHS Southern Health have behaved since.

I know Sara and Rich a little, we’ve hung out socially a few times and they have been customers (at Frog Orange) for years. Rich used to come in with Connor, his brothers and sister. He used to carefully herd them around the shop helping them spend their Christmas money.

One of the main reasons for taking part in this campaign is because if you know Sara and Rich at all, you know what utterly fabulous parents they are. They are just so bloody good at the whole parenting thing. It is just TOO cruel that they cared so well for Connor along with his brothers and sister, and within 107 days in the unit, he was gone.

So why balloons? Well, I don’t write a blog that anyone reads and so many wonderful people have written such powerful pieces in defence of Connor and his family. I thought maybe something visual would be good. A little time out in the fresh air thinking about the sunshine that LB brought to his family and friends. And if somebody finds a tag with #107days #JusticeforLB they might google it and spread the word. Let’s hope so.

Day60_107redballoons

Just to be completely transparent (it’s a style we’re deeply committed to), we had a comment on our post and facebook page from Vicky who was worried about the environmental impact of releasing balloons. It is something we have considered, and decided the risks are worth taking, you can read the discussion here.

Please do come along if you’re in the Oxford area and would like to join us and please do share any photos on twitter with the #JusticeforLB and #107days hashtags. Thank you.

Postscript

The super talented Izzi Crowther decided to produce an adaptation of Nena’s 99 red balloons for LB. So much love and so much awesome, here’s to the dude:

You and I, and the Frog Orange shop
Buy a bag of balloons with the love we’ve got
Set them free at 3 o’clock
‘Til one by one, they were gone…

One-oh-seven red balloons
Floating in the summer sky
Connor Co’s aerobus fleet
Go tell everyone you meet

One-oh-seven Shotover Park
One-oh-seven dogs will bark
Lorry lorry super-scurry
Call the troops out in a hurry

One-oh-seven knights of the air
Riding super high-tech jet fighters
LB is a super hero
LB is like Captain Kirk

With orders to identify, to clarify and classify
Scrambling in the summer sky
As 107 balloons go by
107 red balloons go by

107 dreams we’ve had
Every one a red balloon
It’s all over and we’re standin’ pretty
Overlooking Connor’s city

If I could find a souvenir
Just to prove LB was here
And here is a red balloon
I think of you and let it go