Big tech, Mikey’s “phone” and the question of control.

There have been a number of issues that have been bothering me for a while and they all share a common theme or issue – and that is the question of control. More specifically who should control access to an individual’s views and experiences. Of course, the obvious and instinctive answer is that nobody should, people should be able to share their views and experiences themselves. They should have control of their own voice regardless of whether they use words, images, sign or gestures to express that voice. But the reality for many people with learning disabilities and autistic people, is that their voice or access to their views and experiences is often controlled by others, in particular the institutions in which they live or in which they are detained. The implications of this control are enormous. It suppresses people’s freedom, their right to be consulted with and it makes them vulnerable to coercion and abuse.

This issue came to light in one form, in a discussion about media coverage on people with learning disabilities and autistic people who are detained in inpatient hospitals, where the disability rights activist Simone Aspis had challenged the fact that the journalist had not spoken directly to the individuals themselves, but had instead spoken to their families. Rightful Lives, and I suspect most people who are campaigning for the rights of people detained in inpatient hospitals, are simply grateful for the coverage. But the fact is, Simone has got a point. It shouldn’t always be families having to speak up for their loved ones who are detained in inpatient hospitals. There should be greater links between self-advocate led groups and people who are detained and why aren’t journalists able to talk directly to people who are detained in inpatient hospitals, if those individuals have the capacity to consent and make the decisions that need to made?

The problem of course is the question of control. People who are detained under the Mental Health Act are people who have had their human rights suspended. Almost every aspect of their lives are controlled by the judgements and decisions of clinicians. With that control comes the ability to isolate people from the community and with that isolation comes all kinds of abuse – some prescribed and legitimised as treatment – others the expression of a form of hate.

Control and social isolation in the name of treatment also means that the right to have casual conversations with the people that you know is removed, what remains are visiting times and periodic access to phones. Perhaps that is one of the reasons why people who are detained are so dependent upon the advocacy of their families – because often the only people they are entitled to talk to and have involved in the details of their care are their nearest relatives.

So, to answer the question why aren’t people able to speak up for themselves or share their stories and experiences with their peers, or god forbid speak directly to journalists? The answer is the system won’t let them and when I say system; what I mean are the support workers, the nurses, the psychologists and psychiatrists, the commissioners, the civil servants, the politicians and the voters and the laws and regulations and the institutions that we have put in place. So, when I say system, what I really mean is us.

Big Tech

One of the other things that has been bothering me is the lack of investment on the part of big tech companies ( yes Google, Microsoft, Apple, Facebook, that would be you) into technology that can and could help to transform the lives of people with learning disabilities. My annoyance was triggered by a debate around the possible use of cameras in inpatient hospitals. Well when I say possible it would appear that in some settings it is already happening. And just for the record my annoyance doesn’t lie with the people who are calling for cameras to be installed it lies with the fact that the big tech companies aren’t even a part of this debate and I’ll explain why I believe that’s the case.

Firstly, again, it’s about power and control. The problem with trying to prevent the abuse of people in institutions (large or small) by installing a network of CCTV cameras is that you are effectively increasing the power and control of the institution. And as always it is the person living in an institution that is most likely to be subject to the abuse of that power. My issue with introducing a camera first approach to monitoring what goes on in any kind of institution, is that it takes away yet more of a person’s rights. It’s a surveillance hammer to crack a nut. Not only have people lost the right to freedom of movement, the right to freedom of expression and the right not to be pinned down by six blokes, they have also lost the right to privacy. But people do have a right to expect to be protected and this where the tech industry is failing them.
Most people will have noticed the increasing number of stories about big data, artificial intelligence, The Internet of Things and the ability of the tech companies to develop data and information about what we are doing. Technology is embedded in our everyday lives and as a result of that, the tech industry possesses enormous amounts of data about what we do and when we do it. Now I’m not going to argue about the rights and wrongs of the growing levels of surveillance that we are all now subject to. What I am arguing is that with the Internet of Things, AI and Big Data the technology exists to monitor the actions, behaviour and presence of staff without compromising the privacy of the people who have been detained or who are living in an institution. How it would work is complicated but the tech companies, government and the CQC have what it takes to crack this particular nut – the question is – will they?

Mikey’s “Phone”

It’s easy to think that all of this is just about governments and institutions. That control and isolation is something that takes place somewhere else and that supporting people’s ability to share their stories and experiences is an issue for others but actually like most challenges, they almost always find expression in our everyday lives as much as they do elsewhere. We’ve had a similar challenge with Mikey, albeit on a small scale.

Mikey is very fond of his extended family but he can get distressed if he has to travel, especially if that travel disrupts his routines. The nett effect of this, is that maintaining contact with his “family community” can be tricky. Especially given that he refuses to speak to anybody on the phone and doesn’t really seem to want to get involved in Skype. Mainly I think, because these are things that he cannot control, these are things that are being demanded of him.

Despite this we bought Mikey a Facebook Portal for his birthday. And for those of you who don’t know, the Portal allows you to video call people at the press of a button. You don’t carry them about with you like a tablet or a phone. They sit in the same place in the room and if you want to speak to somebody you walk up to it, press a button and you can. They are incredibly accessible, and the hope was that if Mikey wanted to speak to somebody who wasn’t there at the time, he could.

Well it worked. If I’m out and I want to ask him, and not the person he is with how he is, he will answer his portal (which he has now renamed- “Mikey’s Phone”) and tell me. And if there is something important that he needs to talk to somebody about he will call them. It’s still early days and at the moment he has only added a very small number of people to his list of contacts. But he’s in control, so that’s the way it should be. A thought that takes me back to the beginning of this blog.

Sometimes relatively small technological changes can change a system. What if rather than installing cameras everywhere in inpatient hospitals, or in any kind of setting for that matter, which would increase the power of the institution. Or allowing people to film with mobile phones in hospitals, which may undermine the privacy of other people in the setting. Imagine if people had a Portal or something similar, securely incorporated as a fixture of their room, so that that they always have a window on their community regardless of where they are living. On that Portal there would be a list of contacts, of people that they trust. Some of those people might be family members or parents, others might be friends or peer advocates, some might even have a contact at the CQC that they talk to on a regular basis, and some might even talk to journalists. Most of the time it would be up to them. Maybe then, we could move the discussion away from who it is that should speaking-up for people who are detained in inpatient hospitals and let people speak for themselves. It would also provide an opportunity for people who don’t have family working on their behalf to be contacted by advocates, the CQC and the public sector bodies who commission their care.

For people who are detained under the Mental Health Act, all of this would of course require a shift in culture on the part of the institutions and that is likely to be the biggest challenge. The institution’s ability to isolate and control the individual would be undermined but so would be the person’s vulnerability to abuse. Especially if done in conjunction with the introduction of some of the other technologies that I mentioned earlier. I believe that current and emerging technologies can play an important role in supporting the voice of people with learning disabilities and in protecting them from harm in a way that also protects their human rights. The question is, will the tech companies play the role they should be playing and will our government, our professions and our institutions be up for it?

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Reasonable, Rights and The Tate Attack

I was reminded yesterday that sometimes it’s the things and acts and opinions that appear most reasonable that have the greatest potential to do harm. In an opinion piece on Jonty Bravery, Libby Purves wrote an article in the Times entitled: “Tate attack shows community care is in crisis”. In the article Purves argues for the continued institutionalisation of people with the most complex needs:

Scandals such as Winterbourne View are not inevitable. There are some well run, humane residential institutions especially small ones linked to relevant charities…

She goes onto suggest that if Jonty Bravery had been in such a humane institution, he probably wouldn’t have been given permission to go out into the community unsupervised.

At a certain level Purves’ article seems reasonable, especially when compared with some of the other coverage that Bravery’s actions have given rise to, and especially when we consider the horrific nature of those actions. But the reality is that the institutions needed to protect the community from people who pose a threat to it already exist, as does the legal framework needed to ensure that those institutions are used. Government initiatives to reduce the number of people in inpatient hospitals following Winterbourne View, have always recognised that some people need to be detained and were never about releasing people who pose a threat to the community.

Something went badly wrong in this case and none of us, including people like myself who campaign for the right of autistic people and people with learning disabilities to be a part of their communities, are currently in a position to answer the questions that need to be asked. Those questions must be asked, and all concerned must be ready to hear and act on the answers.

But what people should resist is the temptation to use the actions of an individual in order to justify depriving a group of people of their right to a place in their community. Purves’ central argument that the “Tate attack shows community care is in crisis” is not justifiable. Nevertheless, it is likely to be taken up by those who are uncomfortable with the presence of people who are different in their communities. We can also expect government ministers and some psychiatrists to use it to justify their lack of progress on Transforming Care.

The act of depriving people of their rights simply because they are identifiable as a member of a given community, is the kind of act that has underpinned untold numbers of human rights abuses. Too often societies have implemented legislation and maintained regressive social practices on the back of arguments made in response to crimes and tragic events. Ways of doing things that at first glance may appear reasonable, but which over time come to be seen for what they are, an expression of fear and prejudice. Such actions never do justice to the victims of crime, but they invariably serve a political purpose.

So, if recent articles in the media are any indication, over the coming months we can expect to hear the government justifying its failures in relation to autistic people and people with learning disabilities with phrases like “complex needs” and “protecting the public”, When in reality the only thing they are protecting is themselves.

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Diversity and respect – An idea for Isabelle

There’s been a lot of talk about voice recently; about the importance of enabling the perspectives of different sections of the community. There have been discussions about how the power of families stifles the voice of people with learning difficulties. There have been conversations about wanting to change the tone of the debate about inpatient hospitals and the rights of people with learning disabilities. And a while ago I was posed a really interesting question by Isabelle Garnett. Isabelle wanted to know if I could think of a single idea around which people campaigning for the rights of people with learning disabilities could unite. Something that is realistic and achievable. It’s a great question and I’ve been thinking about it on and off for a while now and I think I’ve found an answer.

On the surface there is no single idea. People face a multitude of challenges in trying to live a rightfull life, and there are thousands of ideas about how the struggle for those rights can be fought. But despite this, it is clear that there is so much that unites us all, whether we are people with learning disabilities, autistic people, family members or friends, practitioners, providers, academics and commissioners, ultimately we are campaigning for or struggling to deliver the same thing – the human rights of people with learning disabilities and autistic people. So perhaps there is an idea, or at least a couple of ideas that we can all unite around, and those ideas would be accepting that there is diversity in approach and priority – and respect for that diversity.

In support of this idea we’ve decided that it’s time for us to launch as a platform and online magazine on which people can share their work and their campaigns. It will be set up as a Rightful Lives project and it will be for everybody, from self-advocates, to families and friends, to practitioners and the organisations they work for, to senior civil servants and politicians. Its contributors will steer its content and future direction and the guiding principles will be diversity and respect.

If you’d like to share your work or campaign and would like to contribute to then email me on and I’ll set up a login for you, and help you to get started.

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Rightfullives – Success and Failure

The thing about doing something that hasn’t been done before, is that getting it right, so often seems to go along with getting it wrong. No matter how well something is executed there is always something that you haven’t foreseen. A bump in the road, a glitch in the Matrix, something that stops you from succeeding in quite the way that you thought you would. In my mind Rightfullives was and is a success. It did something that hadn’t been done before and strangely, probably couldn’t have been done in any other way than the way that it was. Certainly not with the resources that we had at our disposal. But along with that success is failure.
I’ll be honest, I’m gutted that things have turned out the way that they have. I won’t bore you with the details of how many hours it took to build as it stands today. The time that went into building the site, the effort that went into networking and social media, the thought went into putting the individual exhibits together and the remarkable creativity of the people who shared their stories, their interests and sometimes their pain. It is a privilege to have been able to be a part of it and thank you to everybody who has been a part of the things that Rightfullives does so very well.
Over the last 24 hours a lot of people have shared their opinion about what went wrong and what we should have done differently. How we should have ignored the opinions of one of the country’s most experienced self-advocates; alternating in almost equal measure with opinions stating how much we should have listened to her. Personally, I’m not sure that either was really the cause of what went wrong. Neither do I think that the partial failure of Rightfullives was really about whether or not self-advocates are better at representing the views and interests of people with learning disabilities than families. My answer to that would be that it depends on the individual and that the best way to move forward, is together.
On reflection, I think that the mistake that had the largest role to play in the partial failure of Rightfullives, was one that we made right at the beginning, and when I say we, I definitely mean me. And that mistake was not realising that in the end Rightfullives always had to belong to the people who contributed to it. It doesn’t matter who built it or who was on “the steering group” or who did this or that for it. It doesn’t matter if they are self-advocates, parents or practitioners – Rightfullives is its contributors and in my opinion, it was not realising that sooner which has led to the problems we’ve encountered.
So armed with that knowledge, I’m going to start on the next project, which again I’ll build for free. It will probably have a different name, but it will be a child of the things that worked with Rightfullives. It will give the contributors more control over the posts they share and allow them to upload their own stories, interests and exhibits. It will be designed to be as accessible as I can possibly make it. It will have a protocol and structure that will allow it to balance risk and safety. It will allow providers, commissioners and researchers to reach out to the community of people who will be a part of it. Above all it will be a platform for people with learning disabilities and autistic people, it will be a platform for their families and for the practitioners and organisations who want to be a part of it – and together they will own it.
I’ll need lots of help.
But first of all, I’ll need to find to find a number of organisations and individuals who’ll help to fund the expenses.

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Branding Hope

We were sent some images for a new post for the Rightfullives website a while ago and in addition to the images themselves, the organisation supporting the campaign that a group of individuals had set up, had sent in their own introductory text for the exhibit that explained the centrality of its own contribution to the whole venture. It’s a classic example of PR and branding in practice, they wanted to be sure that the good work that was being done was credited to their organisation. And I guess they were successful, because whilst I can remember the name of the organisation that funded the campaign, I can’t remember the name of the campaign itself. It’s an example of the way in which people’s voices can be obscured by the needs of large organisations. And whilst this particular instance of branding may have achieved its corporate objective, the failure to make the people themselves the dominant voice and message of the exhibit, is self-evidently counter-productive. It’s an example of failing to get the right balance and the importance of not forgetting what it’s all about.

I was reminded of aspects of this when I saw the news that the Equalities and Human Rights Commission and Mencap are going to be supporting Jeremy (Beth’s Dad) in taking legal action against St Andrews Hospital. On the one hand I thought great, this is exactly what Beth needs and on the other hand, I wondered if it had the whiff of a PR exercise on the part of the two organisations. Now you might say who cares? If it works for Beth, then that’s great. The two organisations are doing what they are supposed to be doing and they are funding the action, so they have every right to a little publicity on the back of it and that’s fine. The problem, as always, is a little more nuanced than that.

The difficulty with service providers being activists and campaigners is well recognised. Sure, Mencap have a pro-bono legal advice service that provides great support to families in high media profile cases and sure there is no theoretical reason why it shouldn’t be available to individuals and families who want to take Mencap to court, but I’d be amazed if it has ever happened and in practice it probably won’t. But by attaching themselves to the campaign of the indefatigable Jeremy and Bethany, Mencap will gain important PR in promoting the idea that all people with learning disabilities and their families will have access to good legal support should they need it. And just to be clear I’m not saying that Mencap shouldn’t be doing this, I’m saying (yet again) that they should separate their campaigning and support services from their provider services, so that if somebody using a Mencap supported living service wants to take them to court using their legal support service there is less likelihood of conflict of interest.

The situation with the Equalities and Human Rights Commission is different. Again, it’s great that the EHRC are supporting Jeremy and Beth, and that support will add significant weight to the campaign. There is also the hope that any legal action may establish a legal precedent and if that does happen then it will have been doubly worthwhile. The difficulty, if it exists, lies in the reasoning that underpins the EHRC’s involvement in Jeremy and Beth’s campaign.

A couple of months ago, Rightfullives and hundreds of individuals and dozens of organisations wrote to the EHRC inviting them to take action on the situation facing autistic people and people with learning difficulties who are trapped by the inpatient hospital system. The Commission replied on the 5th of November stating:

I have read your letter with care and concern and agree that it is entirely unacceptable that people who need care and support like Bethany, featured on the recent BBC Radio 4 File on Four programme, are treated in unsuitable and dangerous conditions. Recent coverage of deaths in ATUs has highlighted the grave breaches of human rights that can occur when people with learning disabilities and autism are held in these units.

As you know, we have recently held meetings with NGOs and lawyers and with individuals who have family members in inpatient units. We have listened carefully to their concerns and are now considering what action the Commission could take. The Commission has a range of potential enforcement powers and we will determine which would be most effective in tackling the human rights and equality issues that arise in light of the evidence that we have received so far. We are grateful for your letter and will take your suggestions into account in deciding the best way forward.

I will make sure you are kept informed about how we decide to move forward

As yet the EHRC haven’t committed themselves to making this issue one of their strategic priorities and we don’t know if the action that they are taking in support of Beth will end up becoming part of a strategy and a series of actions designed to confront this issue head on, or if it’s a single action that will have the dual purpose of, supporting Beth and Jeremy, whilst at the same time making it appear that the EHRC are doing their bit to support this community’s human rights by supporting an individual family.

The appeal of this latter approach and the temptation to use it is clear, by supporting a campaigner who is as effective as Jeremy, any organisation is likely to achieve maximum media impact with minimal input from themselves. And whilst none of this should matter to Beth and Jeremy, it will matter to the thousands of others who are currently struggling with the inequities of the current system of support, of which inpatient hospitals and the abuses that are inherent within them, are just a part.

So, if the EHRC are thinking of sitting back and letting everybody else do their work for them, then please don’t. The failure of Transforming Care and the ongoing human rights abuses of people who are detained in inpatient hospitals demands system wide change and system wide action. It demands that the EHRC does its job and that all of the organisations involved, take a long hard look at themselves. The ongoing abuse of people’s rights demands that every organisation involved in Transforming Care takes responsibility for the part they have played in the lack of progress and most importantly, that they do what it takes to put things right. Because no matter how much the different organisations might want to use individual stories to brand themselves as champions of hope, the truth of it is out there, in their collective failure to deliver meaningful change and the silent abuse of thousands.

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Embracing Failure and Changing the System

I was talking to my sister the other day about being a parent. About how it doesn’t really matter how hard you try to get things right the only inevitable thing about parenting is the amount of stuff you’ll get wrong. And all you can do is your best and it doesn’t matter how many books you’ve read or classes you’ve attended, we will all make mistakes and the harm we do, or don’t do, in making those mistakes, will so often simply be a matter of fortune or a function of the speed with which we recognise or admit that we’ve got something wrong. And it struck me that there are parallels in that.

There has been a lot of discussion recently, some of it involving me, about the actions of powerful organisations working with autistic people, and people with learning disabilities. And I’ll be honest, it’s a subject around which I feel particularly torn, and around which I am particularly inconsistent. On the one hand – in a system that appears to systematically function to undermine peoples’ rights and well-being – it would be wrong not to hold the most powerful organisations operating within that system to account for their failings. On the other hand, I am uncomfortable with the idea that an organisation has to be perfect, or not guilty of certain of certain kinds of mistakes, in-order to be viewed as a good and approved of organisation.

In truth there are no perfect organisations, just as there are no perfect parents. At one time or another every single organisation that works with autistic people or people with learning disabilities will harm an individual, or individuals, in their care. The thing that will differentiate between them, is the willingness to search for their failings and speed at which they recognise that they have got something wrong.

But unfortunately, there are some organisations that are totally indifferent to the idea that they might be more effective if they did somethings differently. Or that the unshakeable faith they have in the way that they do things may actually be harming the people they are meant to serve. Yet even these organisations will be full of people who care and who fervently want to do the right thing. In contrast to this there are other organisations who will treat every mistake as if it were a wound inflicted upon a person they love, and whose instinctive response to failure is to embrace and protect the well-being of the people in their care rather than the reputation of their organisation.

In one of my recent tweets I asked if people thought it was possible to change the system without Mencap. There were a range of responses, most of them negative with some people thinking (including me) that they would never change and that their dominant position within the system would need to be replaced. And others who felt that they would be more responsive and more able to advocate for people with learning disabilities if they separated their campaigning activities from their work as providers. It’s likely that either of these options would have a significant impact on our collective ability to transform the current system of provision and with it the everyday lives of autistic people and people with learning disabilities or difficulties.

But the reality is that in its current form, Royal Mencap is an organisation that has a dominant position within the sector and an unshakeable faith in its current strategies. An organisation that has systems in place to learn from its mistakes without the compassion needed to admit to them. It is an organisation that will campaign for and support individual families, whilst at the same time it is unable to challenge government because of its role as a provider and its dependence on local and national government budgets. And because of that dependence on government, because of the failure of its leadership to recognise and embrace the mistakes they are making, ultimately Mencap will fail the people they are meant to serve and they will fail to force the change we need. Which is a shame because there are millions of people with learning disabilities and thousands of employees and supporters who deserve so much better.

Can we change the system without Royal Mencap? We can but if recent history is anything to go by they’ll try and take credit.

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Does it make a difference?

It’s been over a week now since we launched and I think it’s fair to say that things have gone pretty well. The site launched on time, we had well over 30,000 page views in the first week, it didn’t crash, people seem to like it and most importantly, for me at least, it does justice to the amazing exhibits and contributions that people have sent us. Not bad on a budget of £0.  But a couple of nights ago Mark Neary went and ruined it all 😉, he wondered on twitter whether or not the site would make a difference and there is a part of me that wonders if he may have a point. Frankly, the system is so intransigent, so good at exploiting the good will of people who are trying to make a difference, so skilled at the dark art of insincere collaboration that it’s difficult not to wonder. But deep down, in the end the optimist in me refuses to let go.

On the surface Rightfullives is about the human rights and the humanity of autistic people and people with learning disabilities or difficulties. When we put out the call to action this was the theme that we invited people to contribute to. It’s a subject that speaks to the experiences of thousands of people and their families, and to many of the practitioners who work with us. In this, I believe that Rightfulllives helps people to raise important questions about the status of their rights and whilst we cannot know where that discussion will lead, the fact that it acts as a platform for that, matters. But I think that Rightfullives matters for other reasons and please excuse a bit of navel gazing while I explain why.

About 8 years ago now I began work on a full-time PhD at Brighton University. The title of my research proposal was “Representing the voice of severely learning and communication disabled children and young people” and the purpose of the project was to research and represent the communication and experiences of people with severe learning disabilities. The idea was, that I’d use a multi-media approach to find innovative ways of representing those experiences and central to the project’s method would be the “knowledge and experience of the people who know the young person well”.

After about 14 months the project still hadn’t gone to ethics. Difficulties in navigating an ethics process that was tightly shaped by the requirements of the Mental Capacity Act meant that I spent an inordinate amount of time trying to construct a consent process that fully respected and supported peoples’ ability to make their own decisions, in a system that tended to want to see capacity in a very black and white fashion. People either had the capacity to consent to research or they didn’t. Anyway, in the end my responsibilities as a carer, stress and a discomfort with certain aspects of academia meant that I walked away from the PhD although I’m not sure I ever really walked away from the project.

Fast forward to three years ago when Mark Neary and I met at a Learning Disability Today Conference and it was there that we first had the idea of creating an online conference/exhibition that would be accessible to people with learning disabilities.  For a long time it remained just that, an idea. 7days of Action and A Trade in People came and got in the way of the idea, and in the aftermath we all fell out so it wasn’t until some-time early this year that the idea for an online exhibition was re-suggested – probably by Mark – around the ever relevant theme of human rights.

Since then the idea would begin to take form, shaped as much by Julie Newcombe’s diplomacy and compassion; as Mark Neary’s belief in the importance of human rights and the struggle for people with learning disabilities to be recognised as fully human; and my semi-subconscious wish to find ways of representing the experiences of people with learning disabilities. One of those occasions where individual motivations of compassion, rights and voice coalesce into something more than the sum of the parts.

But will it make a difference? When struggling to change a system that seems to have the inertia of a super tanker, will anything, that any of us do, actually make a difference? Whether you are talking about Rightfullives, or the continued efforts of organisations like Respond and Bringing Us Together, to keep making the case for partnership working and collaboration. Especially when we ask that question in the context of the data that the BBC published on the significant rise in the use of restraint in NHS Inpatient Hospitals and the harrowing detail of File on Four’s – “Transforming Care – is it working?”

The honest answer is that we don’t know. We don’t know if Julie’s compassion and Mark’s faith in the humanity of the legal system will ever be rewarded. We don’t know if Katie Clarke, Noelle Blackman and the hundreds of other people who work in this field, will get the commitment that they deserve. And for that matter we don’t know if Anne Webster, who has worked tirelessly on behalf of people with learning disabilities for years and her relatively new apprentice Ray James and everybody else working on behalf of people with learning disabilities at NHSE, will ever get the support from Simon Stevens and Matt Hancock that they are probably fighting for.

But Neil Crowther wrote a blog a while ago entitled “Moving Beyond A Human Catastophe” and whilst I didn’t agree with all of it, I did really like the ending:

So, in sum, I would advise that our next steps should involve:

Looking forwards, not back…

…Advancing solutions, not just highlighting problems

Putting disability at the heart of the debates shaping our collective future

Developing a positive story of change

And striving to ensure that hope wins over despair.

Rightfullives is our contribution to that. We hope it will help people to tell the stories that are hard to hear, and it will help share the joy and inspiration that is at the heart of so many people’s lives. And to ask again will it make a difference?

I don’t know – maybe we are asking the wrong people – maybe we should ask Ben and Paulette and Alexis and the guys from Heavy Load or maybe we should just listen to what it is they’ve got to say because from what I’ve heard so far, there is joy and inspiration and hope in that.


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