Intellectual disability and the fight for justice

Prominent UK campaigners George Julian and Chris Hatton visited Melbourne ahead of the “Dying for Change: Improving the lives of people with intellectual disabilities” event on 12 November. Dr Andi Horvath caught up with them after the event for a chat about why there are still so many preventable deaths among people with learning difficulties, and what needs to change. 

When a young man with an intellectual disability died from inadequate care in a psychiatric unit in the UK, his family, with the help of activist and London School of Economics Fellow Dr George Julian, launched an awareness campaign that soon caught the eyes of Chris Hatton – Professor of Public Health and Disability at Lancaster University. Now, they’re both working together to reduce the number of preventable deaths in people with an intellectual disability everywhere.

Andi Horvath 
Where are we with disability, intellectual disability, and wellbeing in society?

Chris Hatton 
I think we’re in a place, certainly in the UK, where we know much more than we did. I think the poor health of people with intellectual disability was very much a hidden problem, in the UK certainly. So, I think we’re starting to know more, but we’re not at the point, I think, of really getting society and health services to appreciate the rank unfairness and injustice of this.

Andi Horvath 
How prevalent is intellectual disability?

Chris Hatton 
In the UK, we don’t really know the numbers of people because lots of people aren’t known to services with that label, and some people may not want that label. But we’re talking probably around two per cent of the population, so around a million people in England.

Andi Horvath 
As with most conditions, there’s a spectrum of people.

Chris Hatton 
Absolutely, so it’s a hugely diverse range of people.

Andi Horvath 
George?

George Julian 
I’d agree with Chris in terms of, I think we’re more aware in the UK. We’ve had a number of relatively high-profile deaths of people with what we would call a learning disability, or the profile of their premature death has been raised by their families, campaigners, and activists. So, I think we’re aware that it’s an unjust issue. I don’t know that we’ve mainstreamed that issue for most of society yet. In terms of Australia, I think people who work in the sector are aware of the issue. I don’t think society knows, and I don’t think society’s appalled, and I think it should be.

Andi Horvath 
Chris, you started doing some research in this area, getting evidence towards intellectual disability, wellbeing, health, mortality, with the view of turning it into public policy. Let’s start with the research.

Chris Hatton 
Yes, the research. Obviously, there’s a huge group of people that’s an international group of people now working on these issues. I think it’s fairly well-established across a number of countries that people die much younger in ways that they really don’t need to if they were looked after properly.

Andi Horvath 
Why is that?

Chris Hatzis 
A whole host of reasons. So, going back from health services, so people are discriminated against by professions. The way that routine health services work really don’t work well for people with intellectual disabilities in the main, but then we need to go through to much broader issues of society in terms of, I guess, people with intellectual disabilities are more likely to be in the kinds of circumstances that are bad for any of our health. Poor education, unemployment, poverty, poor housing, loneliness. All those issues are much more likely.

Andi Horvath 
Tell us how you went about the research and what it revealed?

Chris Hatton 
I think, in terms of the research, we’re pretty – we’re kind of scavengers, really. We look for whatever information we can find and how we can use it. So, we haven’t been able to build up a complete picture. So, some of it is looking at health service systems and what information they have. Some of it is looking from large-scale surveys and what we can learn from those. What we haven’t done much of, and what we need much more of, is really understanding people’s experiences of those systems as they go through them.

Andi Horvath 
George, something I know you’ve been working on – and Chris, you’re a part of this as well – is the Justice For LB campaign. For those who’ve not encountered it, explain it to us.

George Julian 
Okay. So, LB stands for Laughing Boy, which was the online pseudonym given to a young man called Connor Sparrowhawk. Connor’s mum, Sara Ryan, wrote a blog about their family life called My Daft Life, that’s available if anybody wishes to look at it, and Sara’s blog documented their family life as it was, just this family of fun and travel adventures and whatnot, and part of that was life with LB, who had autism and epilepsy. Sara’s blog documented their family life, and as LB – as Connor got older, he came to be leaving school, and some of the anxiety that came with that not really knowing what the future held made him quite stressed and anxious, and his behaviour deteriorated a bit, and his family asked for support from healthcare, asked what they could help them with.

The answer, or the end result, was that Connor was admitted to what we call an assessment and treatment unit, which is a psychiatric unit where people go, in theory, to be assessed, to have their experiences, their health, their behaviours, looked at, and a plan pulled together to how they have a good life, and then in theory they leave, and go back into society, and have that life.

Connor was in this assessment treatment unit. It was run by an organisation called Southern Health NHS Foundation Trust, so it’s part of our National Health Service, and he was in there for 107 days before he drowned in the bath. Connor’s death was entirely preventable. His parents had been engaged in his care. They’d tried to raise their concerns with the healthcare staff, and since Connor died, over the last five years the campaign has developed to – initially to raise awareness of what happened and to raise funds, because families have to pay for their own legal fees when everybody else is paid for by the state, and then as time went on, Connor’s mum and family wrote something called Connor’s Manifesto, which spelled out what they would like Justice for LB to look like, and part of that was to ensure that other deaths of people with an intellectual disability were examined, and to check what was going on, and it was to raise awareness and demand justice.

So, lots has happened over five years. There has been a lot of – people came together to mark the 107 days that he’d been in the unit the following year. People adopted a day, and they raised money, or they raised awareness, or they had – they did various different things, sponsored things. There was music, there were parties, there were academic lectures. So, lots of different people contributed to the campaign.

Since then, there’s been a review of all the deaths in that healthcare trust, which they requested happened, and that found that only one per cent of deaths of people with an intellectual disability received any sort of internal scrutiny, and 0.3 per cent of deaths of people over the 65 who use mental health or learning disability services, which comes back to this inevitability that some people will just die early. So, if you’re 65 or over, you know, forget it.

Other things that have happened in the campaign – there’s been lots of fun stuff as well. We’ve walked part of the Camino in Spain with a red bus. Connor liked buses, and there’s a cardboard cut-out bus that has travelled the Camino in Spain twice now, and there’s been lots of work to engage with people with an intellectual disability and figure out what they would like to improve their lives. Part of that was, we drafted a private members bill. We crowd-sourced that, to try and change the law. I guess there’s lots and lots that’s gone on, and we also live Tweeted Connor’s inquest. So, for the whole two weeks when the jury were present, we Tweeted what happened in court to raise awareness of the real detail of the end of his life and his death.

As a result of some of what’s happened with Connor, there have been various policy changes, various people have spoken in parliament about things that will improve, or that they hope will improve, but also other families have come forward. The media have been brilliant. Journalists have allowed us a platform to share, or provided a platform to share people’s experiences, and now more and more people are speaking up rather than just accepting this poor care.

Andi Horvath 
Chris, how did you get involved in the Justice For LB campaign?

Chris Hatton 
Through social media, really. I guess I was just following what was going on more and more, and I just felt a compulsion to try and chip in, I guess, in any way that might be useful. I don’t know if it was useful or not, but we chipped in. There’s all sorts of odd things, like we were trying to understand what was happening in the NHS trust, so we were wading through papers of board meetings trying to understand, I guess, the context, the history, how some – you know, some of the background to why Connor’s death had happened.

I think one of the really important things for me is that in all sorts of ways, it just reveals a landscape of systematic institutional discrimination across inquests, across health services, wherever you look, really. So, that gives quite a lot to do, but then there’s plenty of us working on it.

George Julian 
Connor’s mum, Sara Ryan, has written a book called Justice For Laughing Boy that talks a lot about Connor, his life, who he was, and also touches on the campaign and what we’ve done since. So, if people are interested, it’s well worth a read.

Andi Horvath 
Avoidable deaths is an extraordinary thing to actually even say in Western society, at least. Are avoidable deaths happening because these people are alone? I know more and more of the population is living by themselves. In fact, it surprised me the other day, the figures were – I think it was one in four. We all know people with intellectual disability, and we all know people on the spectrum of that. Is the problem here living by yourself?

Chris Hatton 
No, I wouldn’t say so. People with intellectual disabilities are actually much more likely to get the opportunity to live by themselves than other people, so there are almost always other people around them, whether that’s family, whether that’s people paid to support people in various ways. So, absolutely not living alone. I guess the worry, the real worry, is how little all those people around them, who are often paid to support people, actually don’t take people’s health seriously.

So, they may not notice that somebody is in pain, or in distress, or they might put the kind of behaviour that anyone would do when they’re in pain – you know, a toothache makes me extremely cranky. They might put that down to some kind of mental health issue, or a challenging behaviour, and thereby not investigate the physical health issue in the first place. When those issues are potentially explored, investigated, people are less likely to be treated in a way that’s actually useful.

George Julian 
Yeah, one of the things I’ve done is live Tweet inquests, coronial inquests, when someone with an intellectual disability has died and their family have managed to secure an inquest, and there was one in February this year of a young man called Richard Handley. Richard was well-loved and well-supported. He was a mischievous kind of personality, and he had his family very involved in his life. He lived in care provision. He lived in what you would call a group home, and he had had problems with constipation since birth, and he was just 33 when he died, and he died as a result of unmanaged constipation.

Now, to die from constipation in a developed country in this day and age still fills me with absolute horror – my brain cannot compute it – but at his inquest there was two weeks of evidence, and what became clear was that Richard was failed at every level by everybody involved in his care.

So, his family had raised concerns, but his carers had understood that he should see a doctor, but not the urgency of it. He had been seen by a psychiatrist two days before he died, but he hadn’t seen the urgency of it. When he reached the hospital they didn’t see the urgency of it. So, I think there’s something about, even if people are well-supported, even if people have lots of people in their lives, if you’re not able to communicate, if people – medical health professionals – are not understanding your communication, if they put all of your behaviours down to some sort of challenging behaviour, then they’re not going to treat the physical illness. With Richard, his death was entirely preventable, and it was just as a result of failings at every point of his care.

Andi Horvath 
I’m going to ask what may seem like an awkward question, but what I’m trying to do is explore the dimensions of why this is important to the public, emotionally, socially, politically, economically. Why is it important to the public?

George Julian 
I guess my argument would be because people with intellectual disability enrich our society, and we’re poorer for not having them within it, and we’re poorer for not having them treated well within it. I think it’s a shame on society that we can’t do better. Economically, providing poor healthcare just makes your health worse, which costs more money. I mean, Chris can talk to the numbers – he’s better at that than me – but I’m fairly sure there’s a strong economic argument that we should provide people with good care.

I don’t believe anybody goes into support work or healthcare work intending to do a bad job. I think most people want to do well by people, but we have got ourselves tied up in these systems or in these attitudes that prevent that happening. So, I think on every level we need to improve this, and I do think it’s a matter for you, and I, and anyone on the street, because this could happen to anybody who we know and love, and it’s not acceptable.

Andi Horvath 
Chris?

Chris Hatton 
I think I would just add that people with intellectual disabilities are the public.

Andi Horvath 
George, what drives you?

George Julian 
I guess…

Andi Horvath 
You’re passionate about this. I know, I can feel it.

George Julian 
I am, I do really care. I’m just angry. I mean, I don’t think anyone ever thinks that’s very healthy, to be driven by anger, but I care. These are people. I’ve met people with intellectual disabilities in Australia in the last week who, if we don’t change these things, could be dying years earlier than they need to be. I’ve got friends with an intellectual disability who I want in my life. It’s selfish. I can’t get my head around the fact that this inequity exists, and we allow it to. So, I guess I’m driven by a deep sense of inequity, and that enrages me. But I’m also driven, I suppose, by the families who I’ve worked with, or who I’ve spoken to, who are just – you know, they’re faced with such immense grief, and yet they’re all wanting to improve things for other people, and I think that’s very powerful.

Andi Horvath 
Are there pivotal events, if we reflect on the making of an activist in society, that perhaps shaped your sense of getting this out there to society?

George Julian 
I guess I should say, I would never have labelled myself as an activist or a campaigner until the last year or so, because other people kept doing it. I was like, okay, I’ll take that title. I think – I don’t know what the events are. I guess, for me, the deaths have been absolutely pivotal. Seeing the faces of these young people, and they’ve all mostly been young people, younger than me…

Andi Horvath 
Yeah, where were you at the time?

George Julian 
When I heard about these deaths?

Andi Horvath 
Yes.

George Julian 
So, when I heard about Connor’s death I was at home. I was reading his mum’s blog, and I’m quite comfortable with death and dying, but I just didn’t – I had no words. I just had no words. I’d followed Sara’s blog for a year or two. She had been blogging the whole time that Connor was in this assessment and treatment unit, and it was almost like watching a slow-motion car crash. She had predicted that this might happen. She actually wrote a blog that said she was worried he would drown in the bath. So, I think when it happened, there was just a sense of inevitability, and just – I felt sick. It makes me feel sick, and I’ve spoken to many families since and rarely do I lose that kind of horror when people share the details.

Andi Horvath 
Were you working in healthcare at the time?

George Julian 
Well, no, I was – so, I was working for a charity that gets research, knowledge, and evidence into social care and healthcare practice, so we work with local authority social workers, and we try to upskill them with evidence. So, I was very much involved with knowledge transfer work, however my dad was terminally ill, so I’d already decided I was going to quit that job to spend time with him. So, I kind of was in a space where I knew I wanted to make a difference, and I knew that managing staff and budgets wasn’t it, and this – I guess I never viewed it as such at the time, but I guess what happened to Connor and Justice For LB was a very concrete example of knowledge transfer.

I mean, that sounds so crass, but it was enabling to use some of those skills to try and actually get a message to a wider audience. But again, it was – the whole campaign in Connor’s memory was completely organic. There was no plan, there was no strategy, there was no budget, so you can look back in hindsight and describe it as such, but at the time I think it was just, we need to do something. Let’s try anything.

Andi Horvath 
Chris, what motivates you? What’s pivotal for you?

Chris Hatton 
In the mists of time, when I was a student, there was a course run by people who were working out of an old Victorian institution, and that was really instrumental in terms of firing a sense of injustice, and how things could and should be different. So, that kind of started me, I guess, working in the area. I became an academic because I couldn’t do a proper job, to be honest. It’s kind of – it’s a kind of expensive form of social care for people like me. But over time, I think I became a bit separated from people, and it was actually, again, the Justice For LB campaign that I think really radicalised me, I think, really connected my professional me to my actual human me, connected me much more with people with intellectual disabilities, with parents, with campaigners. So, I don’t know if it’s obvious from the outside, but it feels like from the inside that was a really radical turning point for me.

Andi Horvath 
I’d really like to hear from you two about the types of misconceptions people have about this particular area of society.

George Julian 
I think one of the biggest challenges, people assume people with a disability are ill. So, they think that they’re frail, or vulnerable, or ill, and they assume that people will die early. Now, the consequence of an assumption, whether that’s from society or medical healthcare, is that if people assume you’ll die early, then the treatment they give you means that you will die early, potentially. So, in the UK we’ve had a number of cases where people with an intellectual disability have been given DNRs, so Do Not Resuscitate orders, without any consultation, necessarily, and I believe you’ve had similar cases here. Actually, I can think of one or two, where there’s just an assumption that somebody – you know, they have this phrase that it’s a release, or they’re in a better place now if somebody dies early if they’ve got a disability which, to be honest, is due to people’s ignorance about the quality of life that people with an intellectual disability can have, and most people with an intellectual disability – in fact, probably all that I’ve ever spoken to – are absolutely wanting to exist in society and wanting their lives. But if we assume that people are ill, or frail, or don’t really have a very good life, then we’re going to make assumptions and treatment decisions based on that.

Andi Horvath 
Chris, misconceptions of society?

Chris Hatton 
I think that people with intellectual disabilities aren’t active agents in their own lives, that they cannot be the authors and write their own script of life. So, I think society really doesn’t encourage, and doesn’t allow people to express themselves and their full potential in terms of what they want through their life.

Andi Horvath 
The counter to that is, what surprised you about this particular area of research and society? What pleasant surprises have you encountered?

Chris Hatton 
For me, just meeting more and more people with intellectual disabilities. I’m absolutely convinced that leadership can and should come from this group. I know so many people in the UK who are equipped, and ready, and willing, to really lead something major, and I think I would put people with intellectual disabilities really in charge.

George Julian 
I would just absolutely agree with that. I’m not sure on the pleasant surprises from the research. I think one of the surprises that I – it’s not a pleasant one, that I find all the time is how willing researchers are to keep researching, and keep finding the same evidence and the same problems without necessarily feeling it’s their role to change that, and I think it was interesting what Chris said earlier about the campaign reigniting or connecting the academic him and the human him, and I would just implore more researchers and academics to try and make that connection with their work.

Obviously, some people do that, but I think too often in research and academia we can want to keep a distance from us and our topic. We want to appear rigorous. We want to appear to be a bit scientific, and that, I think, can be dangerous for people who we’re researching if we’re not researching with them, and genuinely supporting them in what they need.

Andi Horvath 
In some of the discussion we’ve had here today, it’s brought up the element of unconscious bias toward intellectual disability, but it’s also – perhaps, behind that statement is a notion of people’s understanding of quality of life. How do you explain it?

George Julian 
I guess – I mean, I guess for me, I would – I wouldn’t see issues of quality of life for myself as any different to anyone else, and I think that’s the real issue. If you have an intellectual disability, you have the absolute same human rights as I do, or anybody who doesn’t have an intellectual disability. So, I think that’s the issue, really. The issue is that we don’t recognise people’s human rights equally at present.

Chris Hatton 
And I guess it’s that there are diverse routes to that. One of the brilliant things about being in Melbourne for a while, walking around the streets, is just how diverse things are, and how much that enriches, certainly, Melbourne, and has enriched my meals, certainly. But that kind of – you know, everyone’s different, and that’s good, and that’s a good thing. We want more of that.

Andi Horvath 
Has the mental health industry trailed behind the physical disability industry? What have you seen change over the last decade?

Chris Hatton 
I think that’s a really good question. In terms of fighting for people’s rights, people fighting for their own rights, I think people with intellectual disabilities have often been slightly left out of broader movements, and I think it’s really important that people can connect to those broader movements and feel welcomed by them.

George Julian 
I guess I would also just comment that I think people with an intellectual disability may have poor physical health, they may have poor mental health, they may not have either, and I think the distinction between physical and mental health is a service system distinction. It’s not – it’s a societal – it’s a box that we tick. Actually, people need to be considered in their entirety, and I think that’s a real issue for people. Just because you have an intellectual disability does not mean that you necessarily need any access to mental healthcare or physical healthcare, but when you do you really need that care to be responsive to your needs.

Andi Horvath 
What would you like us to think about next time we encounter intellectual disability? Or, what do you really believe needs to be done? I’m putting you on a soapbox right now. What do we need to rethink?

Chris Hatton 
I think it would be great if people didn’t have to think anything, if people just saw people like anybody else.

George Julian 
Yeah, I guess I would just like that if you – if and when people encounter people with an intellectual disability, they just find out their name and a bit about them rather than label them, or work in that way. I think people have – they will tell – people with intellectual disability will tell you what’s important to them and what they would like your help with. It’s not really for us to do.

Andi Horvath 
Thank you for making us feel like we’re part of something bigger, and that we’re all together in on this. Thank you, Chris. Thank you, George.

Thanks to Chris Hatton, Professor of Public Health and Disability at the Centre for Disability Research, Lancaster University, UK, and Dr George Julian, freelance knowledge transfer consultant and Visiting Fellow at the London School of Economics. And thanks to our reporter Dr Andi Horvath.

Eavesdrop on Experts – stories of inspiration and insights – was made possible by the University of Melbourne. This episode was recorded on November 12, 2018. You’ll find a full transcript on the Pursuit website. Audio engineering by me, Chris Hatzis. Co-production – Dr Andi Horvath and Silvi Vann-Wall.

Eavesdrop on Experts is licensed under Creative Commons, Copyright 2018, The University of Melbourne.