Sara Ryan on grief, justice and righteous anger
The Wintering Sessions with Katherine May:
Sara Ryan on grief, justice and righteous anger
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After Sara Ryan's autistic son, Connor, was sectioned and admitted to a residental mental health unit, there seemed to way to get him out again. And then, one morning, he died after having an epileptic seizure in the bath. Convinced that negligence was to blame, Sara began a campaign that not only brought the local authority to justice, but also put Connor's humanity at the front and centre. Sara talks about righteous anger, the urgent need for change in our care system, and how friends and family can help you to endure.
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Please note the transcript is automatically generated and may not be completely accurate.
Katherine May 00:07
I'm Katherine May and welcome to the wintering sessions, the podcast that sets out to learn from the times when life is frozen. This week I'm talking to Sara Ryan, the researcher and campaigner who's harnessed the raw power of maternal grief to change lives. After her autistic son Connor died in a residential mental health unit, Sara was convinced that negligence was to blame. She began a campaign that not only bought the local authority to justice, but also put Connor's humanity at the front and center. Sara talks about righteous anger, mother blaming the urgent need for change in our care system, and how friends and family can help you to endure.
Katherine May 00:58
Sara, welcome to the wintering sessions. I'm so delighted to have you. I've been following you for I think years now, and like watching in slight awe at you're campaigning after the death of your son, Connor, and I just was desperate to invite you onto the podcast for the second season. Because I think people need to hear your story. But I also think that this is still such a hidden thing that so many parents are actually going through so many parents have lost children in the system. And I really hope that at some point, people will be more interested in listening than they are now. Yeah, so first of all, tell me about Connor. Whenever I see a picture of him, I think God he was a handsome lad wasn't he. He was a looker.
Sara Ryan 01:47
He was he was he was really funny actually because he was one of those babies that was that you know you get those babies where you just want to eat their cheeks It was such a cute baby and he was such a cute toddler. And then he sort of when he got into about 9 or 10 he he just changed the way look to develop this camera smile he just bare his teeth at the cameras we've got this great long stretch of photos of color with his "Say cheese" smile when we didn't really want him to say cheese. And then he just blossomed into this beautiful young man. He was it was quite funny. His looks become more important since he died. Oddly, because his personality was so enormous.
Katherine May 02:29
Yeah, yeah,
Sara Ryan 02:30
He is so quirky, so generous, so funny, so unusual that he was just a presence. You know? It's It's odd that Yeah, the looks thing is funny enough, Richard, I was saying just the other night, because every so often is fight to crops up online and show you sort of thing. You know that those problem photos or whatever, you know, we just didn't realize that how they would come to symbolize something so sort of enormous. Really. Yeah, he was great.
Katherine May 02:57
Yeah, I mean, it's lovely to have those those photos. And I loved your description of him, wearing like a police high vis jacket. And, and swimming goggles outside of the pool.
Sara Ryan 03:11
We've got a photo holiday in France, where the whole family my mum and dad sort of put some sort of great big house, we all went and there's photos of mealtimes because I always took a lot of photos anyway. And everyone's just sitting there eating whatever it is, they're noshing on. There's Conner with a shower and a pair of goggles. and nobody's paying any attention. You know, we're all just eating it again, that's retrospective at the time, I wouldn't have even I would have taken all those photos and none of us would have sort of commented on it because that's just what he did, then it becomes more sort of significant now looking back and you sort of think when you're living in a family where you've got such joyous difference. You don't appreciate it really you just get on with it.
Katherine May 03:51
Yeah, it's just just life but you've got is it five children you've got
Sara Ryan 03:55
Yeah, there's Rosie, William. then there was Connor, Owen and Tom. quite close in age because Richard and I had two kids each I had Rosie and Connor, he had William and Owen and we had Tom together so we had like, and we watched a bit of an old home movie yesterday at Christmas dinner. Everyone was about 8 down, Thomas was about two or three and the noise. I was just watching it now. Every day was like a massive. Just noise from the moment they woke up woke up hilarious I must sort of snip some of those up and send them to the family because it's just a was just saying to Rich. My God look at that chaos . And of course whenever we went out with Connor as well, because he's behavior outside he could really depending on what happened you could be in a really brilliant mood or he might something might really distress it. You can never anticipate and so we could be out somewhere I don't know really British War Museum and just lying on the floor, just beside himself and everybody else is just doing stuff and oh dear it was a real childhood for them.
Katherine May 05:04
So Connor was autistic.
Sara Ryan 05:05
Yeah.
Katherine May 05:06
and so what age did you did you realize that it was it? Was it something that was really obvious from when he was very tiny?
Sara Ryan 05:13
Yeah, that's, that's really interesting because he was just I sort of noticed that he because he was so good. I just could not get my head around this baby who just like literally I could have I wasn't working. I was doing a degree at the time, like, I did take him into classes. Just think this would be content, just look around. And so I actually contacted went to the GP and got referred to a pediatrician when Connor was about 18 months to sort of say, you noticed he's not walking, he's not talking. He's just very, very, very good. I got laughed out of the guy's office, which was a bit embarrassing
Katherine May 05:45
Which is a bit of British Standard response, right Apparently?
Katherine May 05:49
I really I really worry about them. I know. I mean, I don't think it's changed that much actually. And I really worry about the messaging that parents receive, like in the early days of identifying autism, because it seems like you know, unless you already have some knowledge of that world, what you're hearing is an incredibly negative message that, you know, people carry forward, like people struggle to let go of that idea that their child is somehow like broken or malfunctioning. And like don't find the joy in those children as they would do if they hadn't heard any of that stuff, I think,
Sara Ryan 05:49
He's just a boy. I'll catch up, get over. And then about Yeah, just weeks later, at his 18 month checkup with the health sister, she sort of gave a cross to every box as in alarm, alarm, alarm, alarm alarm, and then it was downhill for quite a long time, because then you get tipped into it. And I hope it is different now. But I suspect it isn't tipped into a space in which there's something very wrong with your child. And it's wrong, wrong, wrong, wrong. wrong. That's already here about. So that takes a bit of shaking off.
Sara Ryan 06:53
Yeah, no, I completely agree with that. And it is terrible. Because it was even to the extent I had a baby manual at the time, as you do that I'd have with Rosie and Connor at that point, he, anything in the baby manual that sort of said, you know, if you're worried about x, y, and z , look at the help section at the back, I was just like, wow, he's he's not even in the baby manual anymore. He's sort of like he's completely other. And like you said, you don't have any knowledge of disability or autism or whatever your child is diagnosed with you, you really draw on the you know, the sort of current thinking at that time, which which was, this is a terrible this, we need to fix this, you know, Conner has dropped off a cliff, and we need to get him back. I mean, that is such a terrible time, I think because it's two things there. I think a, you don't really understand your child, so you're misunderstanding them. Which can be really difficult for the child at times when Connor would sort of go into complete distress at the time, I just be like baffled. Why? Why are you? Why are you so distressed. But when you start to understand, well, it's because of the lights or is because of the noise or we couldn't reverse the car for years, it would send them into sort of it was so distressing. So you've got a parent who doesn't understand their Child. So can't ease the world for them. and then you've also got like, you say, you've got this sort of period in which you sort of mourn you almost mourn and it's horrible, and you lose the joy, and you just see things with a different lens. And then eventually you catch up, and then you realize as you meet other parents and everything sort of shakes down and you sort of think, well, this is fine, you know, my child isn't the problem. It's everybody else around them.
Katherine May 08:22
I think that's the answer for all of life
Sara Ryan 08:25
You don't really lose those years at all. And I've written a second book for health professionals and social care professionals, where I'm sort of really trying to say, when you give a child a diagnosis, it should come with a rule sort of aspirational. You know, your child has the capacity to do X, Y and Z and be whatever they want to be rather than this is the end of your child's life wait for the future.
Katherine May 08:47
Yeah, it's really striking and, you know, really is still going on. So Connor was also epileptic, which I don't know much about epilepsy, but it seems like it's quite hard to identify from talking to other people whose children eventually get a diagnosis. It seems like it takes a while.
Sara Ryan 09:05
Yeah, I mean, it's that's epilepsy still strikes fear into me and I, with Connor, he just had these very strange moments where he would just completely disappear. And the one the most notable one was when we're watching "Up" and he gets so emotionally involved in films, and when there was mild peril to Grandad on the Disney film. Conner just literally shut off and we thoughtwell that's very odd. And then it happened a few times. So then we sort of go to the GP, and you get batted back and there's something around children who are autistic and Connor also had learning disabilities, which means they don't really have real epilepsy like other kids. so when you eventually get a diagnosis, which types of tonic clonic seizures, repeated tonic clonic seizures in Connors case, ambulance is coming. I mean, I'm not a medical doctor and like I say he's actually got epilepsy. This is a tonic clonic seizure.
Katherine May 09:55
And they're the ones where you have convulsions, right.
Sara Ryan 09:57
Yeah we sort of like. How you would imagine lying on the floor convulsing sort of like really, really nasty. But then like Connor when he finally got diagnosed, he got some sort of medicine from the 1950s, which never changed. He had epilepsy for about two years before he died. And then he never went to like this first fit clinic at the hospital, he never got any of the mainstream epilepsy treatment, he just got locked like upset of horse pills, basically, even when he was in the unit, and that terrible sort of 107 days, he spent there. Because I went to visit him every day, pretty much or one of us would always go everyday, sort of seeing that he'd had a seizure, because you could tell him that a seizure because he'd be completely sort of shot away, He'd often bitten his tongue and stuff and sort of saying to staff, he's having seizures, you know, you need to be careful and to find out after Connor died, that they'd completely discounted this, and sort of actually said he wasn't having seizures was just oh, I mean, you know, as a mother, you just you spend your life just protecting your children, you will lay down over trying to protect your children and to find out that was such a careless sort of cruel disregard.
Katherine May 11:13
Yeah, of convenience really, and like I, you know, reading so probably should tell the story before we get into this discussion. But hey, let's let's, you know, let's let's do this now, but like reading your book, what really struck me was that the people who were supposed to be caring for him, like, almost couldn't read him, but had no interest in doing that, you know, like it was, they didn't see it as part of their job to understand him, or to try and, you know, work out how to make things better for him. They were just holding him and managing him. It's just really heartbreaking to see that.
Sara Ryan 11:50
I know, it's really because when we found out about the unit Because Connor had sort of suddenly become very, very distressed and very concerning behavior, and it was an NHS unit, it was something like 3 or 4 thousand pounds a week, there was a staff of 24 experts, including learning disability nurses, OTs, dieticians you know. You still think, well, this is going to be gold plated care and treatment here, short term assessment treatment. And like you say, once he was in there, and I don't blame the staff, particularly because the whole the culture of the place was just diabolical. But they didn't. They didn't care. It was literally a holding place. But funnily enough, it was two student nurses. And at Connors inquest, one of the student nurses evidence, she said she was told off because she talked to Connor too much because he was so entertaining and fun to be with. And they actually sort of said to you don't spend too much time with the patients and you think, Oh, my God, you've got five patients, there's massive staff. You've always got four members of staff on duty and don't talk to the patients.
Katherine May 12:49
So dehumanizing and it's just depressing.
Sara Ryan 12:54
The only thing is one thing that sort of hold on to a few things, really, but one Connor had a one of those small video cameras I can't remember they where quite trendy.
Katherine May 13:03
Yeah, yeah. I can't think whatever call but yes, I know, before everyone had them on their phone. we all used to use these little funny cameras, yeah,
Sara Ryan 13:10
Like a little pocket thing. And we get it back after he died. And it took me ages before I could look at the film, because I was just dreading what he might have filmed. And there was a couple of bits where he was just filming in his room or whatever. And then there was one but we just sort of slowly filmed him giving the finger to the door. {Laughs} You cute little kid, you know, you still got your spirit even even in that terrible place.
Katherine May 13:41
You know, actually teenager and that's, you know, that like, with all the dehumanizing with the, you know, sound like the sentimentalizing that comes hand in hand with that of learning disabled kids and autistic kids. But actually, we need more stories about kids flying the bird. Because all of that is there, you know, it's just that we erase it.
Sara Ryan 14:02
I know. And it was like, when he was younger, we used to laugh so much, because I mean, we, you probably know I swear like a trooper, but we didn't really let the kids swear when they were younger, and Connor would just walk out of the room every now and again. He just sort of say oh fuck right off. We just couldn't you could not keep a straight face to sort of tell him off. It was just hilarious. He was the person he really was. It was just brilliant. He really knew his own mind. And he just is great.
Katherine May 14:32
So the unit, let's talk about the unit. He was taken into that after his behavior became quite troubled. And presumably nobody quite knew what to do about it immediately. And but one thing was there, he was kind of stuck.
Sara Ryan 14:48
Yeah, I know he. It was terrible, because in the end he had 2 or 3 months of really troubling behavior, that's the nice way of calling it. But then he punched his teaching assistant who had looked after him for years, so Sort of supported him, and he punched you in the face in a rage at school. And he'd been suspended a few times. But that just seemed really worrying and that his behavior at home is very aggressive. And his younger brother was obviously quite much smaller than him. And in the end, a friend told me about this unit, because we didn't know about it. Another irony. It's only about a mile away. And it was short term assessment treatment. And it was sort of presented that it was going to be two or three weeks to work out what was troubling him what was the problem here. And so we took him literally admitted him as a voluntary patient though he wasn't voluntary at all, he obviously didn't want to go. That evening, I got a call about midnight to sort of say that he turned on a nurse and he'd been sectioned. And oh, god, it was, it was awful, he was restrained. And that whole thing is just so upsetting. And so he had a month, so that immediately gave him a month. And then it just, it just sort of drifted on and drifted on. And we tried to arrange meetings to come to some sort of resolution. And they kept talking about these different sorts of meetings. And they were all acronyms, and it just drifted on. And eventually, there was a meeting arrange for the 8th July, which was i can remember they call it an all professionals super gold standard meeting where a plan will be made for Connor to come home with relevant support and help work and all the you know, the minutiae of the details. And on the 3rd July, rich went to see him because I was at work, and then dinner. It was him. It was Andy Murray playing tennis, I remember that. And I was interviewed for work, because I'm a researcher. And we interview people about the health experiences, and we had a research assistant. And she'd asked, she asked to interview me for practice. And so that afternoon, on the third, she interviewed me and film me talking about Connor, which was really funny, because I've never been interviewed about him before. And it was an interesting process as a research because I kept like, going down certain routes was talking about things, and then I bring it back. So it gave me quite a lot of insight into what it's like to be interviewed.
Katherine May 17:01
On the other side of the chair.
Sara Ryan 17:02
Yeah, the other side of the chair. It was quite interesting, but it's really sad, because of course, he was locked up in this hospital still. And then the next morning, I went to work, and just got a call to say, you know, I mean, the psychiatrists rang me. And I just been to pret bought me lunch. But I always remember this is such a strange thing as you remember that I put my lunch in the fridge and I'm not to put my lunch in the fridge sort of person. God knows why I remember that.
Katherine May 17:28
Something about the strangeness of that day
Sara Ryan 17:31
The strangeness that I've actually put my lunch in the fridge. And then just got this call to sort of say are you busy sort of thing ..fucking hell.
Katherine May 17:40
There's nothing that you would be quite busy with for that conversation.
Sara Ryan 17:47
Could you come to the hospital, Connor is on his way to hospital. And it was just it was it. It was well I just can't, I still can't really talk about it because you just thought of you just have not left the building. It's going to catch the bus first. And she said that because I sort of said to her is he breathing? She said he's been found in the bath and I remember sort of saying is he breathing and she said something like that something this they've got he was breathing when he left in the ambulance or something really peculiar. That didn't really tell me anything. So I left work sort of got to the bus stop then throught actually I better get a cab. And then I rang the administrator at work Completely baffling behavior by me, just to sort of say Caroline, I'm just on my way to the hospital, you might wonder why just walked straight out. And she said, Wait, I'm coming with you. Which was really good. Because I had no idea what I was doing. Then we've just sort of sat on this blooming cab going along the Banbury road to the jail. And I was just remember sort of thinking, Wow, you know, is he gonna? What's gonna happen? What happens? If you have? Is he is he going to be in a coma? Or is he going to have some sort of injury? Is he gonna? This is what happens. They're not gonna. It's not going to knock his brilliance out of him. Is it? You know, just my mind? Ridiculous then of course, we didn't have any cash on us either of us. Oh, it's just and then she shoved some euros in this poor taxi drivers hand. Bunch of screwed up euros at the bottom of a bag is what we like 2p or something. And then that was it. It was it was what it was. That's that that's, that's how you find out.
Katherine May 19:28
And he was 18. And as it turned out later in the inquest into his death, he'd already died at the unit.
Sara Ryan 19:37
Yeah, I've a friend of mine works at reception at the jail. And she knew before I did, yeah, she I spoke to her afters about that because I because they did CPR and it's all this chat still isn't about the resuscitation. Then she said that there people do. Medic paramedics will try and resuscitate children. But yeah, the thing was, we found out after because you piece it together. There was so many strange things that happened. But Connor have been given a tour of the Oxford bus company, which he'd always loved his support teacher who punched did arrange for them to give them a tour. And it was that morning. And so he got up early, obviously, God knows what the staff were what happened in that unit. But he got up and he went and had a bath and the bathroom was downstairs next to the nurse's office. And the two nurses were doing an online Tescos order. And we have no idea how long he was in the bath. We have no no idea about anything really, though. The inquest people didn't really answer or they sort of gave conflicting evidence, and so you just don't know. So basically, just in an NHS hospital, he just was left to drown.
Katherine May 20:43
It's just horrifying. And something that had never happened to him in his whole life at home. And in a in a unit that is supposed to be incredibly well, staffed. And, yeah, It's just tragic. I am having a little cry with, you... sorry, Hours of conversation with people just grizzling. So it seems that that pretty soon after this awful news, like you're still digesting the worst news anyone can possibly have to digest. But very, very soon, you're advised that you have to make legal moves very carefully, because the system will be invested in covering up what's gone on.
Sara Ryan 21:34
Yeah, I mean, the the key thing I suppose was that I was writing a blog about our family life called My Daft Life, which started off in about 2011, just for friends and family really, because of the funny things that happened all the time. And it was just a set of snippets of like tea time banter. And when Connor went into the unit I started sort of I literally wrote entries, day one, day, two day 16, whatever. I didn't realize that I was creating a record of what had happened. But at the same time, the blog got quite good readership and it went beyond. lots of people were reading it. And the day he died, I don't know about six o'clock in the evening, I suddenly thought I need to let people know he's died. This is terrible. So I just wrote a one liner sort of saying Connors died in the bath or something. And apparently got in touch kaylin Gallagher, she messaged me on Twitter and said you need to get in touch with inquest, because you may well find that the state does not respond very well to things like this. And the NHS or whatever state body it is. And that was a that was such a shock on top of the state. Yeah, I couldn't quite believe that because I sort of thought was the NHS You know, there's going to be gold plated sort of already working out what's happened to it, you know that that was given to me at that point. And so I fell in touch with inquests within a day or two, and they got, they were brilliant and lined up a Solicator calle Charlotte Haworth Hird at Bindmans, and she sort of laid out very clearly what we needed to do, which wasn't what we expected. And part of that was to raise money to have legal representation at Connors inquest. And did you made it clear that we will probably face quite a battle. And she also said things like, you need to get Connors medical records as soon as possible is really chilling. had to deal with it was it was awful.
Katherine May 23:25
They are experienced in this and you are not so they have this advantage. That shouldn't be an advantage. But it is.
Sara Ryan 23:32
Yeah, exactly. And also, of course, the Trust's are really experienced in it, because it happens all the time. They've got their own in house legal people. And then they've got this army of really unpleasant barristers that they draw on.
Katherine May 23:42
Imagine being that person.
Sara Ryan 23:43
It's funny is the inequality is Stark, and all we had really was a leaflet from the hospital, from the coroner. Sort of basically just saying, you know, there'll be an inquest from the coroner, No information whatsoever. So we did actually get the, all the records and that was I mean, even that process right at the very beginning was they sort of they made a big thing the trust my mum was dealing with them, so I couldn't just could not do it. Obviously. She was sort of toing and froing and they arranged to sort of email me all Connors records from the unit. But they sent and they sort of made a big thing about passwords, and then just sent them all completely over. 23 emails with different documents in and it was, it was just I read those documents. I just remember the tears at my keyboard was just the tears almost hitting the screen. flying out of my eyes, just reading about his Connors time in there the way in which the staff just ignored him and the times he asked them if he could go in he just wanted me to pick him up and take him home not just Oh, God. So harrowing to read all that stuff, as I said, but then you have to become a sort of expert and you see on Twitter, those families going through this at the moment with Inquest. You have to become a mistress or master whatever of all these notes and documents Because it's families that pin it down in the end.
Katherine May 25:03
Yeah. Yeah. And that's the end of the system, isn't it? You know, I I'm endlessly hearing about people fighting to get their child the support they need in the first place for years and years, and then fighting for that support to not be like fundamentally negligent and abusive It just doesn't. The fight just doesn't end really.
Sara Ryan 25:25
It really is. And it's, and then they use that that sort of the fact that you've had to fight so hard that then gets twisted and used against you when horrifically wrong, I was painted as this sort of... I was called toxic woman at Connor's Inquest, and really difficult and scary. And this and I was thinking, I mean, one time I've just before Connor went into the unit, I was howling down the phone on the crisis line, because I was absolutely terrified about what was gonna happen. And I was just like, what sort of crisis line is this? If you can't, if you can't help, you know, what, If the crisis line doesn't work. What the fuck is left, you know, sort of, and yet that gets to go with a very, very hostile on the phone. She was sort of screaming on the phone so well yet that's because was a child upstairs banging their head on the wall.
Katherine May 26:14
I wonder how they think parents should react. In these moments when there's no support available. Everybody is passing the buck, and their child is in massive distress. Like what do they think parents are going to do? Just go? Oh, alright, then. Sorry. Sorry for bothering you. Thanks. Bye.
Sara Ryan 26:33
I know the sort of timidity you're supposed to assume. And the obedience is when you're faced with something that is so terrifying. But the because the funny thing was when I was writing the blog and the bits the build up to when Connor was in the unit, I talked about an appointment we had before Connor went into the unit, which was a sort of crisis type appointment. And it was such a ridiculous point. And Rich doesn't hold back. I'm a bit better in person than he was just furious at this point, because this woman was just "have you tried to star chart". And in my blog I worte, I called her Dr Crapshite I had an appointment with Dr Crapshite today and that was 20 minutes we'll never get back and Jesus Christ but what what happened which we didn't know again and it's still really to us gets upset about this was that the the unit because I made a complaint before Connor went into the unit sort of like this, this is there is no support and complaint, I put a link to the blog to sort of say that these are this is what we've been going through, it's all documented and this got back to the NHS unit, and this Crapshite thing went down really, really badly At Connor's inquest, the barrister for the responsible clinician who wasn't doctor Crapshite though everybody there thought it was. It was a different person. She you know, the barrister when he was questioning me was sort of saying things like, what did you think that calling people doctor Crapshite was really going to generate decent care for your son. I was just like, Listen to what you're saying?
Katherine May 28:03
Yeah. So you can withhold good care. Because you feel slightly insulted by my response, it shouldn't be relevant.
Sara Ryan 28:11
You were incapable of good care anyway. And now you've got in a huff over Dr Crapshite. It was almost funny in the inquest, because it was a lot of people turned up support as my life my choice and self advocates came every day, obviously, friends, family, people traveled a long way to come. And some of the moments were, I mean, we're sort of hilarious, really, because they, they're so pompous, these people and they're so they don't see that a child has died. They don't see that they've got a greiving family in front of them. They just see win, win, win, and that Dr Crap... I mean, it was just like, Oh Jesus.
Katherine May 28:45
I mean, it would appear once you're at the trial stage, you know, that actually that nickname was pretty well justified.
Sara Ryan 28:55
Actually, everything I wrote in that blog was true, but then that was interesting as well, because you've got the medical records, which, you know, a lot of them are obviously written after Connor died. So they do quickly fill in observation, records and stuff like that. But they're all fact in an inquest, a medical, anything written down by a health professional is fact. And the only thing a family says is anecdote. So it's very, very easy to dismiss, especially when you've got bereaved sort of like devastated people to dismiss. It's very easy, because I had this contemporaneous record, that our barrister who was brilliant Paul Bohn QC, actually managed to get the coroner to agree to admit my blog as evidence. Right. So that was another reason why we managed to get accountability because it's very difficult to get if you say, Well, I remember I told the nurse X. it's very easy to say, Well, yeah. But if you've actually got it written on a daily basis, and it does show exactly what happened and I wrote about kind of having seizures, you know, before he died, so that blog has had a funny role in it all.
Katherine May 29:58
And it's well actually I think what really interested me was that the kind of use of like blog and social media became really key to the to the whole proceedings, because there was a, they were trying to kind of criticize the kind of mobilization of people online about it. But it seems that that actually ended up being a massively positive movement that that is, you know, still trying to bring about change now, but clearly not wanted by the authorities who don't want people talking about this.
Sara Ryan 30:29
Yeah, it was really interesting because George Julian and Dr. George Julian are sort of freelance knowledge transfer consultant, and now journalist. We where following each other on Twitter. I didn't know her at all. But she got in touch early on as well. And she's absolutely brilliant at mobilizing people, basically. Sobetween us, we was all like, backwards and forwards. And she came up with a hash tag #justiceforLB . And then we just started sort of, we didn't have any real plans, we didn't have any rules. And we didn't have any structure. But we just started, we both decided that we wanted to be remain positive, and be transparent about everything. And also we needed to raise money. So we started... because a lot of people were were really effected when Connor died because they were following the blog. And they felt like they know that they knew this funny, funny young man, it was terrible. So people started stepping up and doing all sorts of different things to raise money, selling postcards, cake sales two villages in Yorkshire got together. There were so many different things that happened that were absolutely brilliant. And it it was because there was no rules because there was nothing. There wasn't this big men caps to charity organization, people did either tiny things or really big things, whatever they could do. And it was unstoppable. Because the more people did, the more people looked and sort of thought I can do this, or I'm going to do that. Or I'm going to make my brownie group in New Zealand think about Connor on Thursday evening. And it seemed like that just grew based on joy, love, color, creativity, there was so many creative outputs. And the more that grew, the more the lawyers and the representatives wanted to sort of like put a stop on it. this really sort of ridiculous set of backwards and forwards because you have these meetings before an inquest pre inquest reviews, like 2 hour meetings with the most ludicrous suggestions from the trust and they were sort of obsessed with. We're gonna have a jury because the jury would know they'd be following my blog. They'll be on social media and it's ridiculous. argue. But in actual fact, it was almost like the collectivity the generosity of spirit of people who had no idea that people like Connor were treated in such a terrible way just sort of blew away the ridiculous hierarchical bullying structures of the state. And it was Yeah, it was actually remarkable. We ended up I mean, in the book I document some of them and if you google 107 days of action you can see all these days that people adopted to to mark Connors life and do something. There was lectures, a quilt was made. Beautiful quilt, with patches sent from all over the world. Oh God, there was so much stuff. A flag was taken around Glastonbury and got on the BBC News. Three buses, three double decker buses in Northhampton were named after Connor, which was one of his dreams and a heavy haulage truck near Swindon Earth line. They put Connors name on a truck. It was just extraordinary things that people did. And it was great. We ended up walking the Camino in Spain with a cardboard cutout bus that somebody had made months earlier, those boxes, and we just tramped along that track a lot of few when people just came and joined us and people walked in England as well that just popped up on WhatsApp and walking in in Regent's Park or walking in Cornwall. What was really moving about that was really moving to just walk because you know, trail is so spiritually soothing.
Katherine May 33:57
Yeah, it's really emotional experience. Yeah,
Sara Ryan 34:00
it's just wonderful. But we would meet Spanish people and they would ask what happened and we had somebody spoke Spanish and their faces when they heard they just could not comprehend what we were saying. That would never happened in Spain, because their sense of family and culture and how you can people is so different. And that was really quite sort of shocking to see that, that people really didn't understand and then we got invited to like receptions at the town halls along the way.
Katherine May 34:31
Spanish I love that about the Spanish because they love children, you know, like, they don't have this kind of cynicism towards children that we have in this country. They just are allowed to love their children. Children are out and about, but what all of this did, is it really humanized Connor i think you know, that we so often hear about these tragedies and the person at the center of them becomes a kind of player Face almost but but you did all of this activism that re humanized him. And I loved the tiny gesture at the proceedings as well of like changing his photo regularly on display to remind people to refresh the jury's memory that this is a person.
Sara Ryan 35:16
Yeah, I mean, I think what happens quite often and one of the, there's so many different bits of this that are just shocking. But if somebody dies on a gap year in, say, I don't know, Peru, and they have a terrible sort of accident where they sort of fall off a mountainside doesn't mean, they're on the front of the bbc news website within hours of it happened here. And they can only just told the family and it's already news from a nanosecond. And Connor didn't actually despite what happened in being so horrific. He didn't actually get into the national newspaper for about nine or 10 months. So that was really shocking, because like, he's not, it's not really, I mean, loads of people don't get the news when something terrible happens. And it's always really sort of offensively organized. But yeah, it brings it on, but then I think, for some reason, when it's somebody with learning disabilities, or autistic, that's there's a tendency or some to show the pitch just before the die or showing them in some really harrowing situation where you just your persona, almost pathologizing and erasing nice humanity, like often hooked up to a ventilator. That's the picture you see over and over again. Exactly. And it's, it's like, that's so salacious. It's so sort of emotive, it's so unnecessary. And the thing with Connor, and that was, you know, it's in the book, The funny moments, he was just a very funny, man. And that's what propelled the campaign was him at the center. But then this, George, Julian's brilliance, the sort of the way in which we could draw because of the way Twitter works, and you're in touch with so many different people, so we needed a flyer to sort of for fundraising, and within minutes, you know, we get a flyer from somebody and then you've got the legal expertise. You've got the South Africa expertise, you've got the carers, you've got legal, you know, all sorts of academics. We had sort of like an army of skills.
Katherine May 37:02
Yeah, yeah.
Katherine May 37:03
We'll be back with more from Sara Ryan in a moment. But first, I want to tell you about my online course wintering for writers, which is back online after a successful first run last summer. wintering for writers is designed to be a beautiful reflective process for writers who are currently struggling, as so many are in this pandemic year. If you're feeling blocked or losing hope, it's packed with videos and thought provoking texts to help you to rethink your practice. And there's an exclusive workbook to support your reflection. Best of all, you can work at your own pace, and in complete privacy as you write yourself back into your creative flow. To find out more, go to Katherine may.com, and click on courses or follow the link in the show notes. And now, back to Sara Ryan. The verdict when it came was damning.
Sara Ryan 37:03
Which is great.
Sara Ryan 38:03
Yeah, it was I mean, bloody are the the two things and throwings to get to. It's called a determination the things you learn as well. There's an article to inquest, which should happen automatically when someone dies at the hands of the state, but it doesn't actually happen automatically. You have to fight for it. So in those meetings leading up to a cause inquest, the first one that the the southern health, barrister turned up and sort of said, Well, we don't need an article two because that's when death isn't by natural causes. And then drownings a natural way to die. I mean, even the coroner at that point sort of said drowning isn't never a natural cause of death. throw that out. But when you sit in a room sort of three feet from somebody saying that about your child, I mean, your thoughts are quite murders. But then so you're across the course of two weeks of the inquest. We have to hear outlandish stuff, a totally outlandish ways of trying to wriggle out being responsible for cause death when you could not be more responsible.
Katherine May 39:01
More mother blaming to
Sara Ryan 39:03
Oh, there's more mother but I mean, you you give evidence it's really distressing because they on day one, you have to even the person who did the post mortem and the balls that up to which was terrible, but anyway, I left the court at that point because I couldn't even open you get sent the report by never opened. So I'm in the family room. And then Tom came rushing out in tears because he was going to sit through that post mortem and then realized quite soon into it, he probably didn't want to hear it either. And then you get told so we're in the family room, just crying basically. And then then you get the court officer who was grateful comes in I'm really sorry sir. But you need to go and give your first bit of evidence or you sort of like each walk through into a courtroom stand in a dock you know, stand in that box. get shoved a piece of paper that you have to read out when you've just been literally sobbing about the the inner workings of your son's body when he died. You have to read out this statement, which everybody read it out. And then everybody proceeded to lie basically. Then a few days I'd like to do at that point was basically say what have happened. But then at the end, because there was a great big argument that the trust wanted me to give my evidence at the beginning, so they could slowly unpick it. And then I had to go first for some particular reason around what had happened. So in the end of the enormous arguments, the coroner agreed that I did the first bit on day one, then get my proper evidence later, at the end, got that giving the evidence the second time and the bar, you face these barristers and they're just, it's just I've just remember holding onto the front of that box and just feeling like just crushing my knuckles on the box just to sort of do not pass up. Don't cry, just do it. Oh, so?
Katherine May 40:48
Yeah, yeah. Hold it together. Actually. I mean, you're you know, you're an academic, you've been through by far, like you've, you've maybe got more experience in this kind of thing than most people. But imagine the pressure that some people must feel who are not used to speaking in public or defending their ideas. I mean, if it does that to you, yeah. And you were told that this system is not supposed to be adversarial.
Sara Ryan 41:14
Some of the barristers have to say it was six, seven barristers for the different members of staff and the trust and some of them were actually obviously really decent people and they just went for the minimum, but the responsible clinician, or madam hating doctor, crack shy and stuff for the jump, do errands or set up any sorts of things to me like, Well, Dr. Ryan, you work full time, didn't you say you couldn't look off shops.
Katherine May 41:42
Really just set that to me? It's such a toxic mix of complete.
Sara Ryan 41:49
Then the second barista stood up and he said to me, I just want to ask you and I'm he sort of apologized. But did you ever tell any of the staff that they had to look after Connor in the bath was, Oh, god, this is just so awful. And it sort of sets up when they start saying too much. It's like, Well, when I took my kids to drop them off at school to go on school trips, I didn't tell the staff not to let them run on the motorway. It was just obvious basic that of healthcare that even primary school kids know that people with epilepsy shouldn't even have to bother. It was awful. But then after that, the other barristers just declined to ask any questions, which in there was always even in the worst times, there was always these little moments. That's a bit of decency. Thank
Katherine May 42:37
you. Yeah. Yeah. And and it seems that the jury, we're not fooled by any of it anyway.
Sara Ryan 42:46
Now we bumped in a determination was was the worst they could find they were allowed to find which has contributed to by neglect. And I bumped into a few of them after, which is quite hard. You see them in town sometimes. And it's quite interesting, what they've they sort of were very much on board and that juries tend to be I think there was a court I followed last week and in question, members of the public are very, very straightforward, and they can see wrong and they ask questions off from the barristers, ask questions, they they have the opportunity to ask questions of whatever witness and you can tell by the questions they were asking that they got it, you know, it was very clear, and not to say Paul bone and Caitlin and Charlotte with as representatives, they were absolutely brilliant. But it is, it is hugely unfair, because we have a lot of resources to draw on, we were able to raise the money we needed, we got a pro bono help. And we had, you know, of top legal team and most people, I think a lot of people are just adore shots early on. And if they managed to get through each bit, then they are crushed by those barristers because they are they really do go from the junkyard?
Katherine May 43:51
Yeah. Well, I mean, it's actually interesting. You're talking about, you know, the troll, you're tweeting last week, which I was following you do, because actually, you are now such a powerful voice, you know, you haven't let go of this just because your son's case is sorted. You are now somebody who advocates for many, many other families now, and you seem to follow these things really, really closely. I'd love to know how you cope with that. It must be such I mean, there's obviously there's still a lot of anger and a lot of kind of Righteous Fury driving what you do. But how do you cope with your kind of continued advocacy? How do you keep going
Sara Ryan 44:34
here? That's a really good question, actually. Because my research was always in this area anyway. Yeah. So I saw what the evidence is around people with learning disabilities, autistic people, and when kind of died and the trust instantly steady died of natural causes. We weren't really alarmed by this because we knew of the evidence of the premature deaths of people with learning disabilities. And I tweeted, David Nicholson, who was chief executive NHS England at the time sort of had a bit of a Twitter rant like I do tweet, rent and meters. And we went to see a man rich, and we'd come up with this manifesto the night before, because rich very sensibly said, we can't just go and vomit. You know, got half an hour that would it be legitimate actually know that he knows what's happened. And we need to make it count. So we, we came up with a list of things we wanted to achieve. And one of them was we wanted an investigation into the depth and the trust of people learning disabilities, because we thought, if they're going to say, kind of tied to natural causes, what else is going on? So it was a very long story. That's all in my book. But anyway, the report eventually found that he commissioned David Nixon said, Yeah, I'll do that, which is great. found that there was 327 unexpected deaths and people learning disabilities in that trust across a five year period. And there were two investigations, one of which was color. And the other one, a young man called Edward Hartley. And I, George Julian was our family representative on that, that report as the process of the report, and she texts me on the bus and told me those figures before the report was written. And I remember being on the bus and just crying. I didn't even care that I was just sitting in public. I remember that because I was just like, just that just cried, because I just felt so upset for the treatment of certain people in this country and that rage and that it like you said, it's righteous anger is never gonna leave me because it never changes. And I just feel on economies like this as well, he felt so so he had such a strong sense of injustice and justice.
Katherine May 46:29
Yeah.
Sara Ryan 46:31
He has, got that from me. And I just sort of feel like, it's not about it was never about Connor, really, that the campaign was never about Connor. It was about every person with a learning disability who is treated abominably in this country. And that is actually following the inquest last week, for example, actually, I feel it is a physical pain, and I just feel like I can't walk away from that.
Katherine May 46:53
Yeah, you're like, you're one of the few people who is able to look, actually because it is it's hard. It's so hard to watch. It's, you know, it's really hard to witness but actually, the act of bearing witness is does extraordinary work. I think
Sara Ryan 47:09
it is because George Julian, she live tweets, these inquests, and she supports families. She does a remarkable job. She's all crowd sources of sort of basic income. And she does this and she does it very well. She tweets what's being said, whereas I go in and just tweet what I think basically does tweet a bit of what's said and then tweets some commentary, which is a bit easier than what she does. But I must admit one inquest last week, I had worked meetings in between, and there was a sort of three hour period when I could have gone into inquest, I knew George was live tweeting, and I was just like, Oh, thank God for that. Because it's just so painful, but it does need witnessing. And I say to George, and I talk about this quite a lot, because she writes blog posts, I write blog posts. And every so often, one of us will say to the other ah, not sure, I really should write a blog post about this boy, I just not sure I can go there, you know, not another post. But then it's so important to have it documented there, even if it's not acted on now, at some point, somebody is going to pull all this together, and hold it up to the light in a way that, you know, something has to happen.
Katherine May 48:13
Something I've found myself repeating a lot this year is activism is a relay not a marathon. like I've heard people say activism is a marathon, not a sprint. But actually, I think the people who survive and really make change, pass the baton between them and others. And that means that you can sometimes step away when you need to.
Sara Ryan 48:34
Yeah, I think that's, that's really true. And I think that it is great that there are some really cool figures who were all on the same sort of page. And there is that sense of, oh, they're they're doing that and all the rest of it, because it is exhausting. But I did go to a doughty street talk, they do some lovely sessions, and they have been on legacy. And I didn't realize at the beginning that I was going to give a five minute talk at the end. And I was so full of rage about the lack of change, but they were talking, I can't remember if it was people from Liberty or whatever were talking about legacy taking 10... you know, you only start seeing change after 10 years, and I was thinking, Oh, I'm gonna revise my expectations here been a bit impatient, obviously. A longer game ahead.
Katherine May 49:12
With some justification, I mean, I you know, without wishing to close on it on a kind of down note, but I, I am always left feeling like I don't personally know what to do to help. And like also, with a sense that there is no charity that it feels safe to turn to for support for this stuff in the UK. And I think, you know, in the US probably too, because so many of our charities that are supposed to support autistic kids and then disabled kids have let them down very badly have a record... you know, and there's no trust amongst the community to turn to those people for support. So it's left to individuals, are you under that same pressure, who do we trust and what do we do? There are two huge questions sorry.
Sara Ryan 49:59
They are huge questions. And there are things that just puzzle me over and over again. And I know they puzzle a lot of people. And I think a that the two charities in this area national autistic society, Mencap did start off with really strong values at the beginning, they were started by families, you know, there really were set up to do some good stuff. And I think they probably did do good stuff early on, and they've completely lost their way. And I can't even begin to talk about either of them, because I just find them monstrous, in what they do.
Katherine May 50:26
Because they've both been implicated in residential care abuse. Basically
Sara Ryan 50:30
Yeah, they are the, they're terrible. They're so reputation focused, they don't give a shit about the people they're supposed to serve. So I agree with you about who to turn to. And then I think there's also a bit of a habit. And I've written about this in my second book of reinventing the wheel. Because when we were young, a group of friends of mine, we will have kids at the same school, we didn't realize that people have come before us, we were so naïve, we're gonna change things, everything's gonna be fine for our kids. Because here we are look. And you new sort of like, So then a new set of parents come along, and they don't realize the work that's going on before. So I think that passing on stuff is really important. And so there's things pop up every now and again, I do my heart sinks are God Why don't go to those meetings, don't bother with the old party party parliamentary group stuff, it's all a load of shit. Like this really miserable old cow quite often just like don't do it. George and I have been talking about this recently. And I'm sort of getting to a point where I think we don't need organization we don't need a minister we don't need this. We don't need that. We need to sort of like almost behind the scenes stuff that's just getting done. We don't need you know, I'm have no interest whatsoever as me as a person being involved in this. It's nothing to do with me. , I want this stuff to change. I want people to be able to look forward to their children's futures and I want the children to be excited about their future. And I can only see that really happening with a sort of almost a network. I think Chris Hatton that Manchester met talked about this sort of sort of ninja network almost actually do it you know, and just don't they're not in it's not a public thing. I think that's that's the sort of see working at the moment because there's too much self promotion there's too much self interest in anything that that gets anywhere people get co opted and schmooze silenced which really and that's one thing that I don't think I ever would have been I don't think Georgia would be so
Katherine May 52:27
I'd like to see someone try
Sara Ryan 52:33
Eventually we just roll over like pussycats "oh stroke my stomache I've been waiting a long time for this". But no, that's quite funny. So I suppose we just keep keep on keepin on and try not to get too depressed about the lack of change. One thing I really hold on to to end on a more of a positive note was Ciara Lawrence being interviewed by Jon Snow on radio on Channel Four news the other week, learning disability issues are making the news now, you know, this is a group who is no longer invisible. I think to have self advocates on national news is is such a breakthrough and such a sort of strong sign that there is some sort of change happening
Katherine May 53:14
It's coming. Yeah, it's just slow. Well, Sara Ryan, thank you so much for talking to me. It's been emotional. I'm sorry to make you tell the story again, in lots of ways, but I think that I am more inspired every time I hear it. And I just appreciate everything you do.
Sara Ryan 53:36
Thank you.
Katherine May 53:38
Thank you.
Katherine May 53:47
And that's all for us today. Thank you so much to Sara Ryan for taking us through her incredible story. Justice for laughing boys available in all good bookstores. And you can follow Sara on Twitter as @sarasiobhan. I'll be back next week with another brilliant writer who is intimate with winter. Thanks for listening.
Show Notes
This week Katherine chats to Sara Ryan, author of 'Justice For Laughing Boy'.
After Sara Ryan's autistic son, Connor, was sectioned and admitted to a residental mental health unit, there seemed to way to get him out again. And then, one morning, he died after having an epileptic seizure in the bath. Convinced that negligence was to blame, Sara began a campaign that not only brought the local authority to justice, but also put Connor's humanity at the front and centre. Sara talks about righteous anger, the urgent need for change in our care system, and how friends and family can help you to endure.
Sara Ryan is a senior researcher and autism specialist at Oxford University's Nuffield department of primary health sciences. Her learning disabled son, Connor Sparrowhawk, died in a residential unit, aged 18
We talk about:
Death of a child
The crisis in residential care
Accessing meaningful support for an autistic child
Social media campaigning and coping with a legal enquiry into her son's death
Links from this episode:
To keep up to date with The Wintering Sessions, follow Katherine on Twitter, Instagram and Substack
For information on Katherine’s online writing courses, including her programme Wintering for Writers, visit True Stories Writing School
Wintering is out now in the UK, and the US.
