Week 4: Listening to families; the moon on a stick? #107days

We were delighted with the response to Katherine’s post on mother blaming yesterday and we continue Week 4 with a post from Sara:

On April 13 2013 I made a complaint to Sloven/OCC about the period of time leading up to LB’s admittance to STATT. My main complaint was Overall I felt my voice as a carer for LB was not listened to and as a result the seriousness of the situation was not appreciated. This complaint was largely dismissed by a Sloven internal review. Five weeks later I raised urgent concerns with STATT staff because LB had had a seizure. They’d noticed he’d bitten his tongue but hadn’t made the link with seizure activity. Six weeks later he was dead. [Howl]

I felt my voice as a carer for LB was not listened to and as a result the seriousness of the situation was not appreciated.

Person centred planning is (or should be) at the heart of social care provision (in the same way patient centred care should be central in healthcare), and techniques like Circles of Support are becoming more common. Families are a remarkable resource for health and social care staff. I wrote about this in an article to do with diagnosing autism a couple of years ago arguing that parents maybe the best resource in identifying autism. They typically understand and know their child/sibling/grandchild better than anyone. They love their child/ren and want the best for them. As Katherine writes, they want their child to have the same life chances as everyone else. But this love, expertise, knowledge and understanding is too often dismissed and ignored. Health and social care providers/staff appear to think they know better about the person they are supporting and families are portrayed as problematic.

Funnily enough, we don’t necessarily know we’re portrayed as unreasonable, or worse. It’s only on reading health or social care notes that this may become apparent. After Mark Neary raised concerns about Steven’s clothes disappearing, the social worker famously wrote There’s always something or other with Mr Neary… in an email to staff. Sally commented on my blog last week:

Blaming parents seems peculiar really and there seems to be little reflection on the part of these professionals to maybe reflect why Mark might want to know where Steven’s clothes are. Or why Sally turned down a particular service. Boxes of records and emails in the Justice shed recount my apparent hostility, refusal to accept the moon on a stick and general flakiness, positions inconsistent with other areas of my life that I seem to manage fine; bringing up LB’s sibs and working full time (although the kids might disagree).

Why aren’t families listened to?
I’ve tried to tease out some possible reasons below. These are early thoughts and there is quite a bit of overlap between the categories.

1. Basic humanity: If someone isn’t seen as fully human there’s no reason to bother to engage with family members. Much easier to just get on with the task at hand – containment at the lowest possible cost – and exclude pesky relatives who bang on about better care, missing clothes and the like.
2. Background: By the time the child reaches adulthood, families typically have experienced some fairly full on tough times in terms of accessing support across the years. Adulthood offers little certainty, no imagined future and deep concern about what will happen when parents are no longer around. Not understanding or recognising this background can too easily lead to exchanges that damage relationships between families and professionals.
3. Black hole of trust: Trust is essential (as it is in healthcare) to the provision of good and effective social care yet it seems to be absent from consideration by social care professionals and providers. Fear is probably the most common emotion I’ve encountered in families I know both personally and through work. The lack of engagement with trust flags up a disregard for the expertise and knowledge families have to offer.
4. Budgetary considerations: A lack of available resources/provision can mean that family expectations (that people will be supported to lead enriched lives) is so far out of reach that overstretched professionals don’t really want to listen to families. There are no options so it’s easier to ignore increasingly frazzled and concerned family members.
5. Moon on a stick: There can be a complete disconnect between what families and providers think good care looks like. Providers may think the care provided is good enough and families are unreasonable and/or difficult to turn it down or challenge it.
6. Capacity misunderstandings/misappropriation: The Mental Capacity Act can be used as a bit of a weapon against families. Partly (I think) because of misunderstandings around the workings of the act but also because it’s a handy tool to bash back concerned families and get on with the containment mentioned in 1.

That’s where I’m at right now but I realise this only scrapes the surface of an area that urgently needs attention. Any comments/thoughts/additions or revisions would be great so we could start to really flesh this out. If any health/social care professionals could chip with their experiences, thoughts and observations, that would be fab.

There may be some fairly straightforward solutions here.

Week 4: Listening to parents #107days

It’s hard to believe that we’re on Week 4 of #107days already, but we are, and this week we’re hoping to explore an issue that comes up time and again, listening to parents and families. We are hoping to reach new understanding through #107days so if you read this post and it relates to your experience, or perhaps you work in a service and recognise the situation but feel like your hands are tied/ears are blocked, or you completely disagree we would like to hear from you. Please do leave a comment and please also share the post far and wide.

To kick off Week 4 we have a blog post from Katherine Runswick-Cole: The #Motherblame Game

A gut wrenching post from Sara prompted me to tweet last week:

For mothers like me, the Bettleheim reference is familiar. In 1960s, Bettleheim, a psychiatrist, explained the causes of childhood autism as the result of a mother’s cold and maladaptive behaviour; he coined the term refrigerator mothers. Today Bettleheim’s explanation of the causes of autism has been rejected by mainstream psychology and psychiatry, but it seems that mother blaming is alive and well, living in Oxfordshire, as well as many other places across the United Kingdom. Indeed, the Tweets that fill my timeline suggest that mother blame is rife.

In a time of economic austerity and welfare cuts, you only have to open a newspaper to discover that mothers bear a heavy load. Mothers have been blamed for everything from naughty children, the rise in teenage pregnancies to summer riots. They are credited with the ability (or lack of it) to wire their children’s brains correctly, prevent childhood obesity and to create economically productive citizens. It’s tough being a mother in 2015!

But if you have a child with a learning disability things are tougher still. From the moment that your child strays ‘too far’ from the ‘normal’ developmental path, you are under additional surveillance, as the blame game begins – there will be no escape.

You are simultaneously the problem and the solution. You have caused your child’s delayed development (through your inept parenting or your dodgy genetic inheritance, it’s your fault either way) but, at the same time, it is you who must lead the charge to move your disordered child as close as possible towards some sort of mythical norm. Therapies and interventions replace the simple pleasures of playing with your child “you must make him look at you!”

When your child starts school, you find yourself characterised as simultaneously grief stricken and in denial. Your grief makes you unreasonable, tetchy, difficult, while being in denial leads you to make unreasonable demands on the system and on limited resources . You continue to expect that your child should have the same life chances as other children, how could you, s/he is learning disabled!

When your child becomes an adult, you’ve guessed it, you are still the problem. Your low/high (delete as appropriate) unreasonable (no option to delete the ‘un’) expectations will not be met. Your demands for your adult child to have a life like any other: a home, friends, a job, or, even, whisper it now, a relationship, are more evidence of your failure to accept your child’s learning disability. Surely you should be over it by now? Oh, and by the way, as your child is an adult, don’t forget, they must make their own choices, as long as these are compatible with the narrow, zero-aspirational, budget-centred (not person centred) options on offer.

And then a child dies, in the most horrific circumstances, a preventable death, surely then the mother blame game ends there? No. In the aftermath of LB’s death even Mother Nature got the blame in the over hasty claim for death by natural causes. Since LB died Sara has been surveilled, smeared and blamed for the crime of loving her son and seeking justice for him and other people with learning disabilities.

This week The Independent Panel for Special Education Advice stated on its Facebook page that 90% of its followers are women. At the #JusticeforLB event at Manchester Metropolitan University on 26 January 2015, I introduced Steve Broach, the disability activist and barrister, as having 3,000 Twitter followers – all mothers of disabled children (I was only partly joking!). I have been lucky enough to meet many amazing mothers of disabled children. Like Sara, they fight for their children to have ordinary lives and to be seen as fully human. It is a fight they bear with grace and tenacity while living with under the shadow of mother blame.

But this is a fight no mother should have to take up, and certainly not alone. The mothers of the disabled children I have met are all fighting for the same thing, recognition that their child is fully human too with hopes, aspirations, dreams, strengths, challenges like any other human being. As George Julian said at the Manchester event: [the campaign] is not a disability issue. This is a human rights issue. She’s right and through the #JusticeforLB campaign girls, boys, men, women, mothers, fathers, disabled people and non-disabled people, activists and academics, practitioners and family members have come together. Here there is a disability collective, a commons, claiming the human rights of people with learning disabilities.

While the neo-Bettleheimers still seek to blame mothers, in coming together as #JusticeforLB, we must work to build systems, structures, laws or better still, a society, in which people with learning disabilities are truly seen as being fully human too.

Day 46: The violence of disablism #107days

Today was adopted by Katherine Runswick-Cole; when I asked her why she’d got involved with supporting #JusticeforLB and #107days, this is what she had to say:

I first met Sara at a Disability Studies conference, we were both studying for our PhDs. Meeting Sara was exciting because we shared the same research interests but also because we were both mothers to young dudes. Sara and I stayed in touch, wrote a couple of academic papers together and every so often we would find ourselves at the same conference and have a bit of a gossip about life, the universe and everything! In fact it was Sara who introduced me to the joys of Twitter and, of course, I followed her blog.

Like many other people who have been touched by #JusticeforLB, I never met Connor, but through knowing Sara and reading her blog, I felt as if I had. The stories Sara told with such love and humour remind me of my own dude, and her family stories so often overlapped with ours.

Katherine, has written today’s post with Dan Goodley (who you’ll also meet again on Day 100). This is what she is up to:

I’m now Senior Research Fellow in Disability Studies & Psychology at Manchester Metropolitan University and I’ve been invited to give a paper on the theme of disability and violence on 6th May, 2014 at the Norwegian Network of Disability Research 6th Research Conference in Lillehammer, Norway. The blog posted today, co-written with my friend and colleague, Dan Goodley reflects on some of the things I’ll be talking about in Norway, including #JusticeforLB.

This is what they have to say:

The Violence of Disablism 

Like many people, we’ve been following the #JusticeforLB #107days closely. We’ve been inspired by the actions of others in support of the campaign and horrified by the revelations of the terrible treatment experienced by people with learning disabilities that continue to unfold as the #107days continue.

We’ve followed many of the blogs that have commented on the tragic death of LB including those of Chris Hatton, Rich Watts, George Julian, Jenny Morris and of course Sara Ryan‘s own powerful and deeply moving blog, and we’ve wondered what we have to add to what has already been said so clearly and carefully by many others.

However, it was Jenny Morris’ claim that Connor was a victim of ‘institutionalised disablism’ that prompted us to write this post. We agree with Jenny and her comments made us reflect on what we had previously written about disability and violence.

In 2011, we published an academic paper called “The Violence of Disablism” in the Journal of Sociology of Health and Illness. The paper was written as part of a wider research project focused on the lives disabled children (“Does Every Child Matter, post-Blair?: the interconnections of disabled childhoods”). Violence was not initially a focus for the study, but, sadly, in our work with children and families violence emerged as a distressing and disturbing theme.

We heard about disabled children being bullied on the bus, in toilets and on the street. We heard about families being marginalized and excluded because their children were “different”. We heard about schools where children were man handled and emotionally bullied by staff. We described this as the “violence of disablism”.

The violence that Connor experienced tragically ended in his death: the report of inquiry into his death documented that he was subjected to numerous incidents of ‘face down restraint’ in his 107 days in the unit. In the end his life was rendered so value-less that no one thought it worthwhile to check on a young man with epilepsy while he was alone in the bath.

The report of inquiry made it clear that individuals played their part in Connor’s death.  It is right that the staff members who left Connor alone to drown should be held to account, but there is a danger that if we focus our anger at individuals alone, then we will be failing Connor and all the dudes who continue to be subjected to the violence of disablism. Focusing on individuals allows wider communities to distance themselves from the bad acts of few bad individuals. Much of the response of the service provider has been to suggest that focusing on individuals means that we don’t have to pay attention to the multi-faceted, mundane and engrained ways in which the violence of disablism operates in peoples’ lives. We desperately need to address the systems and cultures that contributed to Connor’s death.

Winterbourne View and Slade House were located on industrial estates, how many other Assessment and Treatment Units are located on the margins of their communities? What other group of people, apart from people with learning disabilities, would ever experience a ‘stay’ or, indeed, live on the edge of an industrial estate? Currently, despite Winterbourne JIP, 1,500 people still live in ATUs, 14 of them are children.

As we saw in our research project, the processes that de-value the lives of people with learning disabilities are everywhere and they start when disabled children are young. To recognise that we live in a world that is inherently disablist permits us to start addressing a number of urgent questions:

• Why are adults with learning disabilities endlessly placed in the periphery of our communities?
• What kinds of things do we value about human beings and how might we broaden our values to include those human beings who might not fit with the ‘normal’ category?
• How helpful is it to talk about normal? Might it be more helpful to think of all of us as abnormal, anomalous, different and divergent?
• What needs to be done NOW to honour #JusticeforLB?

Katherine will be sharing this paper in Norway in a few days time; as the ripples of what happened to Connor, and the JusticeforLB campaign, spread ever further, it really is time for change. The final word goes to Katherine (and Sara):

In the midst of the tragedy and devastation that follows Connor’s death, I do believe that change is possible and that through the #107days tweets, blogs, papers, presentations and marathons, we can begin to build that change. So our post is written as we hold on to Sara’s words that “if anyone can effect change in the way in which learning disabled children/adults are treated, I’d lay my money on a bunch of (raging) mothers of disabled children”.

#RagingMother