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Here I’m Not

November 30, 2016

Yesterday I attended the Learning Disability Today conference in London. It was very well attended, had some excellent speakers and tried to tackle the big subjects in the learning disability world.

So why did I feel more and more uneasy as the day wore on? With a handful of notable exceptions, most of the speakers didn’t have a learning disability. Most of the messages were along the lines of, “Things are really shite but we have to keep fighting”. Co-production was very popular but it was fundamentally about what can we do for you. It was, where are we, five years on for Winterbourne View?

Sorry if it appears like I’m always knocking them but Mencap had a stall amongst the exhibitors. A few people with downs were wandering around, wearing t shirts with ” Here I Am” emblazoned on them. It smacked of dressed up dolls. Surely the fact that the people were there said Here I Am. It didn’t need the rather patronising costume.

But it focused my unease because in spite of the good intentions, for the vast majority of learning disabled people, their t shirt would have read “I’m Not Here”.

I was asked to speak in a panel session about our experiences of having a personal budget. I was acutely aware as I spoke that I was presenting a narrative purely from my perspective. Nothing to do with Steven who I don’t think has a view on personal budgets. The budget is a pain in the are for me but its not for Steven. In fairness, I was making the point about the inaccessibility of personal budgets but it was about me. When I sat back down, I realised that for Steven, the conference was inaccessible too. The train journey would have triggered a meltdown before he’d arrived. The huge crowd at the venue would have brought about a sensory overload. Steven prefers talking to listening but he would have had nothing to say. He wouldn’t be joining the call to ” give us a voice”.

In a way that’s okay. Its not his arena. He can claim “Here I Am” in other places. So possibly, my unease is all about me?

I bumped into Mark Brown and we bunked off to the bar at the adjacent hotel and played with the idea of an alternative learning disability conference where Steven and his peers could have a voice.

Without a T shirt.




From → Social Care

  1. But have they got ‘good intentions’ ?

    MENCAP, Learning Disability UK etc are largely funded by the government.

    And, we have seen by the MCA implementation, Care Act only providing carers assessment, not support, and, the commissions of only large monopoly, often venture capital backed community/independent living, that the only government policy, is to create, as many learning disabled as possible, as each has a potential of millions in care costs, that can be claimed in their lifetime by private for profit providers.

    So how can anyone, least alone, these charities oppose this policy ?

    Whilst NAS postured campaigns like ‘I exist’, ‘Tolerate difference not indifference’, along with the Autism Act, which requires expensive, now effectively impossible judicial reviews by individual unlegally aided families, to enforce, all this happened on all these charities watches.

    Ask yourself, why 3 a day are dying.

    Why we have so many Thomas Rawnsley’s unseen, so many in institutions, now to be all private including hospitals, no attendance to their physical needs, but practically all medicated with a strong mix of anti psychotic drugs, when most, are not, or were not, until the drugs were enforced, suffering from a mental disorder..

  2. simone aspis permalink

    run by who – parents (mainly by non disabled professionals and parents) – we do not need another non disabled peoples collective to run a conference for us! What is the resistance about People 1st and other speaking up groups run by people with LDs – Again why is your focus again on Mencap – why is there is a constant ignoring of people with LDs lead work. Please use your energy constructively – stop giving such groups power – I have learnt that.

    • Simone – I think you’ve missed my point. I think who runs the conference is irrelevant. I don’t feel People 1st would have represented or presented Steven’s voice better or worse than anyone else. It would still be inaccessible in present conference formats.

      • simone aspis permalink

        Please do not compare our user-lead groups with big charities – there is a world of difference between People 1st (self advocacy) and big charities such as Mencap, DSA and NAS….

  3. simone aspis permalink

    Okay okay – please do not forget that real campaigns are lead by people with LDs lead orgs – People 1st were successful with securing people with LDs civil and human rights under Equality Act (DDA) and Direct Payments. Also People 1st were successful to move the emphasis from presumption of mental incapacity to mental capacity of people with LDs in the Mental Capacity Act – Please stop relying on big charities – our organisations need support and allies – so why not support people with LDs lead work – you do not get People 1st running silly and tokenistic campaigns. I am sadden that no one seems to really value the good work that our movement has done – Please remember that the rights your children have enjoyed has been because of the hard work that our groups have done. Yes there is still a lot of work and our rights are under attack – People 1st still retains its principles.

  4. simone aspis permalink

    Mark good you have responded and recognised that our groups do exist – I will write more fully later on.

  5. frannie permalink

    I share your opinions Mark, I feel we are also given Lip service as parents but in a workshop to speak in 5 minutes, why aren’t the families up with keynote speakers, so many concordat meetings x years on, families still have same concerns

  6. Helen permalink

    I feel like that about my son – he has his voice in the space and time he is in – for different reasons much of the LD circus is not accessible to him. so if it’s big decisions about policy he’s never there.

  7. simone aspis permalink

    Famoneless like I have said to Mark – you want to know why none is being done – its because parents expect the big charities to do something. Maybe its time for you guys to find other allies – ones that do not sing to the tune of Gov, ones that do not have millions behind us. I used to spend too much of my energy shouting that the big charities do very little to promote our rights. These days I much prefer to spend my energy fighting for our rights via the Disabled Peoples movement. The LBBILL a lot of good ideas there – but everyone either thought they could do it by themselves or with BIG charities – so I wonder its time such campaigns look for support from the user-lead movement. Please I share the same issues as you do about the big charities – but I look to the user lead movement to support our struggle for rights, even when its not as active as it once was – thanks to funding foundations (non statutory ones) that no longer want to fund campaigning organisations.

  8. Pauline Thomas permalink

    Simone I admire your energy and the capacity you have to fight for the rights for others to have a voice in how their lives are led. It must seem like walking through treacle trying to change hard held attitudes that society has about people with a learning disability.

    However, my son sadly has not got your capacity to fight. He cannot read or write and the conference that Mark attended would have, like Steven, sailed right over his head.

    We his parents are his advocates and unfortunately, after many years of fighting his corner and running with the baton, we find that sometimes, when we are weary that there is a shortage of people to pass the baton to, or even to find people who know how to run with the baton.

    My son needs support to do a lot of everyday things, (that was not always the case), but he has said when he is with the support worker he likes “I like Ed because he talks to me’ Sometimes thats all it takes to make someone feel human.

  9. room enough for any number of conferences led by whomever disabled or not as long as equality and human rights for all is the focus. There is a whole hidden army of people that would find it impossible to attend/participate in conferences but remain supporters for change.

    Isn’t it ok that those that are willing and able to participate do so , like Steve many people are neither wearing the shirt or taking the platform which seems reasonable enough. Self advocacy is great, not so great if someone decides it is the path you should follow for you !

  10. weary mother permalink

    1. Professional people mainly attend conferences to have their knowledge and beliefs confirmed.?

    ………and – also – to meet and commune with kindred spirits. And have a day from office.

    2. . Parents at conferences are entertaining – are clapped – when tell their stories – but not if stories tamper with professional certainties.

    1.- Changes nothing very much – but is a good day out ,,,,away from crises and the office – but only if sacred beliefs stay same.

    2. Changes nothing.,,,, for families should not know – very much about their own sons and daughters – or use the stories to confront professionals with their sacred assumptions and certainties.

    Nice day out. Pity about the parents….

    Why would anyone want to inflict this on their sons and daughters ?

  11. simone aspis permalink

    Pauline I do not just campaign for others – Like your children I have been labelled as having LDs. Just like your children I have attended special schools and have had my capacity questioned etc. I have experienced many of the barriers and assumptions made about your children. I see the commonality as well as the differences between people with LDs. Like your children I have been disabled by society – the barriers created by society. I do reccgonise that society needs to be structured to enable all people with LDs to be fully engage in society. Yes I do recognise that the support your children receive will be different from what I need – and that is just okay. This should not prevent people with LDs from joining up the dots between their own and others experiences of oppression. One good example is where many people with LDs with differing abilities can experience deprivation of liberty because of lack of support of varying degrees. One can have a milder LD and severe physical impairment or someone with a significant LD and no physical impairment having insufficient support to participate in society in a meaningful manner –
    Just because I may have a type of capacity does not mean that I and others can not understand how others can have a voice in different ways. One of the reasons for why people with LDs campaigns are not as effective as they could be is because parents somehow see there is a difference between the big P and the small P – I do not – I see the two needs to be combined effort – Our campaigns can get dismissed very quickly because parents can not see how our struggle for our rights can be undertaken at different levels in different ways under a united voice. The LBBILL campaign would have been a fantastic opportunity to bring the big P and the small P together where people with LDs with different abilities can be brought together in a united voice.

  12. simone aspis permalink

    Okay all of you have views that LD organisations including People First do not currently represent your childrens voice. So why not work with us to better include your daughters and sons voices more effectively in our work with the aim of having a more united voice. All I seem to read is parents complaining about what big LD charities are not doing. What is the resistance towards helping speaking up groups to learn how to better reflect your daughters and sons voices so that there are others who know how to do it better.

  13. Pauline Thomas permalink

    Simone I consider my wrists to be severely slapped by your response to my post. Quite rightly too.

    My son has physical as well as intellectual challenges. so I consider he has a foot in each camp. In the past we joined Scope for some needs Mencap for others.

    However we found that lots of people with physical disabilities felt uneasy about integrating with people with more intellectual needs, almost not wanting to be seemed to be like them. Discrimination can pop up anywhere.

  14. Pauline Thomas permalink

    ……and another thing Simone before you start to berate parents for not being more proactive, some of them have not got the luxury of doing exactly what they want with their time. Many are actively doing their loved ones personal care as well as trying to take care of their loved ones emotional wellbeing. (that is the hardest task of all)

    Many have been doing this for many many years and have put their trust in Mencap, Scope, Nas etc for help. Sometimes misguidingly, but we clutch at straws.

  15. Well, People First would have to understand people who can’t self-advocate, and parents can do that for their children like no one else, as they know them and can read the communication as others can’t.
    It’s about joining forces, Simone, and these websites tell us how powerful the parent role is. I can’t see that we’re not working together. I think we are.

  16. simone aspis permalink

    wow wow I am unsure why you think that I and your children have different capacity between us and therefore makes the distinction between those who can or can not self-advocate. I see speaking up as a broad rather than a narrow concept that encompasses different ways of communication (including non verbal) at different levels (personal level, institutional policy, a legislative or society’s values level) It’s an integrated model – I can easily see how your sons and daughters frustration and anger being expressed against being in a ATU is directly linked to the LBBILL campaign – after all if your children did not express their frustration then there would be no campaign on why things need to change. The only distinction I would make between the level rather than the capacity that one has to speak up for oneself in whatever form. I also do not make a distinction between the level of speaking up in a hirarchal sense as any change requires people working at different levels that are all equally important. Whenever I campaign for change at legislative level – I am always expected to provide not only research but individual peoples experiences. And therefore there is an integrated rather than a incremental approach to what is meant by speaking up.

    Parents are always the best advocates sometimes but not always is from the experiences from disabled people with LDs – I am sure that is the same with non disabled children – some will and some will not think their parents are the best advocates.

    Working with others – its good that People 1st is being acknowledged here – my comments were aimed for parents who have chosen their time to challenge big charities – and that maybe the energy they spend on trying to get the big charities to do something differently could more usefully be spent working with disabled people with LDs lead organisations. For parents who do not have the time or have chosen not to engage with other organisations my email was not aimed for you. I accept and respect that some parents will only have the time to ensure their children’s needs are being met and being supported to be part of the community. So this is not about parental bashing – but rather to ask parents who do engage fruitless with big charities to employ a different strategy and one that could weep the results that parents want for their children, a better and more fulfilled life – a life without a struggle.

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