It’s not ok and the expendable resource

It is one of the paradoxes of parenthood. That we live for our children. The promise of their infancy, the turmoil of their teens and the growing absence of their adulthood. And though we might miss them there is something wonderfully reassuring in the emergence of independence. At least that is how it should be, because it’s different for us.

If you are the parent of a person or a child with a learning disability, or autism or both. That progression from infancy to adulthood is different. Infancy or soon after is shaped by the impact of a diagnosis. The teenage years, yep there is turmoil, often on an immense scale. And as for the emergence of independence. Where do you start?

And then lurking somewhere in the back of our minds and in the worst of our dreams. Is the thought of what would happen in the event of our deaths.  This came up in a tweet today in response to BBC Breakfast week long coverage of SEN and Disability. When a father reported having said to a social worker that if he died they might as well bury his daughter with him.

I get the horror of it. The thought that we will one day die and our sons and daughters with learning disabilities and autism will be left alone in the world. Utterly dependent upon a system that seems to excel at nothing, but the promise of much and the delivery of less.

I get the dread. That ever-present sense of something terrible, our death and their vulnerability and I get why so many of us find it hard to imagine a life for our sons and daughters without us. But we must.

Because it is not ok to imagine that they wouldn’t survive or even thrive without us. It is not ok to imagine – even for a moment – that our death would mean that they too would be better off dead. Firstly, because no parent has the right to even think that thought; and secondly because our adult child’s dependence on us is politically constructed, and so too is our sense that they cannot thrive without us.

According to a 2015 report from Carers UK unpaid carers contribute a staggering £132 billion a year to the UK economy. I don’t know what percentage of that figure is contributed by the parents of people with learning disabilities and autism, but I would guess that we care for much longer periods of time than most. And as such we probably represent the single most significant resource within the care economy for people with learning disabilities and autism.

But are we valued? You’ll hear lots of rhetoric about the amazing contribution of unpaid carers to our society, but no we aren’t. Despite all the talk of supporting carers, the parents of people with learning disabilities and autism are an expendable resource and we are the resource that gets spent first.  And the longer we last the more they save. And it’s because of this, that we have this sense of our sons and daughters overwhelming dependence on us. Because too often while we’re doing our job – too many don’t bother doing theirs.

The truth of it is, that young adults with learning disabilities and/or autism need to grow away from their parent’s in the same way that every young adult does. Their independence may take longer to nurture and it will take support and resources to achieve.  But they can thrive without us and they do. So, in those dark moments when you are tempted to imagine the worst, just remember, if everybody else does their job as well as you do yours they’ll be fine. The issue isn’t what happens when we are dead, it’s the work that people aren’t doing while we’re alive and that’s really not ok.

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Looking for a perspective – different kinds of knowledge and why they all matter for people with learning disabilities and or ASD

Ideas Learning Strategy Plan Teamwork Concept

One of the disadvantages of having studied social science and science, is that you can end up spending far too much time thinking about really obtuse things, like the nature and meaning of knowledge. But strangely, of all the things I’ve learnt in formal education it’s been one of the most useful in helping me to understand why the families of people with learning and communication difficulties matter, and why what we know matters even more.

In the sciences you get introduced to concepts like empirical observation, measurement, experimentation, data, scientific theory, paradigms, causation, replicability, hypothesis testing and proofs. These are the building blocks of scientific knowledge and as an approach to making sense of the world they are really useful and have helped to transform the world in which we live.  But the development of scientific knowledge is contested and evolutionary, some theories come and go, others are transcended by new paradigms of scientific knowledge. A theory that might seem to make perfect sense can be undermined or transformed by the discovery or observation of new phenomena. But broadly speaking science builds upon itself.

In the social sciences things are a little different. You get some people trying to do the same thing that a natural or physical scientist might do. They collect data, they observe and measure, they construct hypotheses and test, and then they develop theories about what it is that they have observed, measured and tested. Broadly speaking they think that people are subject to the same laws and principles as science and that scientific methods can be applied at least paryially to the social world. In contrast to this approach you have the relativists, post modernists and post-structuralists.  Their approach is based on the idea that there are no truths and facts, because knowledge is relative and the things we think we know, are actually a product of language and the thing that makes them true is power.

I’ll be honest coming from the background I did, my first thought on this approach to social science was that it is nonsense. Of course truth and facts exist, without them we would never have been able to put a man on the moon, or drive a care or invent computers. The post-structuralist response to this kind of argument is usually that whilst the real world may well exist we can only make sense of it through language. It is therefore only through language that the truth exists. I still have some issues with this, but it is important, and it has huge implications for people with learning disabilities and/or ASD especially those with communication impairments. Anyway, most social scientists seem to try and adopt a position based on elements of both, with varying degrees of emphasis on one approach or the other depending on their subject or specialism.

So, what has any of this got to do with people with learning disabilities and/or ASD, their families and practitioners. Well actually quite a lot. Learning disability and autism can be studied from the perspective of the natural and the social sciences. If you ask a neuro biologist what autism is they are likely to focus on the findings of studies that have identified anatomical abnormalities in different parts of the brain.  A psychologist is more likely to define autism as a triad of cognitive impairments and would use a diagnostic tool such as DSM V to diagnose and assess the severity of the autism. Whereas a good teacher is likely to focus on a person’s interests and abilities and use these to develop a learning plan scaffolded according to their particular learning needs and objectives. Whilst the neuro biologist would undoubtedly see themselves as a scientist; I suspect most teachers wouldn’t.

In between, the lives of people with learning disabilities and/or ASD are affected by the knowledge of a whole range scientists and social scientists. Each approaching the person with a viewpoint that is profoundly shaped by their professional background and with a certainty that is underpinned by their professional status. Because as much as my scientific self may rail against the notion, knowledge is intertwined with power. Professions use a combination of scientific method, language and a variety of instruments of power to define the parameters of what it is that they know and consolidate their professional status.

An important part of how that is done, is that in partnership with politicians and the state they institutionalise their expertise and in this way legitimise their interventions, often at the expense of other people’s rights. The Mental Health Act and to a lesser extent The Mental Capacity Act, are classic examples of how the power and primacy of a profession and their form of knowledge can become an instrument of the state. Each places decision making responsibility in the hands of a professional or at best a small group of professionals, and whilst there is an expectation that the professional should consult with the people who know a person best, ultimately control and power over an individual’s life rests with the professional. Even though they may never have met the individual concerned. It is inevitable that any decision made in this way will be based upon a partial understanding of the individual concerned.

Despite it’s often partial nature, knowledge that has been legitimised in this way will not only be used coercively it will also be used to marginalise challenges to their dominant ideas about the nature of things and the status of their practice. People believe things to be true because of who said something and not because of what they said.  The social status of a practitioner’s knowledge gives it an appearance of legitimacy that it doesn’t always warrant. You only have to look back at some of the treatments that have been used in the old mental hospitals, from lobotomies to electric shock therapy and as this quote indicates extensive overuse of drugs:

Sixties was an era of great enthusiasm for the new psychiatric drugs that had become available since the mid-1950s. David was chiefly prescribed chlorpromazine (Largactil) and sedatives. He was not given the ECT, insulin coma therapy, narcotherapy, and sometimes leucotomy, handed out to some of his fellow patients. In fact, he seemed to receive little of anything that could be described as therapeutic 

https://thepsychologist.bps.org.uk/volume-25/edition-5/looking-back-journal-mental-hospital-user-1960s

Some of these interventions are now rightly viewed with horror and yet some remain. All were once seen as the only way in which people in these institutions could be “treated”; they were reinforced and underpinned by science and its methods, and the institutional certainty of professional bodies. Yet time has shown them to be what they undoubtedly were: flawed and damaging. So where does this leave us?

For me the thing that characterises the weaknesses of the current way in which we support the place of people with learning disabilities, is our failure to manage and combine the different kinds of knowledge that need to come together to deal with the difficulties that an individual might be facing. In particular, the failure to incorporate the uniquely deep and subtle understanding that families often have of their loved ones. Families bring decades of experience and learning, and they will often have an almost unconscious understanding of an individual’s mood, gesture and behaviour. For people with communication impairments, they are often the decoders of an individual’s personal language and the narrators of their personal histories, and as well as that, they will invariably have a wealth of strategies for managing and dealing with a whole range of situations. Yet as we see time and time again that knowledge is not given the status is deserves in law and neither is it nurtured and built upon.

The roots of the failure to include the knowledge of families are complex. As I have argued, differences in the status of the respective knowledges are undoubtedly important. The knowledge of a psychiatrist, out-trumps that of a psychologist; the knowledge of a psychologist that of a therapist and so it goes on. And somewhere down the line you get families. And in addition to this variation in status, relationships between practitioners and families will often have soured by the time that families get to the transition to adult services. Years of battling the special educational needs system, or of being ignored by it, often leave families feeling battered or cynical and invariably labelled as problematic.

And there are a number of practitioners who are too ready to seize upon the principles of the disability rights movement and the Mental Capacity Act or plain old parent blame, in-order to stigmatise and disempower families. And one of the great shocks for the parents of disabled children, as their child grows into adulthood, is the ease with which they and their views can be set aside. The family that had to be listened to when their son or daughter was a child becomes a useful but marginal perspective in the decision making of others.

But it is too simple to paint families as the victims and practitioners as the villains in all of this. Sometimes we need to remember that most/many of the people who work in health and social care, do it because they want to improve the lives of the people they are working with (although some don’t). There are times when we also have to take some responsibility for the nature of the relationship that we have with the practitioners who are a part of our sons’ and daughters’ lives. Not just because they might sometimes deserve it, but also because it is invariably in our daughters’ and sons’ interests. But as most of us know there are occasions when it can be difficult or even wrong not to challenge professional practice.

However the problem for families is that when they challenge a practitioner they end up in conflict with the system. The challenge might come about because of a misunderstanding and the practitioner might well have been working with the best of intentions; or it might have come about because the practitioner has made a mistake and really isn’t very good at their job. Either way when faced with this most practitioners will withdraw into the protection of their institution and the system that sustains it. And unfortunately, regardless of the rights and wrongs of the situation, the system treats any kind of challenge as a threat to one of its members and will instinctively defend them, the status of their knowledge, and their practice.

The consequences for the person with a learning disability are significant because the network of support that might have surrounded them, is transformed and effectively becomes two front lines. And the person disappears into the no-man’s land that exists between the warring factions. However, this situation rarely lasts for long because inevitably the state and its institutions will take control and the family will get marginalised. The moment that this conflict begins, the real victim will invariably be the person with a learning disability or ASD, because regardless of how convinced an institution may be of the quality of its practice, if it is in conflict with the people who know a person best, something profoundly important is lost.

And the thing that is lost is not just the things that a family may know, it’s a unique kind of knowledge. It is the product of the knowledge and understanding that everybody involved in supporting an individual can bring to that person’s community of support, regardless of their profession or social status. It is the rigour of a scientist, the empathy and professionalism of a rights based social worker, the insight and experience of a parent who loves and most of all the empowered self-awareness of the individual themselves. Taken together these different kinds of knowledge can enable an understanding of a person and a situation that is far richer than any that a single scientific or familial perspective could provide. It is also more likely to respect their rights and stand the test of time.

So, if I were looking for a perspective from which to review the mental health system – I’d start with all of them.

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My Own Front Door and the living flower

One of my favourite quotes comes from one of Karl Marx’s early works: “A Contribution to the Critique of Hegel’s Philosophy of Right”. I first remember reading it in the early eighties shortly after I’d returned from Vienna and I think it’s fair to say that it shaped and continues to shape my approach to pretty much everything.

Criticism has plucked the imaginary flowers on the chain not in order that man shall continue to bear that chain without fantasy or consolation, but so that he shall throw off the chain and pluck the living flower.

Beneath the flowery language, it seems to me that it’s about the importance of criticism or critique in helping us to make sense of the world in which we live. And whilst the initial focus of Marx’s use of the analogy is on religion, the principles apply to all forms of social inquiry. And the thing that I like best about it- is its optimism. We don’t critique the world we live in so that we can endure it, we critique the world we live in so that we might make it a better place. This principle applies to everyday things and ordinary lives, as much as it applies to economics, law and politics.

For those of us fighting the discrimination that confronts people with learning disabilities, the chains take a number of forms, as do the imaginary flowers that hide those chains. Here in the UK and probably in most of the advanced economies, the chains are lower life expectancy than their peers, commodification, poverty, hate crime and abuse, indefinite detention/treatment and sometimes death at the hands of those who are supposed to provide care and support. And in-order for this disadvantage to be morally defensible in our “caring” society; these chains are held in place by a whole garden full of imaginary flowers. The tulip of complex and different, the lily of a diminished human rights and the rose of cost and best value. All fertilised by governments stating that they have spent billions on the care and support of people with learning disabilities and that we are a country that respects the rights of all its “vulnerable” communities, and in that way the chains of discrimination are held fast, and the illusion is sustained.

But for those who care to look we know that the life expectancy of people with learning disabilities is years lower than for their peers; we know that they are unlikely to get a job and we know that our prisons have significant numbers of people with learning disabilities in them. Just as we know, that despite the rhetoric of successive governments, change is either illusory or painfully slow.

And because we know, we fight to tear away the illusion and expose the chains of discrimination for what they are; and at the moment thanks to Panorama and their exposure of the abuse at Winterbourne View we are in the middle of one of those rare occasions when a government has committed itself to change, and Transforming Care is that commitment. The question is, does Transforming Care represent a genuine attempt to change things or is it just a gesture, another bouquet of imaginary flowers with which to hide the chains of discrimination and inequality?

The interesting thing about that question, is that even the government that commissioned Transforming Care probably doesn’t really know, if what it commissioned, was a genuine attempt to transform the system or a politically necessary response to appalling media coverage. If you look at the data in my last blog on how Transforming Care is being implemented in different areas; what is clear is that its successes are as much dependent upon the commitment of local areas as they are on the directives of national agencies.

So, I guess the answer to the question: Is Transforming Care another bouquet of imaginary flowers or a genuine attempt to nurture change? Would depend on the commitment of the people in your local area and how willing they are to change the way in which they do things. It will also depend on the ability of all concerned to imagine creative solutions to the problems that they face. Their ability to move money around the system and their willingness to accept challenges to the way in which things are currently being done.

As families, practitioners and activists we all play a role in this, and we have to ask ourselves what kind of role we want to play in whether or not Transforming Care delivers. Are you a practitioner or civil servant waiting for the day that the latest policy fad has passed you by? Or are you somebody who stands on the side-lines observing the efforts of others, pointing at the chains and everything that is wrong, waiting for the day that it will fail? Are you indifferent or do you want to play a part in making it as good as it can be?

The political reality of our times, is that Transforming Care is likely to be the best opportunity that we will get, at least for a decade, to improve the lives of people with learning disabilities and/or ASD. It isn’t just the government’s responsibility to make it work; believe it or not they really don’t have that much direct control over the way in which things are done in local partnerships and agencies. But each one of us can make a difference. It doesn’t matter who you are, if you want to play a role in making it better than it would have been, you can.

This coming January a group of us are going to be launching My Own Front Door, we want to use it to bring together the work of everybody and every organisation who is working to improve the lives of people with learning disabilities and/or ASD. As one part of that, we will be creating 48 sub-domains or mini-websites, one for each of the Transforming Care Partnerships so that people with learning disabilities, their families, practitioners, organisations and researchers can share the work that is being done in their area.  In this way we can challenge those who are waiting for Transforming Care to pass them by and provide an opportunity for those of us who have grown tired of raging at the chains, to nurture the living flower.

If you’d like to be a part of that get in touch with us at: contact@myownfrontdoor.net

 

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The bungalow at the end of a path.

I was listening to a practitioner a while ago, who was talking about a person with a learning disability who lives in a bungalow at the end of a path, far away from the main buildings of an inpatient hospital. They are there because they are deemed to be too great a risk to themselves and to the wider community. They are there because they have been sectioned under the Mental Health Act. As far as she knew that individual, that person never left the bungalow, never received visitors and had been forgotten by the system. It reminded me that for every parent that is fighting to get their son or daughter out of one of these institutions there are many who are not or cannot.

There is no judgement in that but it does give some indication of the scale of the challenge that we face as we fight to change the system that places people in inpatient hospitals far away from their communities.  Because as hard as it is to get a person out of an inpatient hospital when they have somebody advocating for them, that challenge is so much greater when they have no-one but the system to struggle for them. And how realistically can they expect the system, that put them in the bungalow at the end of the path to free them, when peoples’ attention and empathy is focused elsewhere.

Whilst we rightly focus on the stories of individual people and the campaigns of their families; permanent change will only really come about if it happens for everybody.  As we have previously argued, the current inpatient system has effectively allowed people with learning disabilities and/or ASD to become commodities in a healthcare system that has often been shaped and structured by the needs of the – for profit independent sector –  rather than the needs of individuals. Despite this structural issue, an issue that stacks the system against the rights of people with learning disabilities and/or ASD, things are beginning to change and if we are going to change this system it is important that we recognise where progress is being made.

Inpatient_totals_by_TCP

The graph above shows the numbers of inpatients for the different Transforming Care Partnerships for the period between July 2016 and May 2017. The statistics are taken from the Assuring Transformation data releases. The thing to look for, are the columns that slope from left to right. Where this is happening, it shows a reduction in the number of inpatients for a given TCP for that period. Looked at in this way we can see that progress is beginning to be made across a number of the TCPs, although not all. The strongest left to right slopes and therefore the greatest reductions in numbers are seen in the Fast Track Partnerships. This is perhaps unsurprising, they will have received the most funding and will have had more time to bring about change. The best examples of these appear to be Cumbria and North East, and Manchester. It also indicates that other partnerships such as North Central London, and the Sheffield, Doncaster, Rotherham and North Lincolnshire TCP are starting to show reductions in inpatient numbers. When taken together it is probably fair to say that Transforming Care is starting to make a difference as can be seen in the graph below – which shows the reduction in the overall number of people with learning disabilities and/or ASD in inpatient hospitals since Transforming Care started in 2015.

Inpatient-totals

These are relatively small steps but I think it is fair to say that in some parts of the country Transforming Care is beginning to make a difference and now three hundred people are back in their communities. But there are still too many and it is likely that the majority of the people who have been able to return, will have benefitted from higher levels of transformation funding, and the systemic improvements that have come with a number of the Transforming Care initiatives such as CTRs and STOMP.

We also need to remember that many of the people who have returned to their communities will also have been supported in their journey, by families, who will have fought tirelessly to get them back to their homes and to keep them there. In many ways, it’s probably fair to say that this reduction in numbers represents the “relatively” easy wins, although nothing about this will have seemed easy to their families and to the many who continue to struggle.

What is clear is that the struggle to transform the care and support of people with learning disabilities and/or ASD has a way to go, and there are undoubtedly many who think that the progress has not been fast enough – and it hasn’t – but some things are starting to work. And if we want to change anything it is important to acknowledge the things that are working, just as it is important to recognise and challenge the things the things that aren’t. Because if we don’t the people who are fighting to make the system a better place will stop trying and there is a person detained in a bungalow at the end of a path who will never get home.

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Goodnight

Every night for as long as I can remember Mikey performs the same ritual at the end of the day. He switches off his computer and packs his bag. In go the headphones, the Ipad and the Ipod, the adapters and chargers. He checks that he has got all of his Slinkies and starts humming the Brum theme tune.  He looks around the room in the same way that the garage owner does at the end the early Brum episodes, checking that everything is in its place, before switching off the light. He then leaves the room with the statement “and off he brummed all the way home”, continuing to hum the Brum theme tune as he goes.

If I’m in the room when it happens, I’ll be left sitting in the dark. No television, just Mikey humming to himself upstairs. If his brother is there the humming will be accompanied by the sounds of an alien life force getting blasted out of its virtual existence in the front room. The humour of it still makes me smile. Just as it calms me no matter what may have happened during the day.

Somebody wondered the other day what my motivations where for working with 7daysofaction. The suggestion was that I was using it as a stepping stone to something else and that as soon as it had served its purpose I had resigned and moved on. My immediate response was outrage with a large measure of righteous indignation thrown in. How dare they doubt my integrity? Had they any idea of the amount of time and effort that I had put into this?

Of course, they hadn’t and nor should they. And I guess they have every right to question my motivations. Just as I might to question theirs. The brutal realities of human motivation rarely survive close and honest self-examination. Had I seen the work with 7daysofaction as a stepping stone?  Had I chosen to leave the campaign because I had taken that step and had what I wanted?

I don’t know what their answers to these questions are and genuinely don’t care.

For me, the answers are found in the moments after Mikey has switched off the light. Moments that define my life. Moments of calm and humour juxtaposed with an awareness, that just as that ritual gives me joy – it confines me – I cannot choose to not be there. I cannot choose to be in the pub or the gym or away on a business trip. I must be there when the light is switched off and he Brums his way home.

So perhaps my work for 7daysofaction was a stepping stone; a stepping stone out of the constraints of that moment. A search for a kind of freedom and self-realisation out of the contradiction of the moments that define the lives of so many parents who have become carers.  And if that is the case had I got what I wanted from 7days and decided it was time to move on? Except there is no moving on from the joy and the constraint and the moment, that is both peace and prison.

But there is gratitude. Gratitude that I am sitting there, listening to him hum. And that I do not have to endure the horror that so many families do.  Knowing that somebody else is in control of when they can and cannot see their son or daughter. The horror of knowing that they can be restrained and drugged for resisting the rules of the institution in which they are detained and of not knowing when it will all end. Or that it may even end in their death.

Gratitude and the knowledge that their horror could so easily be ours.

I won’t stop fighting for the rights of people with with learning disabilities and/or ASD, and for their place within our communities.

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Waiting for the bus and the spectrums of ish

We walked to the supermarket the other day, and Mikey had misunderstood something I’d said and was agitated. So it was one of those shopping trips where we attracted a lot of attention. He was loud and bouncy and on edge and keen to get it over and done with. The obviousness of our difference plain to see. My attention was on him, but on the periphery of my gaze I caught glimpses of people stopping and heads turning.

After we’d paid for the shopping, we walked out into the spring sunshine and crossed the road to the bus stop where we waited, sitting on a wall. I’d worked out what it was that was bugging him and he‘d calmed down by then, and he hummed away to himself, occasionally commenting about one thing or another. And I daydreamed about people and difference and the spectrums of ish.

I’d read Steve Silberman’s book Neurotribes a while ago and liked it; well I’d liked most of it. It’s insightful compassionate and it has achieved what it set out to do and popularised the transformation of the way in which we think about people who think differently. It got me thinking about the idea of neurodiversity and the lines that divide being neurologically typical or divergent.

The term neurodiversity was originally used by Judy Singer in her thesis in 1998 and apparently Harvey Blume used the idea in an article in the New York Times. I haven’t read that but Judy used it to describe the emerging idea that disabled people with autism, ADHD or some other diagnosis or condition are not “broken” they are simply neurologically different. Since then the term has been used by high functioning people with autism and Asperger’s to build a social movement; a campaign for the rights of people who are neurologically diverse and in my opinion that’s a good thing.

But the use of the term and the growth of the neurodiversity movement has also gone hand in hand with the popularisation of the terms neuro-typical and neuro-tribe, and in doing so it has led to the emergence of oppositional tribe like identities. These I am less comfortable with. People are either neurodiverse or neuro-typical and whilst that binary makes it easier to establish a movement and resistance to the discrimination that autistic people face, for me like all tribal identities it oversimplifies the complexity of all people and exaggerates the importance of difference. Steve’s book asks us to be smarter about people who think differently but doesn’t everybody think differently?

Anyway after a fairly long wait the bus had arrived and whilst most bus drivers around here are pretty friendly, this particular driver wasn’t. But, Mikey didn’t notice and he likes buses, and he did his usual thing; so every time that somebody pressed the stop button he called out “stopping”, in a voice loud enough to be heard the length of the bus and he interspersed these with comment’s about how dirty my ears are. Which they are not but he knows it embarrasses me so he does it to amuse himself.

The responses to Mikey’s commentary are varied. Some turn around to look briefly; others look and smile sharing the humour of the moment. Some will laugh at him. Often people who are sitting close by will stare straight ahead or immerse themselves even deeper into whatever virtual reality they are engaged in on their phones.

I sometimes wonder what it is that they fear, what is it that they imagine that he will do. I wonder how many see in him the qualities he may share with them: humour, love, understanding, courage, skills, strengths and failings. Or do they simply see the divergence and the difference, a member of another tribe – his otherness juxtaposed with their sense of their own normal and typical. And I guess that’s why I have a problem with the whole concept of neuro-tribes, it delineates arbitrary categories of difference. It draws hard lines where there should be shades of neurological variety and richness. It encourages people to retreat into those tribal identities rather than embrace the diversity of what we all are.

As the father of two young men on a particular spectrum and the uncle of another. I understand too well the impact of hard lines and the tendency of those who aspire to belong to one tribe or another, to use language and difference as a weapon or way of dealing with uncertainty. I’ve lost count of the number of people who have felt the need to diagnose or who have dealt with a challenge to their sense of normal by staring straight ahead and hoping the challenge and difference will go away. The psychological equivalent of staring at their phone as they struggle to stay within the security of their imagined tribe.

But are there really neurological tribes or are there simply spectrums of difference? Rainbows of neurological colour and diversity, where neuro-type is not a tribe or identity but simply our own particular place on the spectrums of ish.

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Dusting Ourselves Off

After posting the blog on My Own Front Door we had a huge response, some of it very positive and some less so, in fact to be blunt it got pretty heated at times. So after careful consideration, we think that it’s best not to proceed with My Own Front Door as a 7daysofaction project. It’s still a good idea and a number of people and organisations are thinking of taking it forward as a new initiative and I’ll be supporting them in that just as I’ll be supporting the families at 7daysofaction.

So where do we go now with 7daysofaction?

Well as recent events and posts on the have shown, despite the rhetoric about improving the system, too much is as bad as it was, and as always it’s people with learning disabilities and their families who are living with the consequences. There are plenty of people who want 7days to fail but the need for 7daysofaction is as great as ever so we need to start working on our next campaign. Well – I’ll let you into a secret, we’ve actually been working on it for quite a while now.

As I said in my last blog, last Summer we put in a freedom of information request to NHS England to get the financial information from the Transforming Care Partnerships and with a lot of help from Elaine James and Chris Hatton we’ve been analysing it. We’ve already sent off an academic paper (well, Elaine did) but we are now approaching the point where we need to start using some of the information we have produced for our next 7daysofaction campaign.

But rather than just writing a series of blogs on the finances of the system, which would be pretty dull. What we want to do is to share families’ experiences around a number of themes and use that to illustrate the impact that money and economics is having on people’s lives and the struggle to get people home, or keep them at home. We want to weave the two together and bring the data to life with your stories. We want to remind people that every argument they have about who should be paying for something has very human consequences.

There are three themes that we want to be part of the next campaign:

  • The impact of distance on family life
  • Fighting about money and the struggle to get home
  • Local provision and support

So we want you to tell us about your experiences on any or all of these themes. Unlike previous campaigns, all of the experiences that we share will be done anonymously so you don’t have to worry about people using the information you share with us against you.

We’ve created a web-page on our site where you can tell us about your experience so that we can build it into our next campaign.

Click here to tell us about your experiences

OurNextCampaign

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