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Whose Story?

June 20, 2015

On Thursday I spoke at the Dignity in Care conference in Birmingham. I was booked to tell the get Steven home story and then later be part of a panel of 4 chaired by the former Labour home secretary, Jacqui Smith, taking questions from the floor.

I’ve done several of these events now but two things happened that floored me. Firstly, in the nicest but most emotional way, Ms Smith gave me some feedback that was so moving it left me choking back the tears. Then during the lunch break I was challenged by one of the delegates and I’ve been pondering his challenge since. His first questions were focused on how Steven has been since 2010 and whether he has any ongoing trauma. We chatted for a bit and he asked me why Steven wasn’t here today, telling his own story. I explained why and as he got up to leave, he said “We can speak for ourselves. (He has aspergers) Just remember, you’re not telling Steven’s story. You’re telling a fiction”.

It completely threw me and I’m still pondering it 48 hours later. I know that if it were possible for Steven to be at the lectern, he would tell quite a different story. Steven has a catalogue of stories of things that happened to him whilst he was at the Unit but they don’t include all the meetings, the DoLs, the council’s plan or the court appearances. I use Steven’s words in the presentation. For example, when I talk about his barefoot escape on the night of the Take That reunion, I use the exact words he used to me the following day when he was describing his escape plan. But all in all, am I telling Steven’s story?

I don’t think I’m telling my story. I’m not being booked to tell my story. I’m in the story but its not mine.

Am I telling ” our story”? Steven and I aren’t on the platform together, so probably not. But at the same time, I am telling a story that involves the pair of us.

So perhaps I’m just telling “a” story.

Does that matter? I think it did to the guy who challenged me. Later that day, I followed a discussion about LBBill, where the focus was that it was a “parent led” project. In the same way that I had been telling a parent led story. Steven led the events of 2010, I lead the telling of the story. Is the LBBill parent led? There are a lot of parent voices involved, for sure. There are also lots of non parents involved. There are also, most importantly, lots of disabled voices in the Bill.

I get confused and embarrassed when I’m challenged by a disabled person over what they see as the shortage of disabled voice in the Bill. Instead of me trying to ensure Steven’s wishes and best interests are included in the Bill, should I step out and hand over to an advocate to speak on his behalf? Even the non verbal have a voice but seldom have a platform, so how will their voice be heard? Is it really so wrong for the parent or carer to try and provide that platform. Steven knows about the LBBill. If I’m totally honest, he hasn’t shown a blind bit of interest in it, no matter how much I’ve tried to involve him. But without me, LBBill wouldn’t get within 100 miles of Steven’s radar because his voice isn’t available unless he’s asked. And nobody, and I include all the disabled organisations in this would ask him. There is no point in waiting for, for example, Mencap to find him. Steven, and his voice, is inaccessible unless it is sought and nobody but his friends and family are going to do that.

My apologies for the confusion of this post. I certainly have more questions than answers. And it’s probably going to take ages, if ever, for me to get my head around these issues.

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From → Social Care

14 Comments
  1. As a Parent Advocate myself, (I run the Special Needs Jungle blog) I applaud you for everything you do on Steven’s behalf. You are not just having an impact for Steven but for so many young people like him who are themselves, or whose parents/carers are, unable or confident enough to voice their own concerns.
    The important thing is that a voice IS heard. Our young people in this position usually just accept their lot whether good or bad, not because they don’t have a voice, it’s just the no one who can help is willing to take the time to listen to what they have to say.
    Even those people with LD who are able speak out need to be supported to do so by parents or carers, so without you and other advocates their voices still would not be heard.
    It is the duty, I believe, for the strong to support the more vulnerable and that means you have to tell Steven’s story on his behalf. If he were able to understand and analyse the injustices that had been heaped upon him by people whose JOB it is to do the best for him, you would no doubt support him to do that too.
    My teenage sons have Asperger’s like the young man who spoke to you. They are both very intelligent but often have unusual ways of describing things and narrow ways of seeing things. I’m often left with hurt feelings when they voice pithy opinions that are black and white, rather than the greys that, in reality, obscure what would be ideal.
    That doesn’t mean their opinions aren’t worth considering because they often remind us of why it’s important to support them when needed, so their voices are not only heard, but understood and acted upon by those in authority who might otherwise dismiss them as unimportant.
    You are integral to Steven’s story – without you, your energy and determination, his story would have no narrator. That’s what an advocate does, speaks up when those who can’t would otherwise go unheard.

  2. weary mother permalink

    A very thought provoking piece indeed.

    Where you speak eloquently in public people listen. The dialogue/exchange with people who have power over you through your son is on that day, in that venue, at a level, is mutual. You speak and they listen. But come on?…is it brand new news to them, this dreadful personal history of abuse and misery imposed on you and your son, by people like themselves?

    So would it be more true if Steven was stuck up on the stage, only you know the answer?

    Increasingly from the late sixties people with LD have been asked what they would like by paid people.

    Thirty and more years down the line ,vulnerable people who repeated, with resilient trust and huge patience, that they just wanted the same as everyone else, are where?
    .
    Our sons and daughters have been sharing their stories and behaving their lives very loudly..unheard and unseen in front of the very people who complain that the shameful stories we tell on behalf of our sons and daughters, so very painfully and wearily, are just ‘parent’s stories..

    These people can see and hear our sons and daughters, if they look and listen … without a day off to go to a conference,, for they are speaking out very loudly all round them, ..

    Why would sticking them up exposed and powerless, in front of (apparently in every other context)…blind and deaf people, who see nothing and hear nothing at any other time, make a whisker of difference.

    But of course this is my view, and I am a parent?

    • Deb permalink

      Weary mother you have a good point, and I could not have put it better myself – Speaking as a parent of a man who genuinely cannot speak or sign or point to pictures, so I have to tell his story but not everyone listens. Personally I feel that more trauma could arise from expecting Steven to have to retell and relive his horrific story to a room full of strangers. If anything Mark you are doing what any parent does naturally, you are protecting Steven – maybe your challenger wasn’t a parent.???

  3. Julie N permalink

    Stories can be told in many ways…in the first person or the third person. It doesn’t make them less of a story and it doesn’t have to mean that the point, moral or outcome of the story is necessarily any different. Steven still suffers with the constant retelling of the story in his own mind and you witness that daily. Surely he doesn’t need to tell it to others. Would any of us? You do your utmost to be a true advocate for Steven where others have failed horribly and I believe you tell the story well.

  4. Deb permalink

    Mark the difference is if Steven wanted to get up in front of a room full of strangers and tell his story and you were stopping him, clearly that would be wrong. But that’s not the case – as you have pointed out, Steven is aware of what you are doing, but he choses not to engage whatever his reason. Perhaps this is his way of dealing with the traumatic experience of his memories.?

  5. Helen permalink

    I am fed up. I am fed up because the self advocate who challenged you had no conception of the relationship, understanding and love you have, for and of your son. How can that person speak on your sons behalf? I am proud of my son, I love and cherish him.
    I am fed up because too many people have been programmed to repeat simplistic phrases that masquerade as radical, but do nothing more than throw a few crumbs to those at the top of the welfare pile. We are proud of our children. We love and cherish them.
    I am fed up with people who can speak for themselves, telling me and other parents that we cannot speak for our young people – who have no voice or whose voice is limited. People, our adult children who we are proud of. People we love and cherish.
    I am fed up because stories are multi layered and complex and don’t have simple solutions. It is misguided to think parents of people with learning disabilities are atypical. Like most Mums and Dads are proud of our children. We love and cherish them.
    I am fed up with the over simplified dichotomies and rhetoric very particular to England. Move on – look at what is happening in the Nordic Countries and North America. We want all our children included – not just those who can speak for themselves. We are proud of our children we love and cherish them.
    I am fed up. We want our children to grow and have opportunities. We are proud of our children we love and cherish them.
    I am fed up with my sons talents and gifts – forever unrecognised – because they don’t fit into anything defined as work – so getting a job isn’t his agenda. I am proud of his gifts and talents. I love and cherish him.
    I am fed up because his agenda also needs recognising in the brave new world. So he is inconvenient to some. His reasonable adjustments don’t look like others. I am proud of my son I love and cherish him.
    Mark I love your blog. There has been much good work from VPN. Things have got better. But time for mark Valuing People 3. Beyond normalcy. Helen

  6. I had never thought about this before because any story is from the perspective of the person who is telling it. I feel the question here is what is the objective truth of what happened and nobody can answer that. If you had asked my daughter in her situation she would have just agreed with all the social services decisions without understanding that they weren’t in her interests. I wanted to protect her as her mother. If you only heard Steven’s story it wouldn’t have conveyed the wrong decisions made by the authorities and so nothing would have been done. It has to be “our” story but with the understanding the parent/family/carer brings to it. The LD spectrum is so wide that those at the more severe end need their family to speak for them.

  7. I worked for years with children with a variety of difficulties. Later I was asked what made the difference between the ones who went onto to lead satifying, purposeful adult lives and those who didn’t. I had to think hard for the shared key factor.

    The single most important factor by a mile was that they had somebody (usually a parent, though occasionally a sibling or grandparent) who thought the sun shone out of them & would fight like a tiger for them.

    So don’t give another moment’s thought to that formulaic “right on” comment.
    You’re not a patronising outsider – you’re a key part of Steven’s story & you keep shouting it from the rooftops (or the conference platform) for as long as it helps to give others an increased insight or greater confidence to keep on fighting.

  8. Sally permalink

    As far as I can see, as a loving parent you talk for Steven because he is not able to describe the big picture of that was going on for him at the time. It would be impossible for him to begin to sum up the legal complexities, stages, conflicts, assessments, different bodies involved etc etc.(.I think you once said that a Judge described all the Hilingdon organisations and practises as impenetrable.) You speak for Steven because he cannot do it for himself. Also as others have said, it would subject him to enormous exhaustion and distress to be put on a stage and made to attempt it.
    I respect the young man at the meeting’s right to express his opinion, but it did get me thinking.
    I think there is is a bit of a problem in Autism land. The diagnosis of autism used to have the criteria of learning disability of various levels. 70% of people with autism had a significant learning disability. Asperger’s syndrome had the criteria, among other things of NOT having a learning disability. Now the two diagnoses are lumped together as ASD.
    OK there are probably many great things about this but my concern is that articulate people with Aspergers and their stories are getting a great deal of attention. They give interviews, they write books they give talks. The learning disabled and autistic are less and less in the picture and not claimed by the high functioning group.
    I was recently at a local meeting for young people with ASD, and the parents of very high functioning young people with Aspergers were well to the fore. Parents of children who were autistic and severely learning disabled (me included)were !eft isolated and certainly left feeling that their hooting, hitting, non verbal children were not really in the picture. It was all A levels., and how it’s difficult in the common room at Uni.
    I totally respect somebody with high functioning Aspergers needs help, but let’s try to keep the less well functioning in the picture and that includes the problem that learning disabled autistic people can’t speak for themselves, can’t argue for themselves, sometimes can’t speak at all. We do our utmost to speak for them as best we can

  9. MY daughter has Aspergers, she is intelligent and understands her disability (and indeed why it is a disability), but I will be filling out her PIP form when it arrives. Why … because she has Aspergers and is mindblind … not only of others, but also of herself. Her perspective is affected by the disability itself. So difficult.

    Keep telling the story any way you can. We need you to.

  10. Pauline Thomas permalink

    I agree LB. Keep telling the story Mark. We need to publicise these injustices which are heaped upon people who are disadvantaged because of their disability. We (carers and cared for) need voices like yours.

    My son used to acquiesce with anyone who had authority over him. Agreeing with everything they said. He was people pleasing, even though he knew what they were offering him was not what he really wanted. The things they offered were not his choices, but what was only on offer. Hobson;s Choice so to speak. When they were gone he would worry that he was going to be asked to do something he was not happy with. We, his parents, would get the flack after they left. We tried to explain to the powers that be, but they assumed we were ‘talking for our son’. We were trying to control him for our own ends. We were trying to change his mind. How utterly wrong they were.

    Most parents know their son/daughter better than anyone. They make perfect advocates. We only want what is in the best interests for our son. We want what he wants. It would be wonderful if he could be like his brother and sister and organise his own life. Make his own mistakes and not be a unwilling victim of somebody elses mistakes.

    • Sally permalink

      Pauline, I agree with you about the people pleasing.
      Of course parents want their disabled children’s voices heard. But we come up against capacity. I think the excellent cause of the disabled being heard is being used by unscrupulous services to justify shabby treatment. “Oh, he said he was fine” “Oh, he said there were no problem ” “Oh, I asked if he needed help and he said no, so I respected his voice and closed the case.”

      A lot of terrible treatment is based on the myth that learning disabled people have full capacity.
      My son would also agree with anything at all that was put to him. He wants people to be happy. His idea of what is needed or wanted stretches as far as the next five minutes. He can’t understand anything but the most simple instructions. He tries very hard to be good. When we are gone I know some conscience- dead employee will ask him if he agrees with something, and he will agree. Even if he then ends up alone or in the street! “Oh, he said he liked to do his own thing”

  11. Noone who hears you doubts your integrity in speaking out. It’s not instead of people’s own voices – it’s as well as. You’re not denying him a voice – in fact you seem to me to listen very well to him. People with disabilities need allies as we all do – so as long as we don’t stand in the way, we need others to speak out too. Not everyone can speal out and one disabled person’s truth and story isn’t others’. Where people can’t easily speak out for themselves they need people to witness and report… It really shouldn’t be either or… we need everyone to speak out and refuse to lie down and grow the noise and influence.

  12. Spoonydoc permalink

    “Nothing about us without us”. This is a good, or even crucial adage. Many disabled people feel extremely strongly about it, including myself, because there is such a long history of people and organisations acting and speaking for us “for our own good”. Even an articulate, highly educated disabled person such as myself has run up against it and had to fight it on occasion.

    Furthermore some disabled people have found their own parents to be overprotective when the time came for them to leave home and gain their independence like any other young person out there. Their abilities could be underestimated and they could be held back by those who ironically loved them most, again, for their own good.

    So unfortunately this has wrongly often led to a distrust of parents and carers in general. I think there is a lack of understanding/awareness among some disabled people, probably including myself, of the issues and difficulties faced by disabled people with the type of impairments we are talking about here. This leads to a poor understanding of the role the parent or carer plays and the relationship between parent and disabled person.
    Parents and carers like yourself then get judged based on different standards, those of a disabled person with very different needs and abilities.
    Perhaps more needs to be done within the disabled community both to include your son and understand the necessary role of carer/parent. This could help avoid unwarranted assumptions and judgments such as you have just been subjected to.

    That said, based on many disabled people’s experiences, I would still say that parents and carers need to be ever vigilant that they are not inadvertently holding their disabled family member back in any way, or speaking for them when in fact they could do so themselves. I imagine it could be an easy trap to fall into and so might be something to think about regularly.

    In your case you seem to have done this. You have done all you possibly can to give your son his voice. Most importantly you are telling his story in his own words where applicable and with his permission. You have then advocated for him where he himself cannot. I see nothing wrong with any of this. In fact, I would personally say you are doing the right thing.

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