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Odd Species

August 22, 2017

Imagine a diagram in the shape of a column. The column has about 20 sections, rated from “least important” at the bottom of the column, going upwards in ranks of importance to the top of the column. The title of this diagram is “People who know best in the lives of learning disabled people”. There is little doubt, that at the bottom of the column, representing the least important would be the learning disabled person themselves. In 19th place, and only narrowly above the learning disabled person is their family. In the 18 rising positions above would be a whole range of “stakeholders”: social workers, psychiatrists, advocates, providers, commissioners, therapists, on and on.

Other people likely to appear above the person and their family are some unlikely stakeholders. In fact, they’re not stakeholders at all but their perspective is considered more valuable than the people whose lives are being examined. When Steven was detained, the positive behaviour manager (position 5) carried out risk assessments of all the places Steven went to. No problem with the manager of Virgin Active. No problem with Steven’s personal trainer at Flex gym. Big problem with the person who runs the Mencap Pool. I saw the report. The pool supervisor’s input was “unreliable” because the pool was “organised and run by fellow families”. Same thing last year when Steven was investigated for an ASBO a month after moving into his new flat. The neighbour’s evidence was more valuable than mine.

All day today I’ve been thinking about the ending of the 7 Days of Action campaign. One constant criticism of the campaign from day one was that it was family led. I lost count of the number of times I found myself defending the fact it was family led. And then started to feel resentful that I was being apologetic. Often the criticism came from other disability campaigners which inevitably leads us into tense territory. “Why aren’t the people that the campaign is about leading the campaign?” was a question frequently posed. The responsible clinician in Eden Norris’s unit has refused Eden permission to attend his grandmother’s funeral; you try asking him to allow Eden some leave to record a BBC interview. Steven couldn’t have run an online campaign when he was in the ATU – residents weren’t allowed access to a computer. But this shows the shifting sands a learning disabled person and their family have to deal with daily – most of the time their experience/opinion is irrelevant. But on other occasions they become objects of suspicion.

The findings at Dr Murphy’s GMC hearing show how fatally dangerous the tendency to keep families at the least important end of the column is. The Panel’s decision shows how ludicrously all bases are covered. Sara Ryan’s daily blog was seen as unreliable. It was described as “a perspective”. A perspective, in itself isn’t too bad until you compare the weight given to the evidence Dr Murphy relied upon that she kept “in my head”. Years of experience dismissed as “a perspective” and yet we can rely on the judgment of a clinician who prescribed a major anti psychotic before even meeting her patient.

One afternoon in 2010, Steven’s social worker asked me to meet her in Costas. It started awkwardly but then I found myself relaxing. She started asking me about my work, admitting that she would love to do some counselling training and she seemed genuinely interested. To paraphrase Shirley Valentine: “I used to just be the father. I used to just be the overly involved advocate. Now I’m Mark Valentine again”. As I arrived back at the table with a second round of cappachinos the mood changed. She wanted to talk about my complaint about the shift leader who had kicked Steven and thrown a cup of coffee over him. The chasm reappeared. Steven’s story of the assault was “difficult to make sense of”. I wasn’t there when it happened so my complaint was based solely on Steven’s “unreliable story”. The shift leader denied everything. Bearing in mind, the shift leader was about number 11 on the column, guess what the outcome of the complaint was?

This won’t change. The sheer force of the 18 stakeholders above the learning disabled person and their family means the status quo is maintained. Even if a couple of them stand aside in a person centred sideways move, the person and family remain heavily outnumbered.

We’re a different species.

There must be a positive behaviour manager with a learning disabled son somewhere. How do they cope with being number three on the importance scale when they’re assessing my son, before plunging to number nineteen when their own son is being assessed by another positive behaviour manager?

If you doubt my assertion that it’ll be hard to change this mindset, here’s a little story to end on. I’ve been invited to take part in a research project in January as an “expert by experience”. The project is being led by a pretty progressive organisation. I did a little bit of checking and it looks like I’ll be the only person sitting round the table providing my expertise for free.

The title of the project: “The Importance of Including Families”.


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  1. Jill Honeybun permalink

    My son is 38, brain damaged at birth, can’t read, write or do any maths. I appealed all the way to the Secretary of State for Education to get funding for a really good special school. This was granted, the letter states “X has severe learning difficulties”. A new “care” manager wrote on his new Needs Assessment that he had “Moderate Learning Difficulties” based on a short interview at his flat. Education shredded all his files when he was aged 25. SSD must have duplicates on paper, but all their old paper records are stored remotely. What do I, his mum know? I’ve been caring for him from the moment he was born!!

  2. In a circle of support the person and family are at the centre.
    Everyone knows this should be the case in all circumstances and situations – whether others do the right thing or not.
    Your expert by experience role should be paid as you’re not free – it’s not such a progressive organisation. Please ask if others are volunteering their time.

    • Anna Wright permalink

      I was also surprised that you’re not being paid. I work in a university school of social work and our experts by experience are all paid per hr for any meetings; prep time if there is a significant amount of reading; travel costs (and time if we are asking them to travel further than home to uni). Same in other unis and depts as far as i can tell.

      • In fairness, they were willing to meet my travel costs.

      • Yes, Anna, they pay me hourly too, on top of travel, as I sometimes do this.
        Academic departments are very upfront in that sense. It’s very personal work, and very costly in that sense to the speaker.
        Some Health and Social Care Trusts don’t pay, though all attending are paid to sit and listen and I did speak twice or so, but not again.

  3. shirley buckley permalink

    When we first went to CoP in 2006 I stated categorically that I held all Martin’s medical records. Sir Mark Potter then requested that I passed all the records on to the solicitor working for the OS. These then disappeared. After a chase I got them back but the documents the solicitor had used for the bundle were irrelevant. And so the battle commenced. I have only appeared in CoP as the person holding all Martins medical records with his permission. Sir Mark Potter was very clear that the LA should co operate with me. The result is that I dont even appear on your diagram. And as far as the LA is concerned the medical records do not exist either.

  4. weary mother permalink

    Many years ago, I was employed to speak at a conference. The speaker before me used a sociogram to describe the influences impacting on her learning disability community team,

    She completely omitted learning disabled people and families from the slide.

    I borrowed her slide and used it; asked the hall full of professionals where they saw people with LD and families on this slide. I drew us (our sons and daughters – and families) on the sociogram slide – as outside it..dangling from it on the end of a string, hanging low – valueless and powerless.


    We families do not calculate our sons and daughters worth every year and adjust it accordingly –
    against this years budget deficit.

    We share a language – and a life of knowledge of each other .

    In reviews a care manager with limited knowledge of same..and a time and a cost remit, can completely bamboozle my son by asking him questions in a peculiar language.

    Some years my son utters not one word in the review, and the worker does not notice. Yet the form is completed. Essential needs are cost adjusted – removed… renamed wants.

    After reviews my son’s (family less) flat mate always says..’they don’t listen..they don’t never ever listen’, quite heart breaking. He/she knows -she/he is just the bottom of the heap.

    And the excellent support worker – who has developed a knowledge of and relationship with, my son and flatmate ….is not permitted to attend reviews – for she is like us…value invisible…and outside.

    And her chaotic and disruptive agency manager who knows son or flatmate not at all.. …attends reviews – for is ….inside the status circle.



  5. I think the people complaining that 7DOA was a “family-led” campaign were chiefly the pan-disability activists with too much time on their hands who think they should be the ones to articulate the interests of more severely disabled people than themselves, regardless of whether they know what is in those people’s best interests or not. Usually they are physically impaired or have mild (Asperger’s type) autism — they are particularly known for blurring the distinction between that and what used to be just called autism. Their attitude is that things that work for them will work for all disabled people, and the things that didn’t, or which they didn’t like, won’t.

    I wrote a piece a couple of years ago about these sorts of people; sadly most of the links in it are now dead as the blogs have been removed, but there’s some relevance still: Can anyone speak for all disabled people?”

    Of course, parents aren’t entitled to speak for and dictate the lives of people with purely physical impairments. That’s not the case for people with learning disabilities and who do sometimes need their families to fight for them.

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