Woman's Hour - Homelessness, Touch, Caring

Episode Date: June 10, 2020

Fear of becoming homeless is one of the factors that stops women leaving an abusive relationship. That’s according to the charity Women’s Aid which carried out research before covid, and collected evidence of women sofa-surfing, staying with friends or having difficulty getting a place in a refuge if they did leave. But now we're in lockdown have things got better or worse? In our latest Corona Diary we speak to ex-pat, Carol. She lives in Australia but was planning to move her whole family back to the UK. She wants to be closer to her elderly parents, but the complications of coronavirus have put a spanner in the works. Lockdown may be lifting at different rates around the UK, but for some people it still may be a long time before they see others from different households and what's more. touch them. Henrietta Harrison speaks to three women about missing touch, and how they're getting around it. Penny Wincer has written about caring. In her new book called Tender, she combines her own experiences as a carer with the experiences of others. She offers hints, guidance and support.

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BBC Sounds. Music, radio, podcasts. Hello, Jenny Murray welcoming you to the Woman's Hour podcast for Wednesday 10th June. Good morning. We're all likely at some point to face the prospect of caring for someone we love. A parent, a child, a partner or maybe a sibling. Why does Penny Wincer, who's cared for her mother and her son who has autism, call her book Tender, the imperfect art of caring? Each time I see my son at a safe distance, I long to give him a hug, but daren't. How are we all coping without that important part of our lives? Touch. And the next

in our series of women's our corona diaries. Carol is in Australia with her husband and children but is desperate to come home to her elderly parents. How will she manage it? Now we've known for a long time that it can be terribly difficult for a woman suffering domestic violence to find a place in a refuge where she and her children might feel safe. It's often been asked why women who are in danger in their homes don't just leave. But the charity Women's Aid has found the fear of becoming homeless is one of the reasons why women don't walk away from an abusive relationship. The research was carried out before lockdown began and there was evidence of women sofa surfing, staying with friends or having

difficulty finding a place in a refuge if they did escape the violence. Well what's the position now we're still in the midst of the crisis? I'm joined by Abbey Blake and by Lucy Hadley who's Women's Aid's Policy and Campaigns Manager. Lucy how severe was the fear of homelessness that you found in your research? Thank you and yeah we are launching two reports today which show us very clearly I think that that fears of homelessness are a massive barrier to women leaving an abuser and that unsafe housing will often be the price that they actually pay for for taking that step and leaving and one woman told us that if you leave an abuser it is to be safer if you're leaving for a life different but equally unsafe you might as well stay and that unfortunately is the terrible

choice that that survivors are often forced um to make they told us about really significant upheaval and moves um that they had to make often after many years of leaving unsafe and unsuitable housing which could put them and their children at further risk as you said huge barriers to to accessing a safe refuge space now as i said that the research was done before the lockdown began. What's been the impact of lockdown on that fear? We know that the concerns have only really intensified over the past couple of months. So women contacting our direct services and our member services delivering refuges and other support across the country

are telling us that abuse is escalating, but it's harder to leave due to the restrictions on all of our lives during the pandemic. We know that refuges are really concerned about the numbers of women who are going to need to escape to safety as lockdown begins to lift, and that in the context of an ongoing housing crisis, shortage of affordable housing and welfare forms that make it incredibly difficult for women to be able

to access a suitable home, that the level of demand just simply won't be manageable. And I think for the really specific concern and a really acute concern is women that have no recourse to public funds due to their immigration status. So that means they're actually barred from accessing any financial and housing support at all. And that has been a massive issue during lockdown. Women with no recourse to public funds facing systemic barriers to accessing a refuge space or another form of safe accommodation. And we're really, really concerned about that. Now, your survey is small 136 women how sure are you that it represents a wider picture?

Well 136 women responded to our survey to give us really in-depth insight into their housing experiences and and the price they paid for leaving an abusive relationship but I think this survey builds on a very extensive body of existing research and evidence on this issue. So we know crisis, for example, found that 60% of homeless women had experienced domestic abuse and St Mungo's found half of their female clients had experienced domestic abuse as well. So we know that domestic abuse is really by its nature a housing issue. And for women and children experiencing domestic abuse light on the housing journeys and experiences of survivors, which we've long known through other existing research.

Abi, how close were you to becoming homeless when you were suffering in an abusive relationship? Very close to becoming homeless. At one point, after my ex had left me, I was terrified, absolutely terrified that I would have to either lose the children or lose my youngest. And he would go into care and I would have to go on the streets. I actually wasn't aware at the time that there was accommodation or safe houses until after I've been attacked and even then the thought of going into a refuge or any safe house accommodation just terrified me because again there's a waiting list there there there's there's quite a lot of communal refuges now that

are closing down or at the time were closing down as well. And so I was on the brink of going out on the streets. What happened to bring you to that point of leaving the house, which after all was yours? Well, it was a double edged sword. I'd wanted to leave all the time, but at the same time it was my house, so, you know, it would have been expected that he should have gone, although he didn't. And so the violence escalated and escalated to the point where I was very seriously, fatally injured. And then having to come back from that, I lost my career, lost my job and simply just could not afford the

outgoings to support my children and the house and just the basic needs of every day. I have been unemployed now for three years and at the time again it just terrified me that I had absolutely no means and no financial support to be able to care for myself and the children and the utilities. So I literally just thought that the only place I can go is the street. How are you managing now? Basically, I went to Citizens Advice, my local Citizens Advice group, and they sat down with me. I couldn't look at any of the bills I was suffering from extreme PTSD because of course the

finances impacted my mental health and and the thought of going out on the streets and they assessed everything for me and they they put me in touch with the council and their various utility contacts and I had to explain my situation. They also wrote on behalf of me so I managed to get a lot of reductions, particularly my council tax. They organised food banks for me, they arranged that I had milk and food vouchers and vegetable vouchers for the children so my outgoings were reduced dramatically and then my various local domestic abuse support helplines and groups also offered services and clothing and toiletries and so that also helped reduce my outgoings and every little

bit counts and counted. Now clearly the question of refuges is a really difficult one and on Monday the question of refuges was discussed in Parliament. The Shadow Home Secretary Nick Thomas-Simmons asked Priti Patel, the Home Secretary, about funding for refuges. Thank you Mr Speaker. The honourable gentleman is absolutely right about the money that is required to go to frontline services which is why and he did ask of the 76 million pounds the amount of Yr wythnos diwethaf, mae'r wladolwr yn hollol iawn am y arian sy'n cael ei ddefnyddio i fynd i'r gwasanaethau ffwrdd, ac mae'n gofyn am y 76 miliwn o arian sydd wedi cael ei gael i ddysgu'r cymorth cymorth cymorth. Fel rwyf wedi'i ddweud, mae'n rhannu dros tri adran. Mae'r Gweinidog Cymru wedi cael £15 miliwn am y gwaith gyda charitiaid cymorth cymorth lleol trwy'r system cyd-ddyddol. Ond roedd ei gwestiwn benodol yn ymwneud â'r angen ar gyfer ymdrinion.

Bydd y cyllid yn ymwneud â'r amgylchedd ac yn amlwg, a bydd y Gweinidog Lleol a'r cymunedau yn gweithredu £10 miliwn i gwasanaethau cymdeithasol lleol yn sicr. Mae'n bwysig i ni i gyd ddeall, ac mae hynny yw'r man ar gyfer. Yn ystod y cyfnod anodd hwnnw, mae'r amgylchedd wedi'i chael yn anodd i gweithredu. That is where the demand is. Throughout this very difficult period, Mr Speaker, where refuges have found it difficult to operate, there have been a widespread of measures that we as government, in our engagement with them, directly with the Commissioner as well for Domestic Abuse and the Victims Commissioner, have deliberately sought to find practical means and support for the front lines, specifically to support them throughout this emergency. Lucy, given what the Home Secretary had to say, how worried are you now about places in refuges? We remain really concerned about the future sustainability of refuges.

As Abi said, women continue to face significant barriers in accessing the safety and support they need. And that's because our national network of refuges is still unable to meet demand. So we're 30% below the recommended level of bed spaces in England. And on top of that, COVID-19 has really presented a perfect storm of challenges. So refuges have found it harder to accept new referrals, still lack of clarity over PPE for refuge staff, and they've lost income and experienced staff shortages at the same time. Now the Domestic Abuse Bill is progressing through Parliament at the moment. How much are these issues of homelessness, shelter and refuge likely to be addressed as part of the Bill?

It's really welcome that the Bill will include a new statutory duty on councils to fund support in refuge services. That's really important, but we need the government to commit to the long-term funding that needs to underpin that, and we estimate that's around £173 million per year. But also, we need changes to ensure that every woman escaping to Escapades can access a refuge space and safe housing in practice. So that must include ensuring that all survivors, regardless of their immigration status, can access the public funds they need to escape domestic abuse. That's really important and we're calling for that urgently in the bill as it progresses. Lucy Hadley, Abbey Blake, thank you both very much indeed for joining us this morning.

And if you have experience similar to Ab Abby's, do let us know. We'd really like to hear from you and find out how you're coping. Now, so many of us have found in the past week since COVID-19 took control of our lives that so much of what we had planned has had to be put on hold. It might be a wedding, a family holiday, a new job, the purchase of a new house. For Carol, who's the next of the Woman's Hour Corona diarists, it's a plan she spent a year carefully putting together to enable her and her family to leave Melbourne in Australia

and come home to the UK to be nearer to her elderly parents. She's still in Melbourne, which is from where she joins us carol good morning good morning jenny and now after living in australia for 23 years with an australian husband and teenage children why come home now well um my husband is aust, as you say, I'm British. During that 23 years, we have actually spent six years back in the UK. And although life in Australia is wonderful, and I've got an absolutely wonderful set of in-laws, the family I married into is fantastic. We have a lovely life and a lovely home. But home is also where your family is. I'm very close to my family. As I say, we have lived in the UK since my husband and I have been married. And our plan was always to come back. But when the children were younger teenagers, that was very hard.

And so it was always part of the plan. It was just that the timing was, we hope, now. So what plans had you actually put in place? Because 18-year-old son, 16-year-old daughter, it's still a big move for them. It's a big move for them, yes. But part of the reason we're doing this now is they were both very much on board. I don't think it would have been possible with a reluctant 18-year-old and 16-year-old. So what we put in place, this is really the only window of opportunity we have. My son has finished school and has just finished a qualification to become a

personal trainer. My daughter would be starting A-levels in the UK this September and she has a place to do so. So part of what we did in the planning was last November we came over or she actually came over on her own at 15 and looked around at schools and she now has an offer from a school of a place to start A-levels in September. My son because we lived in England for six years and he did the first three years of his schooling in the UK, he has some great friends over there, including one friend that he met when he was three and he's carried on that friendship. So he's actually very happy to come back and pick up with his friends over there. So the timing was really just perfect and we'd been planning quite a bit

particularly around my daughter's school and then came the virus so how much of a real hold has that put on those plans well look i really really hope we will still get there. In practical terms, there are several things. One is that we had to apply to come into the UK. Now, from what I can see from the government's websites, we no longer have to apply to enter the UK. We do have to apply to leave Australia because we are all Australian citizens as well. And we have to apply to leave the country because the borders are closed. Of course, we'll have to do quarantine when we get there. We're planning on doing that with my sister, who's kindly said we can go and do that with her. But she works for the NHS. We heard just literally today, I've heard she checked with her employer. Having us in quarantine

is not going to stop her going to work which was our big concern because obviously we couldn't have done that so we really really still hope we can get there there are flights we've just got to get the permission from the Australian government to leave and and and just actually get on the plane and get there now your parents are in North London. How much has the pandemic intensified your longing to be closer to them? Very much so, I think. Look, I've always been very close to them and I've been lucky enough to come home at least once a year and we talk on the phone a lot.

But I think when you know that you might not be able to do something, it makes you want it more, of course. And the reality is that really getting there by September is the crucial thing. Because for my daughter, if she doesn't start A-levels on time, you know, to start those six months late or a year late would put her at a disadvantage. And if we can't get there by September, we'd have to commit to finishing her schooling here. So it really has intensified down into this very short space of time between now and September. How concerned are the children about their prospects in a world after COVID-19? I don't think they're necessarily too concerned.

I think they've got that confidence of youth. I think they've got the optimism of youth. They're just, they're really looking forward to the move assuming we can get there and I don't honestly think they've thought that far ahead and that's not that's nothing against them I think that's just normal teenage thinking I they don't seem to be overly I mean they're looking forward to it to it being over but I don't think they're worried about the long term. And what about your parents? What are they saying to you about this? Because I know your dad is in his 90s, isn't he?

Yes, he's in his 90s. My mum is in her 80s. My mum just says, oh, darling, I can't wait for you to come home. And my dad is very pragmatic. He's saying, look, you know, if you can't get here, you can't get here. But ever since we moved back to Australia 12 years ago, I know that I've always said to them, it's not permanent. I am coming home. And we originally hoped that would be after five or six or seven years. It's been 12.

And I think, look, he's very pragmatic but I think he would like to see us home as well. And you want to see them don't you? Yes yes I do very much so I know it will be at two meters and it won't be a hug like like you and your son at least not for the time being but it would be lovely to see them how close do you reckon you are to having to decide what to do whether to give up the plans or really pursue them um that's a gosh that's a difficult question in my mind we are not going to drop them unless somebody, i.e. the government, the Australian government, says we can't leave. I think we've got a very good case for leaving because we're not saying we want to go on holiday and come back. The government here is more worried about people coming back than leaving, per se.

So I think we've got a good chance. And in my mind, unless somebody absolutely tells me it is impossible then we're coming carol the very best of luck to you and your family and your mum and dad up in north london i do hope it works out for you thank you very much for being with us this morning and of course we would love to hear from more of you about how the virus has affected your life and your plans and looks as though it might continue to influence everything we do. Do get in touch by email or, of course, by Twitter. Now, still to come in today's programme, Tender, the imperfect art of caring. Penny Winter's book draws on her own experience of being a carer for her mother and her son who has autism.

And the serial, the third episode of The Seventh Test. Now, yesterday, you may have missed Rosamund Pike discussing her role as Marie Curie in the film Radioactive. And on Monday, we talked about delays in fertility treatment caused by the coronavirus. If you miss the live programme, all you have to do is catch up by downloading the BBC Sounds app, search for Woman's Hour, and there we will be. Now lockdown may be lifting

at different rates around the UK for some people, but with social distancing set to go on for maybe many more weeks or months, it may be a long time before people from different households can touch each months. It may be a long time before people from different households can touch each other. It is becoming almost unbearable to have to see your children or grandchildren, young or not so young, at a distance and not being able to hug or cuddle them. Henrietta Harrison

spoke to three women about how much they are missing physical contact. First, we hear from Jamie Klinger, who has not touched her partner since the crisis began. I've been with my partner, Jonathan, for eight years, and I last saw him on March 14th. So we're at nine and a half weeks. My boyfriend's a full-time carer for his parents. His dad has dementia and his mom has Huntington's. So we are very conscious of their vulnerabilities. And because he's their carer, any access with anyone else just puts them in more risk. I think when you're with someone for a long time, there's just the natural way that you touch someone and you're around them. It's the laying on them while they're playing Clash of Clans and you're reading.

And also we have a dog, McNulty, that we share. And she's got no recognition of personal space. So she's always half lounged on one of us or both of us at the same time. And so I just think your comfort level of just leaning on people and being a snuggler or being someone that you're constantly tacit with. Just you get really used to it and the absence of it has been very difficult during lockdown. So tell me about the journey that you're making later today.

We're going to both go along the canal and then meet near Park Royal, which is kind of like it's 90 minutes for each of us to walk. And then there's some greenery. So I've got a picnic so we can still stay socially distanced, but we can actually finally see each other for the first time in over nine weeks. And so we can both walk along the canal in opposite directions and meet, which is exciting. I'm freaking out. I'm really excited. Can you just give me a sense of how you're feeling about seeing him and about the walk? Honestly, I just want to read while he plays his game and just be around each other,

which sounds really stupid, but it's us being able to have a normal picnic, even though I can't touch him and we can't hug and I can't lie on him. But at least we can be around each other and joke and tell each other stupid things that are in a book. Or we're at least going to be outside. It's going to be a beautiful day. It's going to be four hours of walking, but it doesn't matter. But seeing him again, it's just going to be really fun. Like I cannot wait to video him being reunited with my dog. Like all of my followers and stuff on Twitter are like, oh my God, it's Johnny day. I might've been talking about it a lot, but yeah, I'm, I'm really looking forward to

seeing him. I know I'll cry. I'm Jill O'Neill and I'm a vicar in South London. Touch is a part of my job in different ways, really. There are formal elements of touch in my job, in blessing people, in baptising, in the sign of the peace we share in an ordinary Sunday morning service. There are also informal kinds of touch and that's anything from a small gesture, a gentle touch on someone's arm or even a big bear hug. Inform informal kinds of touch that you might not even notice at the time. I think I've always known that touch is quite important and that even the smallest gesture can be quite powerful, but I don't think I thought about it very much. And now that we can't touch and can't be physically proximate in the same way I am noticing the absence of it but I think what I'm doing is trying to help as best as I can to demonstrate and convey connection and warmth and kindness.

My name is Susie Bevan and I'm 77 at the moment and I've got four grandchildren ranging in age from 10 down to three. Prior to lockdown I saw the children that live in the village most days we'd pass in the street or you know i'd help meet them from school or they'd come up for a cup of tea saw them a lot the ones in leicester probably saw them at least once a week sometimes a bit more often. So yes, we're close as a family, both geographically and seeing quite a lot of each other. Obviously, you're very much part of their lives, especially the ones in the village. How has it been in lockdown? Just describe how you've managed to see them, but what you're missing, I missing I suppose well we knew lockdown was coming and in fact it was the day after Iris's birthday that we actually got close for the last time on the 17th of March and they came up with some birthday cake and they fixed me up with zoom and facetime

and we all had a big hug and we knew it was probably going to be the last one for ages sorry and I was tearful and I wanted to howl which has seemed to be just the same now And the hugs are such a part of life with us. I can't hug my daughters, and I think we, both daughters, we find it a great support. It kind of communicates things you don't actually say. It shows that you care, and it shows that you've understood them. With the children, it's all sorts of different senses of touch, isn't it? I mean, if I meet the local ones in the village street, they'll suddenly treat Grandma and come running up.

I have to brace myself because they charge into me. Like if they come and have a meal or have tea and they're going home there's always a little hug and a kiss when they go iris is perhaps not quite so keen on the hugging and kissing and she's inclined to just sort of nestle into me and i put my cheek on her head and we smile at each other but it's all very tactile and the ones in Leicester are just the same you know little hand come and look at this grandma or if we go for a walk crossing the road and those little hands are so special there just seems to be a kind of ache a sort of hunger. We chat and we laugh and we really communicate but there's that missing thing right at the end somehow of the saying goodbye and the hug.

This is a really stressful time for everybody and at times like this it's quite natural to instinctively want to reach out to be with people use appropriate touch for example next week I'm taking a funeral normally I would go and visit the family in their home we would have a long time talking about what's happened about the person who's died and their life. That's not possible at the moment. And so we're having to use phone calls and emails to do that instead. And then at the funeral service itself, we'll have to practice social distancing, even if they are really upset and needing a hug. So tell me, what was it like meeting him?

It's such a weird thing to see the person you love and not be able to hug them and not be able to hold their hand and not just be able to cuddle with them. I didn't cry until I left. And my friends were like, did you really not hug him? And I was like, we didn't touch each other. Who's that guy? It's my doggie.

It's my doggie. Oh, it's my doggie. Look who's here to see you. He's a alien. It's my doggie. Look who's here. It's my doggie. Go get him.

I told you. Oh. It's my doggie. Oh, my doggie. But I'm glad I did it. Like, my God. Oh, my God. But I'm glad I did it. Like, I'm glad we're being safe. I'm glad we're learning from this experience. And although it's painful right now, I feel like it's made our relationship better and stronger, which I never thought would happen.

Like, I would think I would be like, oh my God, I just miss everybody. I'll just blah. But it actually has really reinforced what I need from him and what I feel about him and how much I can't wait to get back into a routine where we can wake up together and chill and rough the house and hang out. Now we FaceTime.

We FaceTime a lot. And in in fact I FaceTime Iris and Wilf each of them separately every day because their mum and dad are trying to work. We have wonderful conversations. Can you hear me? Yeah. Yeah. How was Joe Wicks this morning? Good. Good right and you're ready for some poetry? Yeah. Well we work on poetry which is something I'm quite an expert on and talk about books and read things together. I wandered lonely as a cloud that floats on high. It's really good and really close until it's time to say goodbye. And then you can't have the hug. In fact, just this morning, I was talking to Iris

and Wilf came in and wanted to hug Iris. And I said, what's the matter, Wilf? He says, oh, I've been out on the trampoline and I was by myself and I wanted some company. And so we had a little chat about hugs and we all agreed how important they were so we did a virtual hug around the iPad but I can't say virtual hugs are really quite a substitute for the real thing. What comes

next in your day you two? We've got our snack and then we're going for our walk. OK, well, come here, both of you, and let's do a virtual hug. Bye bye, shall we? Bye. Bye. And that report was by Henrietta Harrison. And how are you coping with social distancing? Let us know.

I think it probably happens to all of us at some time in our lives. Someone we love needs to be cared for. It may be a partner, a sibling, a friend, a parent or a child, and quite often it might be a combination. Frequently we find, as was the case of Carol in Australia, there are elderly parents and teenage children

who need our attention. Well, Penny Windsor has cared for her mother and now cares for her daughter and for her son who has autism. She's the author of Tender, the Imperfect Art of Caring. Penny, why the imperfect art of caring? Hello, Jenny. i think the imperfect was important to me because um i didn't want anyone to think that this book is about getting it right um there's no one way to get caring right um but there's a lot of conversations we can have around caring i think and why do you call it an art i think because it's exactly that there's no uh there's no one way of doing it and I think um for me having two different experiences of caring I learned so much from supporting my

mother when I was a teenager and I was able to take so much of that with me into parenthood and when it became clear that my son was disabled and he was going to need a lot from me I could draw on some of those experiences that I had from my mother. Some of them were, you know, incredibly different. They were very different situations. But I think we can learn a lot from different caring situations. How difficult was caring for your mother when you were a teenager? I think the difficulty was I didn't know that's what I was doing. Like so many young carers, I'd never heard the term young carer before. I think I heard it for the first time when I was around 30,

which was eight years after she died. And then suddenly I twigged, oh, that's exactly what I was doing. It was really challenging. I think one of the most challenging things was that I didn't have the words to describe what was happening in our house. So I didn't really know who I could talk about it with and also who I could go to for help as well. What was happening in your house? My mother had severe depression. She had a breakdown and she started drinking and she had been very well when I was young and it started when I was about 11. By the time I was 13 she was often in bed for weeks at a time. She was in and out of psychiatric

hospitals and so part of it was looking after myself and helping to run the household when she couldn't do it but also it was very much taking care of her. By the time I was about 14 she had a number of suicide attempts and so it was also checking to see that she was safe. I was checking on her morning and night when I came home from school. And also just, you know, doing things like encouraging her to eat and look after herself as well. Now, one of the things you say in the book is that you're keen to reclaim the word carer. What do you mean by reclaiming it? Well, what was so interesting when I started writing the book, I was approaching a number of different people to interview them.

And so many people came back to me and went, oh, but I'm not a carer, am I? And a lot of people are really uncomfortable with the word. And that was really interesting to me. So I really wanted to look at that. I think like so much unpaid work, caring is really low status. And so it's not really a word that we necessarily like to associate ourselves with. But I think more than that, it's also, it reflects how we feel about disability in society. I think disability is still very much looked at as just about the worst thing that can happen to you.

And it's also very hidden in society. And so I think it can be really difficult to use the word carer for that reason. But also I think in some ways the word carer also feels unidirectional as if one interviewer said to me, it makes it feel like my child is a victim and I'm the rescuer.

So I think the word can be really problematic for that reason. But I think the word can be really problematic for that reason but I think you know if we think differently about disability if we look at it as a kind of quite natural normal part of life it's it's a very common experience disability and caring for someone who is disabled is also quite a common experience that perhaps you know we shouldn't disparage the word so much. You said that having cared for your mother rather prepared you for caring for your son and yet there must have been very different needs that they both had.

Really different needs but I think what's interesting one of the things that sparked off me writing the book was having a conversation with a really close old friend whose mother has Alzheimer's and you know she was diagnosed about 14 years ago now, and they're at quite late stages. And sitting down, the two of us having a conversation, we realised actually there was lots that we had in common as carers, even though looking after a parent with Alzheimer's and looking after a child who's autistic,

on the surface you would think would be completely different. But actually there are lots of things we have in common. I think, you know, one of the things is dealing with the really difficult emotions that come up. There's a lot of guilt and shame in some of the emotions that come up when you're caring for somebody that you really love and you really want to support but often you don't feel like you're doing a very good job or you're doing it well enough and that can be the case in whatever relationship and whatever situation. Obviously, you have a daughter who is not disabled. How have you managed to give her the attention she needs when her brother must need so much? It has been a challenge.

It was particularly challenging when they were really small. I think in some ways, my son now goes to a specialist school. And in some ways, that's really small. I think in some ways my son now goes to a specialist school. And in some ways that's really helped. You know, I really earmarked certain days for my daughter and certain days for my son. Their needs are very different. And what they like to do is very different. So I think probably more than anyone I know, I spend a lot of time with each individual child more than a lot of my friends do. But also, I think, you know, when we're inside our house, although my son's needs are very high, and he needs me to be around quite a lot,

my daughter learned very young that, you know, we could chat. She learned to speak very, very young and learned that, you know, I might be physically quite taken up with my son, but her and I could have a conversation the whole time. And so, we spent a lot of time chatting even even if my son is taking up quite a lot of my attention how important has it been to look after yourself I think it's so important and I think that's probably one of the greatest things I learned from looking after my mum was that when you're supporting somebody else, you really have to take care of yourself as well. I think, you know, so many of us are in this for the long term. This is going to be, you know, hopefully many, many, many decades. And so I have to really think about

the long term. I think especially, you know, as a mother, you know, society is constantly telling us to put everybody else first. And I think we have to fight back against that quite a lot. I think if we keep our needs front and centre, we can be the best we can to care for the people that we're supporting. How did you manage that as a teenager? Well, it was really, really challenging at first. I didn't have any boundaries at all. And also nobody really knew exactly what was happening in our house.

Eventually, when I was 15, after my mother had a really bad year with a number of suicide attempts, I did end up going to boarding school. And, of course, I was very fortunate that my parents were in a position to do that. And in that sense, that made a huge difference because I created boundaries around the caring and I was still caring for her from a distance I was on the phone to her quite a lot but and I was spending weekends and holidays supporting her as well but I think the difference was at that point I was able to control when I spoke to her for instance if I knew I had an exam that morning I would do the exam first and then I would call her because often if she was very upset with me, then it would be really difficult for me to concentrate.

So I think that was a huge thing that I did for myself. And I did that, you know, I was very lucky I had the support of my extended family to do that as well. What are the most important things you're hoping people will learn from your book? Well, firstly, I really hope we can change the way we look at disability. I think a lot of suffering that happens with carers is this idea that it shouldn't be this way, that our child shouldn't be disabled or our partner shouldn't have become disabled. You know, those are quite natural feelings, but I think we also need to really understand disability and rethink how we look at it.

And also, you know, the other thing is that I really, really hope that people are kind to themselves. I know it sounds a bit glib when you say it like that, but I think, you know, I at first as a carer to a disabled child would really criticise myself a lot for not getting it right, for making mistakes that would mean that my son ended up in a big meltdown. But really, you know, criticising myself into being a good carer doesn't work. But what does work is having a bit of compassion for myself,

knowing in those moments that anyone would find this moment quite difficult. And if I can have compassion for myself, then I can have more compassion for my son as well. And briefly, Penny, how has lockdown affected the help and support you're able to get for your son? It's been very, very challenging. We did have two weeks of self-isolation at first because there was a case of the virus on my son's school bus.

And then we had the Easter holidays. So he was at home for just over a month. That was incredibly challenging. And I spoke to my son's team and everyone agreed that he really should be back in school. We are really, really lucky. His school have been fantastic support. That's not the case for many disabled children in the country who have not had that kind of support, but I have lost 15 hours a week of, um, of carer, paid carers as well. So it has been really challenging.

And obviously now I'm squeezing all of my work into the short time he's at school while also homeschooling my other daughter and, um, and doing all the things that I can't do when my son's around, like I can't take him into shops or anything like that, especially not right now, right now. So, so yeah, it take him into shops or anything like that, especially not right now. So, yeah, it's been very challenging and long term it's not sustainable. But I know that, you know, for many other carers out there, they are doing 24-7 at the moment with no support. So we are doing better than many other people are doing.

But, yeah, the picture is not looking good for carers at the moment. Penny, Penny Wintzer, thank you very much indeed for joining us this morning. I was talking to Penny Winsor. We had lots from you on the question of distance and missing touch. Patty said in an email, there have been many comments about grandparents longing to have hugs with their grandchildren. My four grandchildren are in Australia, like so many thousands of grandparents, and I'm lucky to have a hug with them every couple of years.

Please think of us also. Maria, in an email, said, After my mother died of COVID-19, I didn't touch anyone for two weeks whilst in isolation. I couldn't hug my wife, and even at the sparse funeral, I couldn't hug my wife and even at the sparse funeral I couldn't hug my brother or sister. It feels cruel and inhumane at the time those of us grieving are needing physical comfort most. Sue in an email said I'm a nurse and recently gave a patient her injection. She said I was the first person to touch her in eight weeks.

The value of human touch is enormous. Jane said in an email, I've currently not seen my adult son for 12 weeks. He lives 100 miles away, and we don't feel we can meet up halfway and not hug. Maybe this will change soon, I hope. My mother-in-law's funeral was on April the 7th. We were there online, which in hindsight was the best option as we couldn't hug. We're desperate to be together again, but no touching. And then Colleen in an email said,

I was missing my children and grandchildren so much I made a hugging curtain with holes for our arms and I've hugged them all now safely. It was so restorative. And then on caring we had a tweet from Action for Carers. They said, thank you for covering this during Carers Week. It's wonderful to hear such a candid, honest and open description of the emotional challenges carers face. Now do join me tomorrow if you can. Three minutes past ten. I'll be here. I hope you will be too.

Bye bye. I'm Sarah Treleaven and for over a year I've been working on one of the most complex stories I've ever covered. There was somebody out there who was faking pregnancies. I started, like, warning everybody. Every doula that I know. It was fake. No pregnancy. And the deeper I dig, the more questions I unearth.

How long has she been doing this? What does she have to gain from this? From CBC and the BBC World Service, The Con, Caitlin's Baby. It's a long story. Settle in. Available now.