Week 4: Deaf Ears and Force Majeure #107days

Week 4 has received a huge reaction so far on social media, it seems the issue of listening or non-listening (to families, parents, disabled people) touches a nerve for many of us. This week started with Katherine’s thoughts on Motherblame, followed by Sara’s on why it happens The moon on a stick? Today Mark Neary has kindly offered his perspective:

Deaf Ears & Force Majeure

Since being asked to write this post for the Listening to Families week of #107days Take two, I’ve been thinking back over the seven years since Steven was transitioned into adult services. It makes my heart sink to think that in that time, Steven has been barely listened to by the care professionals. If I think if I have been listened to, it registers on the scale slightly lower than barely.

In 2010, Steven spent the whole year in an ATU. Speaking his wishes never got him anywhere, so he took to singing his desire to come back home and greeted the ATU manager every morning with ‘I Want To Break Free’. At the time, I felt I was being humoured. But when we got hold of the social care records, I found it was much worse, the professionals were openly hostile to my input into Steven’s care. Don’t take my word for it. In 2011, Justice Peter Jackson ruled that Steven’s Article 5 & 8 ECHR Human Rights had been breached and this is what he had to say on the subject of listening to the family:

It (Hillingdon) acted as if it had the right to make decisions about Steven, and by a combination of turning a deaf ear and force majeure, it tried to wear down Mr Neary’s resistance, stretching its relationship with him almost to breaking point. It relied upon him coming to see things its way, even though, as events have proved, he was right and it was wrong.

And later in the judgement:

Regrettably, once Mr Neary’s initial resistance to its plans weakened and fell away, Hillingdon appears to have taken a dim view of his concerns. In an e-mail dated 22 February from the social worker to the support unit, the following appears: “There is always going to be something or other that Mr Neary will bring up and more often than not we are having to appease his needs rather than Steven’s. I know that it seems that you as a team are constantly being questioned but this will be the case because Mr Neary wants to find issues with the care that other people give Steven. We just need to ensure like we have that we are working together for the best outcome for Steven.” It is now accepted by Hillingdon that Mr Neary had done nothing to deserve this disrespect. The unfortunate tone of the message demonstrates that even at this stage the expression “working together” did not include working together with Steven’s father in the true sense and that Hillingdon’s thinking had by this stage become adversarial. Worse, the professional view was withheld from Mr Neary, perhaps because revealing it would have provoked a renewed challenge.

And in his final summing up:

Hillingdon’s approach was calculated to prevent proper scrutiny of the situation it had created. In the weeks after Steven’s admission, it successfully overbore Mr Neary’s opposition. It did not seriously listen to his objections and the suggestion that it might withdraw its support for Steven at home was always likely to have a chilling effect. Once Mr Neary’s resistance was tamed, the question of whether Steven was in the right place did not come under any balanced assessment.

The big question is why? Our story is not unique. Why do professionals take such a combative stance when straight forward dialogue and listening to the family experience ought to be so valuable?

I think Sara hit the nail on the head yesterday and it comes back to the person being seen as not really human. So, by default, the person’s family occupies a strange space in the official framing, whereby they are not seen as like other families. It doesn’t matter how you present, what your life experience is, you are forced into a lesser than box.

I’ve obviously thought about this many times since the court case and I believe that the main reason why families are side-lined are because they have to be.

Social care is built on several building blocks of illusions. The illusion of the social care world couldn’t sustain itself if the family’s reality was heard and attended to. To maintain the illusion the family has to be ignored or attacked. At home, we get very few incidents of challenging behaviour with Steven; at the ATU, they were recording up to 30 per week. So, to protect the illusion that the professionals knew best and that the Unit was the best place for him, the attacks on me started; they believed I didn’t report honestly. They believed that I wouldn’t continue with behaviour management programmes. And we move into very dangerous territory if I dared to suggest that, actually, I didn’t need a behaviour management programme.

It must be awful, going into work each day, terrified that at any moment, you might fall into the king’s new clothes abyss. Once at a meeting, I laughed. It was spontaneous. I certainly didn’t mean to do it. The terror in the room was palpable. The abyss opened. I think Steven and I paid quite a high price for nearly exposing the void.

As part of the group trying to make #LBBill become a reality, I get scared. Empowering legislation like the Human Rights Act, The Mental Capacity Act often seems to have the adverse effect. Having rights involves listening to families. It also involves giving some power away. That’s an almighty shift and one that seems a very long way away.

StevenN

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:

Screenshot 2015-04-14 07.18.15

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.

Moon on a stick

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:

Screenshot 2015-04-13 00.25.47

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.

KRCpic