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

Day 5: 107 stories from an assessment and treatment unit #107days

Yesterday we featured WiseGrannie who is a relatively new online voice to the discussions around care and support for people with learning disabilities. Today, we feature Mark Neary and his son Steven, both experts by (bitter/shameful/appalling) experience who have been at the front of the queue when it comes to generously sharing their knowledge and wisdom with others.

Steven + Mark Neary

Mark has a very personal reason for getting involved with #107days and #JusticeforLB:

Steven went away for 3 days respite on 30th December 2009. The following day I stupidly agreed to him being moved to an assessment and treatment unit. 3 days turned into 2 weeks and it finally took 358 days for him to be returned home. In his time in the hellhole, he was unlawfully deprived his Article 5 & Article 8 human rights. The scars are still there for him and me.

I’d like to keep assessment and treatment units in the news until they’re gone for good.

Mark has shared their experience in book form, if you’d like to read more then Get Steven Home and There’s Always Something or Other with Mr Neary provides the background. The titles alone speak volumes. For #107days Mark is sharing 107 stories from Steven’s time in an assessment and treatment unit. He started slightly ahead of us and so far has shared ten stories including Shoes and Beards and Bryan Ferry and Challenging Behaviour. I promise you will laugh and cry and shake your head in disbelief, it’s powerful stuff.

Just last week Mark has also shared two post on his personal blog that bear striking resemblance to LB’s family’s experience to date: A Smile, A Shrug, A Sob and A Stab and the follow up A Smile, A Shrug, A Sob and A Security Alert. It seems there is a pattern to what can be expected, suffice to say that sense prevailed in the end for Mark and Steven, and we take strength from them, and won’t be going anywhere until things change, permanently, for young dudes and dudettes, and until we have some Justice for LB.

We’re very grateful to Mark for sharing his and Steven’s experience with us through #107days. You can follow him on twitter here @MarkNeary1 and you can wish him a Happy Birthday for today too!!