"100 miles from home, no one could visit meâ€
Nikki Fox talks to mental health patients sent 'out of area'.
Being in a mental health crisis is an already distressing experience, yet for hundreds of patients the situation is made worse when sent away from home for treatment due to a lack of beds. Experts call it an "inhumane" practice which was meant to stop in 2021, so why is it still happening?
American singer, Lizzo, made headlines around the world when an ableist slur featured on her latest track, Grrrls. Nikki Fox and Emma Tracey get to grips with what that really means and the impact such insults have had over the years.
And actor Arthur Hughes, whose credits include Then Barbara Met Alan and The Archers, talks about becoming the first disabled actor to play the ultimate (disabled!) villain, Richard III, for the Royal Shakespeare Company.
Produced by Beth Rose, Keiligh Baker and Alix Pickles
Recorded and mixed by Dave O'Neill
The editors were Damon Rose and Jonathan Aspinwall
Transcription
Presented by Nikki Fox and Emma Tracey
EMMA- Just a quick note before we start: this podcast episode has a short section on people who have had suicidal thoughts, and our section about Lizzo contains some fairly strong language.
EMMA- A little bird tells me you’re on your holidays soon.Â
NIKKI- Yes, I am so excited, Emma. I feel very lucky and I am very excited. I am going with my family and my boyfriend to Portugal.Â
EMMA- Oh wow. And are holidays a big pain or have you got stuff in place? Have you done lots of preparation and boring stuff like that?Â
NIKKI- Well, I think many people know, I’m just thinking physically disabled people here, finding a villa or a hotel that’s accessible takes a fair bit of research. So, we didn’t really decide on what country we wanted to go to; we decided on what country had the best accessible villa. And we found something in Portugal. It’s like super-duper, it’s got everything, we’ve got pool hoists, the whole shebang. It’s even got a hot tub. And I just cannot wait, Em, because I’m actually a really good swimmer. I mean, I say a really good swimmer, if you saw me swimming you’d think I was drowning. In fact once I swum in a local swimming centre and the lifeguard jumped in because he thought I was drowning.Â
EMMA- Oh no!
NIKKI- But I was actually just swimming. Because it looks a little bit odd, but I am actually quite a strong swimmer. I know what’s going to happen at the end of the holiday, I’m going to get feeling really sorry for myself that I’m not swimming every day because it really does make me feel so much stronger. And often as not I can work better.Â
EMMA- Why is that?
NIKKI- Swimming is definitely the best form of exercise for muscular dystrophy, which is what I’ve got.
EMMA- And that’s going to improve your physical ability?Â
NIKKI- It will. I do do a little bit of walking, which I’ve told you before. I mean, I say walking; it’s like a shuffle and I have to cling on to Livy for dear life and it looks awful. But at the end of the two weeks I’ll get back and I’ll be able to shuffle a lot better.Â
MUSIC- Theme tune.Â
NIKKI- This is Access All, the 91Èȱ¬â€™s disability and mental health podcast. I’m Nikki Fox and I am in London.Â
EMMA- And I’m Emma Tracey and I’m in Edinburgh.Â
NIKKI- Now, it’s been called inhumane and dangerous, and I’m talking about the practice of sending people with severe mental health difficulties hundreds of miles away for treatment because there aren’t any local beds available. The government’s pledged to eliminate this practice by 2021, but now more than a year on the Royal College of Psychiatrists have been looking at the scale of the problem. Emma, can you tell me, what have they found?
EMMA- Yeah, so let’s start off by explaining, depending on who you ask, 600 or 700 people are out of area at any one time. The Royal College of Psychiatrists says that people have spent 206,000 days out of area in the year since the deadline for stopping the practice, and it cost £102 million, the same sort of cost as 900 psychiatrists wages.Â
NIKKI- You see I know about this kind of practice but in the perspective of people with autism being inappropriately placed in these inpatient units, but this is different. An inappropriate placement when it comes to acute mental health is a placement that is you’re sent just miles and miles and miles away from home.Â
EMMA- Just because there isn’t a bed.Â
NIKKI- Because there isn’t a bed, okay. So, now we know the financial costs let’s find out what the personal cost is for the actual human sent so far away from home while in mental health crisis. I’m joined by the lovely Simon. Hello Simon.Â
SIMON- How are you?Â
NIKKI- Oh, I’m all right. Thank you so much for joining us, Emma and I really appreciate it. Thank you for talking to so openly about a subject that is not the easiest. But this has happened to you. It says here you had a 25-year history of depression. In 2011 you needed inpatient treatment for your mental health. What was going on with you at the time?
SIMON- I was in the midst of a depressive episode, which for me involves a really flattening out of my mood. I’ve been unable to concentrate, not sleeping, not eating. But really more than anything struggling with thoughts that people close to me would be better off if I wasn’t around. And it culminated in an attempt at suicide.Â
NIKKI- Were you sectioned?Â
SIMON- I wasn’t sectioned, but the impression that I was left with was either way I’m going into hospital, so I consented. So, they then went away and came back and said, right we’ve found you a bed, it’s in Harrogate.Â
NIKKI- And how far was Harrogate from where you were?
SIMON- I looked afterwards, it’s actually about 90, 95 miles away from home.Â
NIKKI- What did that mean at the time? This crisis I presume you want to be close to everyone you love?
SIMON- At that immediate time it didn’t matter. I didn’t care where I was. I didn’t want to be alive. For my wife, for my family it was devastating that I was taken away, that I was sent so far away. At the time I’d got a six-month old baby, so sort of travelling two hours each way with a tot wasn’t viable, so it was really difficult for them. I was away for 14 weeks.Â
NIKKI- Wow, 14 weeks.Â
SIMON- Over the time as you start to recover then lack of visits, lack of contact becomes more and more problematic.Â
NIKKI- It’s the connection, isn’t it?Â
SIMON- Yeah.Â
NIKKI- Stay with me Simon, because we’ve got a clip from Ria. Ria was detained under the mental health act in 2018 and she was given a bed far from home. Let’s have a listen to her story.Â
RIA- I am agoraphobic and I’ve pretty much not left my house for all of that year. And it was August, that day that I got detained I just got to the end of my capacity to cope with that and I left the house intending to kill myself. And instead of killing myself I got detained by the police, off the streets, in the clothes I was wearing, that’s all I had with me. I don’t know why we couldn’t even stop by my flat. I was taken up to this other hospital in a car, and we couldn’t just go to my flat so I could get some clean pants. And we travelled in the car for lots of hours, and I ended up in this hospital miles away. I was there for about three and a half weeks. So, no one could visit me, no one could bring me clean clothes. I used to wash my clothes in the shower in the morning and go and stand outside wearing my wet clothes and just dry them in the sun.Â
SIMON- My experience is much further away in time. It’s heart-breaking that we’re having the same conversations. I’d been travelling from the general hospital down to the inpatient unit in Derby. We drove past my house. I was then taken to Harrogate in an ambulance and we drove past my house again, and I still went without shoes.Â
NIKKI- Ah.Â
SIMON- It sends a message that you’re not worth anything. It’s wrong, and I can’t believe that we’re still having these same conversation from sort of early 2010s through to 2018, missed targets in 2021. It feels as though nothing is changing. And it’s not right. It wouldn’t be acceptable in physical healthcare. Can you imagine putting somebody living with cancer through this? How and why? I don’t get it.Â
NIKKI- You were at your lowest point, rock bottom; what would you have done if you hadn’t gone to one of these settings? Let’s forget about the distance; let’s think about the place itself.Â
SIMON- So, I potentially would have died. I did need to be in hospital. It was exactly the right place for me at that point and it kept me safe. And now three years later I’m as well as I’m going to be.Â
NIKKI- Yeah. It’s probably a good time now to bring in Marjorie Wallace, chief exec of mental health charity, SANE. Hello Marjorie. Now, Marjorie I’m just interested there, chatting to Simon about the need for these types of places, what is the answer? I know I’m coming in with the biggest question, but what is the answer to this?Â
MARJORIE- Well, I’m so sad. The stories, I’m nearly in tears. But actually we hear these stories all the time. Now, what is the answer, you’re saying what might be the answer, shall I just say the reason that this is happening. The reason is that the all governments have had a relentless agenda to actually close down psychiatric beds, on the grounds partially of costs and partially because it looks good because everybody can be looked after in the community. And in many statements say however disturbed, however ill when they get to rock bottom, like Simon, it’s still that they can be looked after in the community. And that’s partly because on the back of an envelope cost they would say that the cost of one person in a psychiatric bed with staff and qualified people with them they can treat 44 people, or rather not treat 44 people, in the community. And over the last sort of 30, 40 years we’ve lost two-thirds of psychiatric beds. And actually since 2000 we’ve lost half of the remaining psychiatric beds. Now, that leaves about 18,000 beds in the whole country for anyone with psychiatric problems or who need to have care. And that is the reason it’s happened, and they’re not doing anything to address it. In the ten-year plan that’s being proposed and we’re being consulted on there is no mention of reopening the closed units.
NIKKI- So, if I’m being quite basic about it, the government is saying that actually it’s early intervention, it’s community support, it’s all of that, close these places down, much like they say for people who are inappropriately placed with autism, they want to close these kinds of places down. But what you’re saying is there is still a need for people like Simon and Ria to have access to these places so they can be supported close to home. It’s a mixture of the two, is that the ideal situation?Â
MARJORIE- Absolutely. What we at SANE have been saying is that every trust should have at least five, six beds available so that if somebody is in crisis or they turn up at A&E and they’ve self-harmed or they’re feeling suicidal or they’ve attempted suicide there should be a safe place for them to go in their own area. And there is no place of safety. Sometimes it has been a police cell; that’s slightly reduced now. But otherwise people are driven these hundreds of miles, they’re shunted like parcels around the country just where there is an available bed.Â
NIKKI- And what do you hear from the families that you support?Â
MARJORIE- The impact on families is awful. We’ve been working with a family, they have a young girl who has severe anxiety and depression, she’s self-harmed and attempted suicide and there were no places. This was actually in Cornwall, there was no bed available in the whole of Cornwall. And so she was taken to six different places, from Wales to the North of England to the South of England, six different places, just moved around. And the family actually drove 25,000 miles trying to visit her. And again and again we hear of the impact on the families. They may have other children. They’re not given any grant to go and visit, so it costs them a great deal if they drive, they can’t necessarily drive all those miles. And for them, I mean one mother just said to us it's every morning it’s absolute heartbreak knowing that my son is in despair and I can’t visit him. So, these stories show there’s impact on families as well as on the patient. And in a way this actually makes their condition worse in the end because by disoriented as you’ve heard, having no contact, feeling sorry, you’re already frightened and feeling alone and feeling rejected. The worst thing to do is to take someone into an unfamiliar place where they don’t even know the nurses, the doctors or anyone around them. I mean, that’s going to delay their recovery.Â
NIKKI- Yeah.
SIMON- As you move towards discharge it makes it much harder as well I think to join up inpatient and follow-on care. I’m sure that I was in hospital for longer out of area than I would have been at home.Â
NIKKI- We have a statement here from the Department of Health and Social Care. The statement reads, ‘Everyone should have access to safe appropriate mental health care, and we recognise the impact that receiving care far away from loved ones could have. That’s why we are investing an extra £2.3 billion per year to transform NHS mental health services by 2024’. That does sound like a lot of money, doesn’t it, Marjorie? Is that enough?Â
MARJORIE- Well, it’s a question of what the money is going to and will it reach people like Simon and Ria, will it go to the frontline for people who need help. And the evidence is that it isn’t going to the frontline.Â
NIKKI- This has been a fascinating chat. I would say if you’re worried about your own mental health or anything we’ve spoken about today then you can visit 91Èȱ¬ Action Line website.Â
MARJORIE- May I just add that you can ring our helpline. They can go to the website, they can leave their number and a suitable time to call and someone will call them back within 24 hours and then we can have sustained contact with people who have no one else.Â
EMMA- And that website address is sane.org.uk.
NIKKI- Thank you so much Marjorie. Thank you so much Simon, you explain so beautifully that situation that’s one of the darkest times for you. And I can’t thank you enough for coming on. And thank you Ria, for sending us that message as well. So, we can’t not talk about Lizzo Emma.Â
EMMA- No.Â
NIKKI- [Sings] I toss my hair, check my nails, baby what you doing, feelin’ as good as hell. But it wasn’t that song that caused controversy.Â
EMMA- No. I do have it. it is stuck in my head, I just keep going [sings] da, da, da, girls.Â
NIKKI- Grrrls, that’s it. Now, controversy was language that Lizzo used, and she used an ableist slur. I don’t get this whole ableism thing. You’re going to have to teach me one day. As a disabled person it means nothing to me. I’m just going to call it a rubbish word, an awful shitty word that we should really not be using right now.Â
EMMA- A word that’s hurt people who are disabled in the past.Â
NIKKI- For many years, yes.
EMMA- For many years.Â
NIKKI- Yes, yes. It’s really bad, outdated and we’ve sort of been toying with the idea of whether or not we should even, but I think we need to say it Emma, she used the word spaz.
EMMA- Yeah.
NIKKI- Which is obviously short for spastic, which is a horrible word that I hope that I’ll never hear anybody use again in my lifetime, but it was used in the track. Now, we have to say that when she was called out on this she did listen and change it pretty much immediately, didn’t she, changed all the versions as well.Â
EMMA- Yeah, really quickly she changed absolutely everything. There’s a universal love of Lizzo, and a lot of the calling out by disabled people for using that word was, I really love you and I don’t love this word and it would be great if you could just not have it in the song. And that’s exactly what she did: she listened and she went and took it out of the song. It’s not in the song on any of the streaming services. People generally won’t hear that word in the song anymore and that’s really all she can do, right?Â
NIKKI- Yeah. I think a lot of disabled people at the time were shocked that it had come from Lizzo because she’s all about embracing you and your body and all of these kinds of things. She’s brilliant, you know, she’s always been a bit of a symbol of inclusion and all of that.Â
EMMA- Yeah.
NIKKI- I think a lot of disabled people were a bit shocked and hurt.
EMMA- Yeah.
NIKKI- But like you say she changed it. She obviously didn’t get the significance of that word and the fact that it’s a hurtful word for so many people.Â
EMMA- People were shocked that she didn’t get it, but there’s always talk that it’s used quite differently in America. I think we’re surprised when people don’t know stuff about disability, but actually not a lot of people do. I hear people say that word in this country, in this time, even though I’d have thought that we’d had this conversation a million and a half times and everyone would know that it’s not an appropriate word. So, I sort of feel like because she’s fixed it and because she’s genuinely said that it was unintentional I think her realm, her community, the people she speaks to maybe it’s felt differently about. There was a black American disability commentator, she was saying that Lizzo was called out differently than a white person would and that there’s lots of white men’s songs with those sorts of words that have just been left in and not such a big thing has been made of it. So, there’s all that to navigate as well. We have to say fair play. And all the disability commentators on my social media and who I follow have all said, that’s how to do it, that’s how to fix something like that. Yes, I’m a little surprised that you did it in the first place and that it got through all the producers and all the promoters etc, etc, etc, but that was the response that now you’ve set the bar, that’s what people can do.Â
NIKKI- Yeah exactly.Â
EMMA- And also I think when we talk about this we can never assume how words are used in different communities and how reclaimed words are or how words are used within different places. I think the thing about the N word that’s a difficult one; I’m not going to get into that.Â
NIKKI- No.Â
EMMA- But what I would ask is were you ever called spaz growing up?Â
NIKKI- I was probably called a few things in primary school. But I was just a bit delusional. I literally used to go round school with my headphones on listening to the Beatles’ Sergeant Pepper and just letting things wash over me. I don’t take it for granted that I’m just somebody that filters out rubbish and forgets about it. That’s my nature, and I’m blessed, I get that, because I understand very much so how hurtful that word is for so many people. And it hugely upsets me. And it’s like the R word, I loathe it with a passion, like the S word and that, because I think people with learning disabilities as well have such a tough time with it as it is and often have problems advocating for themselves or not necessarily have support around, and I’m like come on. But I think it’s a lack, I said education at the start, but it’s more, I don’t mean that in a snobby education way, I mean it’s a lack of understanding, of knowledge. I think with disability we are moving forward quite well in this country. Okay yeah, it would have been great for us 20, 30 years ago, but it is happening now. I can feel it happening. And I think potentially, not to lump an entire country, but I just think potentially in the US when it comes to disability there are certain areas, and language potentially being one of them, where there’s just not that understanding.Â
I tell you what confused me, because me and my sister didn’t grow up around anyone else who had a disability, any other disabled people, it was just me and my sis, mainstream education, the whole thing, and obviously bad language is bad language, but then what confused me was when I started getting into TV and I started meeting more and more disabled people with different disabilities, different impairments, I started hearing like say Liz Carr, who I adore, use the word crip to describe herself. And I get it now obviously, she can say whatever she likes about herself.Â
MUSIC- Access All with Nikki Fox.Â
NIKKI- Now, we’re getting a big highbrow this week, Em. How is your knowledge of Shakespeare?Â
EMMA- Not great. I did Romeo and Juliet and Hamlet at school and I’ve watched some of the CBeebies versions of Shakespeare plays. That’s about it.Â
NIKKI- Very good. And I once played Juliet, but I just got cast because my boyfriend was Romeo. And I do remember, Romeo, Romeo, wherefore art thou Romeo, deny thy father or refuse thy name, or if that will not be… Yeah, anyway.Â
EMMA- Beautiful.Â
NIKKI- Thanks, lovely. Well, the Royal Shakespeare Company won’t be hiring me. But they have hired their first ever disabled actor playing the part of Richard III when it opens in Stratford-upon-Avon. A quick history lesson for you: King Richard is the one who allegedly locked his nephews in the Tower of London, never to be seen again. He lived more than 100 years before Shakespeare wrote his play. So, while the bard never actually met him he famously depicted Richard as having a hunchback as well as being an A-grade villain. Here’s an amazing fact: when Richard’s body was discovered underneath a car park in Leicester ten years ago they discovered he had scoliosis, which is a curvature of the spine. Now, Arthur Hughes who has starred in the Then Barbara met Alan, which we absolutely love, Help with Jodie Comer, and played Rory Donavon in the Archers will take on the role of Richard III next month. And he is here.Â
ARTHUR- Hello.
NIKKI- Now, I am no historian Arthur. Hello, how lovely to meet you.Â
ARTHUR- Hello, and you.Â
NIKKI- We’ve had a little chat before, haven’t we? I already feel like I know you very well. Now, I’m no historian and I feel like a bit of a philistine because I was dyslexic at school so Shakespeare was like I could barely read the basics, do you know what I mean.Â
ARTHUR- Right.Â
NIKKI- But from what I’ve read about Richard III he was a bit of a wrong ‘un wasn’t he?Â
ARTHUR- He was a bit of a wrong ‘un. Well, from what we know about him, most of what I think generally people know about him is the Shakespeare play.Â
NIKKI- Yeah.Â
ARTHUR- And how he’s portrayed in the Shakespeare play is just absolutely a murdering wrong ‘un, as you put it. He murders his way to the top until he’s king.Â
NIKKI- Is that how we got to the point in our careers now?Â
ARTHUR- Yeah! Well, you know, that’s the only way to do it isn’t it really?
EMMA- Disability glass ceiling, need something to conquer it.Â
ARTHUR- Just smash through and murder who you have to.Â
NIKKI- And how does it feel playing a character like that? Because it must be quite exciting for you as an actor?
ARTHUR- It’s so much fun to play a villain. He’s just a marvellous villain. His relationship with the audience is a big part of it, so how he will be speaking to the other characters and then turns to the audience and go, oh yeah but you know, you know what’s going to happen later. So, there’s like this real complicity with the audience of going oh god, isn’t he terrible, he’s going to do all these things. Playing that is great fun. But throughout the play, he’s an actor as well, to get to where he needs to get to he pretends to be all these different things and manipulates and tricks people. So, as an actor playing him it’s great. He’s so two-faced and so duplicitous that to play all that is a dream.Â
NIKKI- And for people that don’t know much about Richard III, like me before I met you, give us a little run down of him and his story.Â
ARTHUR- So, he’s brother to the king, King Edward. But what most people know about Richard is he’s one of the most famous disabled characters in the English language. That’s the real hangover that kind of infiltrates all of disabled representation and culture since Shakespeare’s time. He’s a damaged young man who has been brought up in an ableist world, also through a civil war which he fought in. And then by the time he’s kind of finished that war he’s left in this peaceful time, but actually this peaceful time is a world that doesn’t accept him. And he’s like, do you know what, I don’t want to conform to all these rules for a world that just doesn’t want to have me so do you know what, I’ll play by my own rules.
NIKKI- Oh that’s brilliant that.
ARTHUR- Yeah, and he does. He makes his way to the top, but when he’s there kind of finds, am I any good at this. Well, I’ll leave it on that cliff-hanger.Â
NIKKI- What disabilities did he have then? Scoliosis?
ARTHUR- A form of scoliosis, but yeah, it’s scoliosis. In Shakespeare’s play there’s a list of things, describing like an arm like mine. My disability is radial dysplasia; I don’t have a thumb on my right arm, and missing one of my radius bones and my hand is slightly shorter. There’s stuff in the play which is similar to that. But there’s no evidence of this. What we know of him he lives in this legendary mythical status. And even in the play the way people talk about him is like, oh have you heard, he had teeth in his head when he was born, he’s got this and he’s got this. But actually when presented with the actual person people are like, oh. People make up rumour and myth about who he was, and that’s how he’s existed through history. No one actually knows, until they dug him up and they went, oh so now it’s that. Which I think it’s quite an interesting world to live in of like no one can get a real finger on who I actually am, which is I think quite useful.Â
NIKKI- I love it. Do you think the play, Arthur, has significance in the world that we live in today really?Â
ARTHUR- Absolutely. I think having a disabled actor playing Richard, I’m not the first but first at the RSC, it’s a big statement to have just a leading role at the RSC with a disabled actor on stage. Fantastic. But the play is about a leader, well a person who becomes leader, who’s just absolutely not up to it and is like a real tyrant. Look around the world today right now, how many tyrants? We’ve got tyrants everywhere. Well, we’ve got people who are leading who are completely unfit to do it and making terrible decisions. You go like, how did you get to be there? I think you could do this play five years ago, 20 years ago, 50, I think whenever it’s done it's always a real look at power and how people use power.Â
NIKKI- Talking about you as an actor, Arthur, where do you think we’re at now when it comes to disability and the arts industry, TV, media, film all of that?Â
ARTHUR- It’s kind of twofold. I’ve been acting about ten years now, and it feels a really exciting time to be a disabled actor. It feels like things are on the ascendance, fingers crossed, which is exciting. But not to take the foot off the pedal because there have been recent reports about, and we all know this I think as disabled actors and disabled people know that representation is like woefully under what it should be, and now it’s been reported that it actually is. So, there’s a lot of work to do. Things like incidental casting where people’s disability is just there.Â
NIKKI- That’s right, yeah.Â
ARTHUR- And it’s not the explicit reason for being there. You’re just there telling the story you’re telling. That has a real power that we should see. And we should see it in the spotlight, but without having to go…
NIKKI- Ta-da!
ARTHUR- …yeah, and be like, and here’s the reason why we’re doing it.Â
NIKKI- Yeah. I wonder what point we’ll get to when we can say, ah that’s it, true equality. I wonder what that will be. Will that be the first superhero using a wheelchair or will it be just anyone being cast for any role?Â
ARTHUR- Yeah, that’s it. I’d love to see, like with the Royal Shakespeare Company, it’s great that they’ve got a disabled Richard, but why not a disabled Macbeth?
NIKKI- Yeah. And where can people see you as well, what theatre?Â
ARTHUR- It’s going to be at the Royal Shakespeare Company in the Royal Shakespeare Theatre in Stratford-upon-Avon. And that’s June 23rd till October 6th I think are the rough dates.
NIKKI- Well, there’s plenty of time to catch the wonderful Arthur. The Royal Shakespeare Company also offers chilled or relaxed, signed, captioned and audio described performances. It’s been a pleasure, really honestly, and I hope I get to catch you as well.Â
EMMA- I’m loving the bit of Shakespeare. It’s always good to get a bit of culture.Â
NIKKI- A bit of culture. Did you like my attempts? Romeo, Romeo, wherefore art thou, Romeo.Â
EMMA- It’s a modern take.Â
NIKKI- Thanks darling. Well, please keep your emails coming in because we’re getting more and more and more and more, and it’s very exciting. Email us accessall@bbc.co.uk. You can WhatsApp us, send us a text or a voice note to our number which is 0330 123 9480. But crucially can you start your message with the word access. If you want to send a voice note just do the same thing too, just write access and then send the voice note. That would be fab. Well, I’ll see you in a couple of weeks everyone, so bye from me.Â
EMMA- Bye from me.Â
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Access All: Disability News and Mental Health
Weekly podcast about mental health, wellbeing and disabled people.