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Who’s Listening?

October 21, 2017

I spoke at the National Advocacy Conference on Thursday. The organiser, Kate Mercer, delivered a great rousing opening address. She called on the advocates present to have a more collective voice. Whilst acknowledging the fine work they do on a 1:1 basis, she called for people to come together and speak out about systemic issues they encounter.

It made me think of the people in Cygnet’s Cedar House that we featured in the last 7 Days of Action campaign. To different degrees they all have some form of advocacy but nobody is speaking to each other and joining up the dots and making a bigger noise. Why is nobody shouting about the inordinate length of time people stay detained in Cedar House? (We came across four people with stays between five and fourteen years).

Inspired by Kate’s presentation, I decided to change my talk at the last minute. I thought I’d change the narrative of the Get Steven Home story and frame it as “Who listened to the advocates?” I bunked off the afternoon workshop and made some new bullet points.

Steven had quite a lot of advocates during 2010. Professional and non professional. But the impact they had on getting Hillingdon to listen was negligible. Their biggest problem is they were representing Steven’s view and wishes which were completely at odds with the Hillingdon position.

What advocacy did we have:

1. Late in the day, we finally got an IMCA. Even though Justice Jackson described her report as the “first best interests decision that deserves the name”, she was ignored by Hillingdon.

2. Four Best Interests Assessors. Unfortunately they allowed themselves to be so compromised they ended up acting against Steven.

3. The independent psychologist. His report was sat on for two and a half months because he presented a different view to Hillingdon’s.

4. The learning disability nurse and the manager of the support agency. From the minutes of various meetings, both challenged the party line. And for their efforts, both were never invited to future meetings.

5. The support workers. Both Francis and Chris gave evidence in court that they were never involved in discussions and planning about Steven’s care. In fact, when Francis challenged the managers he was subjected to the most awful violence that nearly led to him losing his job and home.

6. The press and media. They were met with the usual “we cannot comment on individual cases”. Until the court case, when Hillingdon decided to use the press by issuing their press release that presented Steven appallingly.

7. 5000 Facebook supporters. They were seen as people manipulated by me to back a one sided story.

8. Me. All my advocacy was turned against me and framed as “uncooperative, passive aggressive, unable to support Steven” with questions raised about my mental stability and integrity.

The point I wanted to make in the talk was that Steven’s biggest and best advocate was/is himself. If only he’d been respected enough to be listened to then the cast of characters above wouldn’t have been needed. Let’s look at how he self advocated:

1. In polite words. Several times a day for 358 days he would say to whoever he felt might listen, “want to live in the Uxbridge house with Dad”.

2. In making plans. He would seek the help of others to get him away. The unit had a rodent problem and one day Steven asked the Rentokil man, “Take Steven Neary in your van to the Uxbridge house”.

3. In song. Where verbal requests failed, Steven drew on his vast repertoire of songs to express his wishes. He would greet the manager daily with I Want To Break Free or Sloop John B (“I feel so broke up. I want to go home”). Nobody had the imagination or honesty to hear this.

4. In behaviour. As was glibly repeated by the unit, “all behaviour is communication”, they completely ignored the obvious message Steven was communicating.

5. By escaping. When all else fails, make a break for it. As the year wore on, Steven’s escapes became more intricately planned by him.

Where Steven shot himself in the foot was with his direct honesty and inability to play the game. All the people I mentioned above, having tried the direct approach, then moved to more tactical manoeuvres. Steven can’t do tactics. So what you get is, BOOM, in your face, truth. He paid a terrible price for that. State bodies cannot handle that level of truth and their only response is shocking violence against the truthsayer. Whether it was covering up Steven throwing his broccoli in the bin or matters more serious, his truthful actions were seen as a great threat. After Steven’s nighttime, barefoot escape, the social worker dismissed it as Steven being “terribly confused”. Yet to everyone not trying to hide the truth, they saw it as Steven having the capacity to plan and execute his dream.

Steven is perfectly capable of advocating for himself on most matters.

He only needs advocates because he’s seen by the State as not quite human and is subsequently not listened to.

But when Steven and a whole army of advocates aren’t listened to, what can the collective response be?

Kate? Any of the delegates? We need you but what can you do?



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  1. johnpopham permalink

    Hi Mark – I am particularly interested in what you say about the attitude to the 5000 Facebook supporters. Where I live, in Huddersfield, there a proposal to effectively close the local hospital and move most of the service to Halifax. There has been a Facebook Group in opposition to the proposals with nearly 50,000 members, as well as marches of 10,000 people and lots of other parts of the campaign. When the Facebook Group was mentioned to the Chair of the CCG which is leading the proposals, he dismissed it as “Facebook people, not real people”.

    As social media becomes an increasing factor in allowing people to express their views we must resist officialdom’s attempts to characterised it as not genuine feeling.

  2. Marie Strawberry permalink

    Reminds me of Simon Duffy talking at Tomorrow’s Leaders 2013 and telling a group of advocates/activists that it was their own fault that people with learning disabilities were treated so badly because they allow it… in the context of cuts but the logic is the same.

    The wishful thinking of the chronically well intentioned simply ends up as victim blaming when they’re up against a rigged system where they (and none of us) can actually win.

    Or at best, victories or tiny and limited, take years of work, and do not change the system in itself that is the problem.

  3. Another fantastic blog Mark. Thank you

    I guess there are always two options: do nothing or do something. And the best advocates are the ones who continue to push, despite hitting walls. They do something. Over and over and over again.

    I wish we didn’t need advocates. I wish that people were listened and taken seriously. I mean, Steven is literally singing ‘I want to break free’. There is no imagination or communication aids required to understand what he feels and wants.

    In my view, the greatest power will come from the self advocacy movement, so the Independent Advocacy sector needs to think carefully about how we support this. But seperate from this, I also think advocates need to start shouting more – with a collective voice – to influence the people running the systems. There is a lot more we could be doing.

  4. judyb permalink

    Never understand why advocates should be needed – if family or friends are happy to advocate why will someone who has never met the person be any better????

    • Marie Strawberry permalink

      I suppose it give control and leverage to the advocacy by the system, at least if the person wants to go on being paid as an advocate.

    • Hi Judy. You’re right. The person, their family and their friends make the best advocates (as can professionals who know the person well). But there are two main reasons why someone might want/need an Independent Advocate.

      Firstly, there are some people who simply don’t have family or friends who can advocate for them. They may have lived alone for their life or become estranged….. And then there are sadly, some family members who abuse people. So advocates are needed to make sure the person has someone to stick up for them.

      Secondly, if the person has wishes or choices that the family disagrees with, it can be really hard for them to speak out. An older person doesn’t want some chemo treatment but can’t tell their son and daughter because they want their mum to try everything to get well…. or a young lady wants to move out into their own house, but dad is super worried she can’t cope so wants her to stay at home. There are lots of times when people don’t express their choices because they are worried about what their loved ones will say – so advocates can come and help the person make their own choices and have their voice.

      Advocates don’t make decisions about what should happen – we are just there to promote what the person wants because this often gets lost.

      • judyb permalink

        Good points. But in my experience in mental health seems to be we don’t agree with what family are saying , so will ignore it. Person with mental illness may say all sorts of things, often desire to be discharged, live alone etc may be driven by the illness, and would be very different if they weren’t psychotic, depressed etc.

      • Kate, I agree with what you say.
        Except, advocates are not all independent, and mostly don’t know/don’t have time to get to know the person.
        I’ve worked as an official advocate, and now I’m an advocate for my own child. Professionals treat me as the best advocate for my child – they aren’t against us – although some definitely were.

        It’s a grey area.
        If the person has a capable and supportive family, they’ve got real advocates, no question. If they don’t have, advocates may be better than no advocates. Some professionals advocate, although others may have a conflict of interest.

      • weary mother permalink

        The elephant in the room here is that caring Services and support have been cut to well below danger levels and are dropping..

        There is no choice just more new words to describe it. And no one is listening.

        Paid for advocacy comes out of scraped budgets; is currently wallpaper to cover sink holes where care once was. A pretend.

        Advocacy can only work where there is a sliver of humanity and choice left, and where some one is listening.

        In this context a chorus on the power of advocacy, in a costly conference room, is just expensive noise.

        Experienced and caring families advocate; and they bang on the closed doors and ears for free; only to be seen as the enemy.

        Our vulnerable sons and daughters who can.. do. and they speak up bravely into a resentful vacuum.

        Those who have no family, suffer on silently.

        For no one is listening.

  5. simone aspis permalink

    well said Kate – the biggest power coming from the self-advocacy movement – what I have been saying al the long!

  6. Pauline Thomas permalink

    Not listening means not having to do anything about the situation.. Not listening means that people who appear frustrated and angry can be given the chemical cosh. Not listening means there is no need for dialogue with people who are seen as not quite human. Not listening means building more and more ATU’s even though institutions like these were supposed to be abolished years ago.

    • Yes, Pauline, so true.

    • weary mother permalink

      So true Pauline.

      And to the paid people who say that they listen and they hear us, (while taking their paid for by us shilling,) while wringing their hands, and saying ‘we would… we would…but…..but…..but’, etc.,

      as the wise man said…….’ ‘everything before the ‘but’ is bullshit”.

      Don’t just say it….

      We mums and dads,. the awkward squad.. …..listen and do ‘it, ‘ all the time and we do it with a lot less power..

      We do your job as well as our own..

      Listen and do.

      Only then, will your paid for advocacy be useful..for our sons and daughters….and us.

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