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.
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?
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?