Transcript: 'Sex, with these hips?'
This is a transcript of 'Sex, with these hips?' as first broadcast on 17 April and presented by Emma Tracey and Simon Minty.
SIMON - Hello, this is the Ouch talk show. I'm Simon Minty, and standing in for Kate this month is Ouch journalist, Emma Tracey.
EMMA - I am honoured, and pretty nervous. This month we have sex tips from a hippie, whatever that is, and we have mental health strategies from a purple therapist. If you're confused about that too then our first guest, who's down the line from Derby, is Mel Halacre and she can help. Hi, Mel.
MEL - Hello.
EMMA - Mel is a therapist who works with disabled people on their mental health through a process she calls purple therapy. In a nutshell, what is purple therapy?
MEL - I specialise in disability, and what that means is that I have personal experience through my partner of disability and I have personal experience of being in various minority groups. But purple therapy really is about being aware of the social model, and unfortunately in current therapy training very little is covered on disability. On my four year course there was two hours on disability. So I've done a lot of extra training, and very much the model is about being disability affirmative, so also looking for ways that you can be resilient and the resources that you have already got and how disability can also provide opportunities for you to learn and grow.
SIMON - Mel is going to chat to us later about the impact that the low level drip, drip of discrimination can have on disabled people's mental health. Thankfully she'll be suggesting some coping strategies too. Remember, you can hear every new episode of BBC Ouch as soon as it goes live by subscribing on the BBC Sounds app, or listen to us on your smart speaker, simply by saying, "Play Ouch, disability talk from the BBC," which is what I did yesterday to test it out.
EMMA - And did it work?
SIMON - It took two goes, but it did work the second time.
EMMA - That's okay, that'll do.
SIMON - I heard you and Beth. That was a very good show.
EMMA - Oh thank you. That was with Martin O'Brien, the artist with cystic fibrosis, if anyone's interested in listening back. First, the hippie we mentioned at the start is Xandra Lee. And Xandra's new book, "Sex... with these hips?!"
SIMON - [gasps]
EMMA - Yeah... Is a guide to doing the deed for people with dodgy hips, by someone who's been through it. Xandra joins us in the studio.
XANDRA - Hello. Thank you for inviting me.
EMMA - Thank you for coming. Can you tell us what a hippie is?
XANDRA - A hippie. I kind of coined a phrase to be honest with you. Somebody who was born with and who lived with a hip dysplasia. So I was born with hip dysplasia and I've grown up and lived with it as an adult.
EMMA - What is hip dysplasia?
XANDRA - Hip dysplasia is a condition of the hips that you're either born with or it can develop as well. If we were going to talk about what it actually means physically, if you thought about the tread on a tyre that's not aligned properly so the tread would wear down, the same can apply if you think about in terms of hips. So the joints aren't aligned so it means that you are wearing down your hips essentially so they don't fit correctly.
SIMON - It's been a few years since I've talked about my total hip replacement. They stopped me talking after about four shows, but mine was like a flat bit, so the balls would just slide up and down all the time. Is that…?
XANDRA- Yes, the flat bit that you're referring to is what's known as an acetabulum, so that's the socket part of the hip. So my socket part of the hip was very shallow so they would move around, they would click, they would pop, they would jump about, and it was treated when I was a baby and I was told I would have healthy hips by 18 months and then in my teens it kind of started showing up in the form of instability and I was limping and I was slipping and falling. I wasn't very good at a lot of things to do with standing up.
SIMON - And pain?
XANDRA - Pain started. It crept in more so in my early 20s. The pain was horrendous.
EMMA - So a hippie is something to do with hips.
XANDRA - A hippie is somebody who lives with a hip condition. So you can be a hippie if you've got hip dysplasia, you can be a hippie if you've had a hip replacement. So Simon, you are a hippie as well.
SIMON - Thank you. So the book you've written, is that for medical professionals? Is it for fun? Tell us a bit more.
XANDRA - So it's a guide for dating. It's a guide for relationships. It's a guide for sex itself. And it's for those who are living with hip dysplasia who have gone through preservation surgeries where they break your pelvis and reset it so your socket is deeper.
EMMA - Ow!
XANDRA- Yeah, it was very painful. I've had two of those bad boys. So sex after that for instance is quite tricky, so it's for that as well. And hip replacements as well. My consultant who has known me for quite a long time now, so I met him when I was in my teens, I've known him for a good 20 years now, he was actually part of helping me in terms of this book, so he's written a little piece on the back of the book that just explains, you know, this is going to help everybody involved really in terms of consultants who, when you've got patients who are going to their consultant saying, "Actually, how do I do this and how am I about to?" it can be a bit of an awkward conversation.
SIMON - Or hopefully consultants might even just say, "Here's a book, which is always awkward for us to talk about, but here's something which might be useful."
XANDRA- Yeah, and somebody who's lived with it. Lived with it and lived through it and experienced it and found a way through.
EMMA - Because medical professionals, from my experience, aren't known for talking about sex in terms of disability and in terms of the kind of physical ailment that they're dealing at the time. And I guess it's probably a bit scary for them.
XANDRA- You can't blame them. Who's trained… when you're learning about hips or bones or a specific profession nobody goes, well actually we'll train you on the whole sex thing as well, just in case. You can understand really. I mean I've had some awful conversations with medical professionals about it and they'll go, "Just be careful. Just see how you get on." And it's not helpful. [laughs]
EMMA - So how do you approach them about it? What should someone do? What would your tip be for someone who has any sort of physical impairment that makes them not quite sure how that's all going to work?
XANDRA - In my experience, a very straightforward approach is the best way. I think part of the problem and the reason this book exists is because everyone's too scared to just talk about it. So I used the internet. The first thing I did was jump on Google.
SIMON - YouTube? [laughs]
XANDRA- Well yeah, let's have a good look and see how they do that then. Don't ask me to start doing YouTube videos, that's not going to happen. I did use search engines and I had a little look online about how I could do it, and you're talking about using aids, things that you can use around the house in terms of cushions. So there are things like sex aids, like specific chairs and specific cushions.
SIMON - Have you seen the swinging hammock one?
SIMON - I love the swinging hammock.
XANDRA- They are useful, but there are things that you can use around the house, and especially bean bags, bean bags are better because they're rigid and you're not going to get the push back, as you would on a cushion.
EMMA - We're talking about cushions and things you can use, but actually let's go back a little bit and ask what are the challenges?
XANDRA- The challenges aren't just physical, the challenges are from a psychological point of view and from a mental point of view as well. and when you start out they are physical. They are physical because you're experiencing pain, you're experiencing immobility. So in my teens I started noticing that I wasn't as mobile as everyone else was and it was only in my 20s that I really started to lose my quality of life. So when you get to that point and you've got to change how you do things those are the challenges that you're up against. You're thinking well I used to do it like this and I can't do it any more.
SIMON - Presumably people are asking you on dates and wanting to go out with you but that part, the physical side, would you defer that?
XANDRA- To begin with it was avoid. I mean I was very much in a state of denial about what I had going on. And also it wasn't easy to talk about, and I think it's taken me a long time. To be sitting here with you now and talking so openly about it wouldn't have happened 15 years ago, it used to reduce me to tears. I remember when I used to talk to himself as I refer to in the book, that's my other half, who's name is Paul, so when talking to Paul, very early on in our relationship, I would just break down into tears and I'd have to stop. So I would avoid the conversation because it was easier to just avoid the conversation as opposed to having to face it.
EMMA - And I wonder do people actually have less sex because they can't even get to the sex bit. I'd imagine, Mel, you have something to add to that?
MEL - I do talk a lot about sex. When it comes to health professionals I think it's really important that professionals actually invite the conversation in to try and break down that barrier, but unfortunately that doesn't happen a lot. Or often they'll say, "Oh it's not my department, it's someone else's department," and you kind of go round the houses. I am seeing that things are slowly improving but as the same with psychological therapists also sex therapists don't get a lot of training around disability. So for a while we had volunteer sex therapists answer questions and their main advice was, well go on top. [laughs]
XANDRA- Yeah, I wouldn't recommend that to anybody.
MEL - And I would be like well, that can't be your standard response to all difficult situations. And what about if you've got two disabled people trying to have sex? And so then I realised they need a lot more training and it's very patchy. So there are specific sex therapists who often have a disability themselves and they've gone on and have further training and have knowledge of different aids and equipment.
EMMA - And what about helping disabled people to talk to each other or talk to their partners about the anxieties they have around pain or about mobility when it comes to getting down to it?
MEL - I've worked with a lot of people who come to me when they're thinking about dating and we do a lot of work around how do you ask your PA for support with grooming, because that can be a big issue. I've had young ladies say, "I want to shave my legs but I feel too embarrassed to ask my PA to help me." Or, "I want to shave my lady bits," [laughs] things like that. So even small things can be a massive barrier and then the whole dating process. Where do I meet someone? When do I talk about my disability? Do I hide it? Do I not hide it?
I often help clients work through all of that process, and how do I deal with rejection, until they get to that point, and then I've worked with some people around masturbation. That is a difficult issue. I've done a lot of work where there's PAs involved, and again there's no real training or guidelines.
EMMA - Yeah, that's a really tough one, because I've been talking to people a lot about disability and sex because it's something I want to do more around, and masturbation comes up a lot as something that can be a precursor to actually building up the necessary tools and resilience I guess to go forward and have sex.
MEL - Yeah. For so many disabled people the touch they experience in their lives is very medical. Washing and dressing, and if people use a mobility aid like a wheelchair then often they don't get hugs and things like that as often. Part of that is getting to know your own body and getting to know that it's not just a bit that needs washing but it could give you pleasure as well and masturbation comes in there. So it is a very difficult area but we have identified certain sex aids that can make that process easier, like hands free vibrators, but if you need support in the tidying up then that's when it can kind of get tricky because other people need to get involved and you have to have meetings and discussions about what they're prepared to do and what they aren't.
EMMA - It's tricky. It's so much more than anyone should have to deal with isn't it?
MEL - Yeah, and there's no handbook around all of this and so you feel nervous about it yourself, you don't want to open up, and then you've got to have a team meeting about your sexual needs. [laughs]
EMMA - Oh my gosh!
SIMON - Xandra, I mean sex is not everything but it is sort of the cherry on the cake. I remember for me it was about being complete, part of being human and so on.
XANDRA- I'd agree with that.
SIMON - Your book is quite personal. Do you think that nervousness has affected other parts of your life?
XANDRA- I think it goes so much further. My immobility as time has gone on and how I've lost a lot of my quality of life or the life I had before, as all I thought about was what I'd lost and having people look at me differently or say, "What's wrong with you?" or, "Why are you limping?" it does impact my confidence and my self-esteem. You can then flip that round and say well yeah, that then affects your ability to go out and be confident enough to speak to somebody for the first time, or be accepting of people asking you out on a date. It works in a 360 situation. It can affect every element of your life. It certainly did mine anyway.
EMMA - Did it affect your mental health in a significant way?
XANDRA - From a self-esteem point of view, absolutely. So my body looks a lot different than how it used to look 15, 20 years ago. I mean I know it does for everybody anyway, everything eventually goes south. I've got quite a lot of scars. I've got quite a lot of muscle atrophy from the waist down, and I speak about in the book realising how different I look and how disheartening it was in terms of seeing myself change like that and thinking well who would want this?
EMMA - So muscle atrophy is wastage.
XANDRA - I lost my mobility quite quickly in terms of just walking and climbing stairs. I spent a lot of time resting and especially after the osteotomies which are the preservation surgeries where they break your pelvis.
EMMA - Yeah, you keep saying that…
SIMON - Yes. Stop. [laughs]
XANDRA - Yes, so I was bed bound for a little while and I did struggle to move about. So you lose muscle so quickly.
SIMON - What about the male aspect of this? And there's two questions I have, one which is himself, Paul, talks, and I thought that was a really interesting bit about how it was gradually revealed to him, but there was another extra bit which was… we had Jack Binstead recently on the show who has brittle bones or OI, and he said even during, having sex once, one of his bones broke but he overrode that and…
EMMA - He overrode that. He literally went on through the pain.
SIMON- He ignored the fact that he'd broken a bone and carried on. Are there male penis overriding any other sensible thing questions?
EMMA - Quote from Mel as well I think.
XANDRA - Just carried on. I've got to be honest, I have through pain carried on. I was always thinking about the person that I'm with. It's not good, because you're there supposed to be enjoying it together and you think I can't stop this now because we've only been seeing each other for so long and now it's going to ruin everything.
SIMON - There's a beautiful line in the book where himself, Paul, says, "I didn't know whether it was pleasure or pain. I didn't know what to do with it."
XANDRA - It's true. So I'd be getting frustrated going, "What are you doing? Why are you stopping?" And he's going, "Oh, okay," and it ruins the momentum if you let it do that. So you have to get to a very relaxed place in your relationship as quickly as you possibly can. It's a very difficult thing to say when you first start seeing somebody but it's about being vulnerable. It's about breaking down that barrier and that's a really difficult thing to do. It's all about fear at the end of the day.
SIMON - There's not a lot of male voices in the book. Why were they hesitant do you think?
XANDRA - There were a few reasons for that. Hip dysplasia is mainly something that affects women. I've also found that men aren't very open when it comes to wanting to discuss anything intimate, anything sex related.
EMMA - So they really, really want to do it, Simon, but they don't want to talk about it.
XANDRA - They don't want to have that discussion.
EMMA - Because you did a survey didn't you for your book, Xandra?
XANDRA - I did, yeah.
EMMA - And it was all women who filled it out wasn't it?
XANDRA- So of the 104 people that took part in the survey there was only a very small percentage that were actually men. And I did put them shout outs on groups that have got 5,000 people in, and it's not just hip dysplasia but the hip replacement side of things, it does affect men as well though. If there is anybody who would like to contribute towards from the male aspect then that would be very, very helpful.
EMMA - As luck would have it, and he has mentioned it already, and he does mention it quite regularly, Simon is a hippie. So maybe you can help with some of the nitty-gritty questions.
SIMON - I am more than happy to. When I read the book, this is awful for me to summarise it, but it was very much around confidence and having those conversations. And the bit which is lucky for me, I do like humour and I use humour, and when I've been in those situations many moons ago where our physical elements may make this very difficult, to laugh about it rather than get distressed about it was the solution for me.
XANDRA - Absolutely.
SIMON - And it's no one's fault, it is the way it is and there are other things you can do. And to make it funny and sort of just daft and ironic just felt better to me.
XANDRA- That is the best way that you can deal with it. And the laughter aspect of it has been a huge, huge part for me. Being able to just stop and just laugh about things is probably the best way you can deal with it. I've had displacements, so before I had my hip replacements my hip would kind of start slipping and I could feel it moving out. And I would have partial dislocations or I'd see my kind of leg curl in on itself and my toes pointing inwards. And I'd be going, "Oh my God, oh my God, oh my God!" And Paul would be going, "What should I do? What should I do?" So we're both panicking and we learned to just stop. So we went from a place where we were panicking, panicking, panicking, and I mean there were tears. I was crying, he was swearing and I'd actually have to go, "We need to stop," and we'd just lie there and we'd chat.
SIMON - That's a huge level of intimacy, that I can see people without disabilities that it could be cold and there's no chat.
XANDRA- We found the best thing…
EMMA - The weather, or sexy talk. Which do you do to sort of…?
XANDRA- Distraction. It's distraction. We could carry on with the sexy talk but I need to be distracted from what's going on. And it does stop the momentum of how you're feeling. But as you're saying, in terms of an intimacy thing, actually we're still together, we're still intimate, and it doesn't mean that we have to be going at it for it to be intimate, we can just be there and we could be naked, sharing something.
SIMON - Post-surgery, the first time you have sex is that exciting or is that terrifying?
XANDRA- Terrifying. Absolutely terrifying. It was scary, yeah. You've got fragile bones. I had some, they didn't heal correctly, so I could feel them moving around. So it's not very nice, so you do have to be careful of the position and the weightbearing and that kind of thing. And even kind of holding bum cheeks up out of the way so that you're not kind of pressing on a part that's broken, it can be quite difficult. The first time that you are you feel like you're doing it just to get it out of the way so that you've done it for the first time so that you can start getting used to, well how do we do this now?
EMMA - We touched on this earlier. You have Paul and you've been with him quite a while and you've come to lots and lots of agreements and understandings but it wasn't always like that. You told some nightmare stories in your book about how you acted in relationships but then how other people acted as well.
XANDRA- I was foul, yeah.
SIMON - And that level that you hid it. That you would go through hell just to hide it.
XANDRA- The dating side of things I did hide it. When I first got to know somebody I did hide it. With Paul it was different, I kind of knew that there was something quite special about when I met him so I thought I can't really lie. But anybody I've dated in the past I wouldn't say anything, and when it was starting to get to a point, well actually I thought am I really bothered about this person? And if I thought well I've had enough of this now and he's being too nosy then I would just stop it there. One of the examples I've used in the book is about finishing with somebody when he was having a housewarming.
EMMA - Nice. So they were having a housewarming party and you said sorry…
XANDRA- Yeah. I took a bottle of wine and, well it depends how you want to look at it really, but yeah that's not particularly nice.
EMMA - Then the shoe was on the other foot and someone left you.
XANDRA- They did, yes. It's interesting to see it from two different perspectives. So I was in a relationship with somebody for about two years and we hadn't been living together very long and I was - one of the osteotomies again - I was in bed, I was only just two days home from hospital, and he told me that he couldn't do it, that he couldn't cope. And I was just staring at him going, "What on earth am I supposed to do now?"
EMMA - He couldn't cope after like two days of looking after you?
XANDRA- Yes, so just the washing and the washing up and helping me put my underwear on and helping me in and out of the bath and that kind of thing. Yeah, couldn't cope with it. So I was very angry. I was very angry for a long time after that, which probably explains why so many people after that got treated quite badly by me. It's not an excuse.
SIMON - Well just one little line that resonated, I think it was Paul, he will do things and you'll say, "I can do this," and he says, "Yeah, but you don't have to."
XANDRA- That's very true.
SIMON - And I totally got that. That's that bit of when do we let our independence go and it's not necessarily it's part of a relationship. I thought that was spot on.
XANDRAI - still have a little part of clinging to independence. I do feel like I need to be self-sufficient, and Paul was very understanding of that, and it is important to me because I fought so long to be able to have that. Things like do my own shopping and going to work, and he's very understanding in terms of that. And oh, he put up with a lot. He's a very patient man. He really did put up with a lot.
EMMA - Quick fire questions for both the hippies. Three best positions for a hippie?
XANDRA- Oh, I would absolutely say it's spooning, but it depends which side you've got a bad side on.
SIMON - I prefer if she's on top.
EMMA - Xandra?
XANDRA- If she's a hippie she might struggle but if you're just the only hippie then you're better off being underneath. So from a male perspective that's very… yeah.
SIMON - It's the third question I ask them on a date.
EMMA - Yeah. Your third position?
XANDRA- It's a very difficult one to explain, but the non hippie male on his side and me as a female hippie on my back with legs over.
EMMA - Quick fire question. Best ways to deal with the pain?
XANDRA- A nice long bath before.
SIMON - And sometimes, as you say in the book, a painkiller a little bit beforehand.
EMMA - Top tips for partners?
XANDRA- Being very open minded.
EMMA - Communication.
XANDRA- It's a huge thing. I probably should have started with that.
EMMA - The end song on today's show is called 'Communication'. There you go, we've totally bookended that.
SIMON - And no blame. Laugh and what's the best way? We can find a way through this and whatever we need to do so we're both happy.
XANDRA- Absolutely, yeah. The biggest part of it is meeting kind of somewhere in the middle. [laughs]
SIMON - Ahey! No, I'm just glad these questions are blooming over. I was terrified. Xandra, tell us about your book.
XANDRA- So my book is available to buy on Amazon and on my own website as well, and it's called 'Living with hip dysplasia' so there's a lot of blogs on there, but it's about a guide to dating, it's a guide to sex, it's a guide to relationships, and it's if you've got hip arthritis or if you're having any type of hip surgery or hip replacements. The book is called 'Sex…with these hips?!'
EMMA - I, as I've said already, I'm a bit obsessed with sex and disability at the moment, and that's because there's so little out there in the way of information, but also fun stuff, so we'd really like to change that. So if you've got a story to tell or you've got an idea about what you want us to talk about in relation to intimacy, relationships, sex, or possibly more importantly, no sex, contact us on the usual channels. We are email@example.com on the email, and bbcouch on Facebook and Twitter. And don't worry about identification issues, names can be changed and we will be as discrete as you want us to be. So do come and tell us your truth so that we can actually create something that disabled people want to hear.
SIMON - Now, moving on. Do you remember Dr Phil? He had a regular feature on Oprah years ago and has his own show now in the US. On a recent episode the relationships expert claimed that an able-bodied woman dating a disabled man, and I quote, 'can be his lover or you can be his care giver, but you can't be both. It won't work. 100 out of 100 times this won't work'. End of quote.
There was a huge backlash online, and the hashtag, 100 out of 100 started trending. In your book you say that you don't know if you could have cared for your husband if the tables had been turned and he'd had dodgy hips. What do you think about Dr Phil's statement?
XANDRA - Oh, I feel very, very strongly about that. So I mean even my book I did mention about if the tables were turned would I be able to, and I certainly don't feel that way anymore. I mean I've had a situation recently where the tables were turned and Paul was in hospital and I struggled to be in the position whereby I had to watch him go through something, but I would never have left his side. It does depend on the individual at the end of the day, everybody has their own opinions of what they want and how they want to live, but we're all so different and what is there, something like 15 billion people in the world are disabled? I mean, how on earth would you ever get anywhere in life if we didn't have it as part of our life.
EMMA - Apparently it was part of his specialism when he practised, was disability, so goodness me. When disabled people go out with the temporarily able-bodied…
SIMON - Oh?
EMMA - …it's apparently known as an interable relationship. Mel? Your husband is disabled.
MEL - He is.
EMMA - What do you think about what Dr Phil said?
MEL - Ridiculous. I have many questions why he came up with that statement and was so adamant about it. To some extent all relationships involve some sort of care, so to single out care in a disabled relationship is different. It can in some ways be different and the frequency can be different but it's there in all relationships you would hope. So yeah, I totally disagree with that statement. With my relationship with my husband, Steve, we've had all options really, so I have been his PA for a year by choice. We usually have paid PAs in place but sometimes we have difficulty recruiting and then I will be the full time PA.
EMMA - And does that change your relationship? Does it cause friction?
MEL - It can do, and I've spoken to lots of different couples and I think it comes back to communication. So if there are problems in the relationship anyway then they will be exacerbated. So often I'll talk to couples and I'll say, "Well, have you spoken to your partner about this?" "No, we don't talk about these things," or, "They fly off the handle when I try and bring it up." So I think it is so important that the groundwork of communication is there. I think there are times or when I'm particularly fatigued that it's difficult but then likewise there are times when he's frustrated with his body or with what's happened to him or how other people have treated him, that his tolerance is low. What makes it possible is to talk and be open about it, open about some of the difficult emotions like owing guilt, resentment.
Let's say for example I want to go and visit my family whose houses are not accessible, we have this difficult discussion that Steve wants me to go away and see my family but if I go away then the PA is there fulltime and obviously he would prefer to spend time with me. We both experience guilt and owing and have to talk about it where we come to a decision. And I sometimes think like society's obsessed with win lose decisions and you must make the right choice. And I think what I've learnt is that's not always as clear cut, sometimes it's okay, this is just a decision that we're going to make and…
EMMA - Neither one is exactly the right thing, but neither one's wrong either.
MEL - Yes, of course I would love him to come on holiday to see my family as well. There's a mixture of emotions with just that example.
SIMON - I'm curious about Dr Phil's relationship, because I bet his partner's not thrilled right now. But I can think of a few relationships like this. I know one where they have a PA during the general times and then when they go on holiday they drop the PA because they want that level of intimacy. But I also know the disabled person and the partner, support worker or whatever, there's a mental change which says when I'm doing that part of it that is different from our regular intimate relationship and whether you can separate that.
Because if you've just had a massive row and then someone's got to help you do something that's not negotiable, so you've got to almost kind of put that row you've just had aside and say I still need to do what I need to do.
MEL - That's a really good point, Simon, and there have been times when Steve has kind of refused my help if we've had a row, and I will say, "Come on, you still need to do this thing."
XANDRA - I've been guilty of that as well though to be fair. "I'll do it myself!"
EMMA - Absolutely, I've definitely…
SIMON - But then if you can't do it you're really stuck. Oh, I'm sorry.
EMMA - It's amazing what you can put off until tomorrow. [laughter]
MEL - Well, it depends how stubborn you are, it definitely does.
SIMON - Dr Phil's segment prompted many Twitter and Instagram users to post pictures of themselves in so called interable relationships under the hashtag 100 out of 100.
EMMA - There have been lots of pictures of people saying "20th wedding anniversary, we're doing absolutely fine," and there have been other people saying, "I'm in chronic pain. I woke up this morning to my locker stacked up with books and a drink and tissues and everything I need for the day. And I give him just as much. I do the calendar and I do all the non physical bits. That's how we roll and that's how it works." And I think my favourite is a YouTube channel called Squirmy and Grubs and it's by Hannah Aylward who is non disabled and Shane Burcaw who has SMA, spinal muscular atrophy.
XANDRA- Oh, I saw, yes.
EMMA - He's a wheelchair user. And they basically make videos normalising this interable relationship. Their videos are so good. And they were actually asked to come on Dr Phil, they decided not to do it, and we did check and Dr Phil has chosen not to respond to anybody's tweets or anything, so we're not leaving him out, he has chosen not to respond. I have a wee clip from the YouTube video where they're responding to the Dr Phil episode. Let's hear a little clip.
Hannah: It's really difficult to be in a relationship with someone who has a disability and not help them. Like I'm actually confused as to what Dr Phil means when he's like, "You only get to do girlfriend activities." He said this, he was like, "You can watch movies ,you can laugh together," so if that boy wants a piece of popcorn is she not allowed to put it in his mouth? Like I'm actually confused. Like it's almost impossible and there's no reason that you can't help someone like eat popcorn while you're watching a movie and that would ruin your relationship. It doesn't make any sense.
Shane: Yeah. And the message that Dr Phil is giving is that if you try to do caregiving and be in love it will fail.
Hannah: Well, that's what he stated as a fact.
Shane: 100 out of 100… just an odd way to phrase that. 100 out of 100 times.
SIMON - I thought they were fabulous. I really like the way they're approaching it.
MEL - I just want to jump in and say I know there's lots of listeners out there and obviously people I talk to who are single and are struggling with dating, and it is a fact, statistical fact, that relationships do break up more often when there's a disability involved. We shouldn't deny that, but to say 100 out of 100 is definitely not true.
SIMON - That's a good point.
XANDRA - If your relationship breaks down because of disability then obviously that person isn't right for you.
MEL - And I think what's important as well to mention is that disability is, academically it's called a minority group. And some people are comfortable with being associated with a minority group and other people aren't. So like in my instance I was brought up in another country, I was physically very different, I was in a religious minority, so I grew up with lots of minorities and I think that prepared me for, actually being okay and being proud of difference. But obviously there are some people who really just want to be mainstream and find the caring tasks difficult.
SIMON - One of the issues in the Dr Phil segment was around the idea that when one partner becomes the other one's care giver that that changes the dynamics of the relationship. Does this crop up in your work?
MEL - Yes, it does. So actually yesterday I was giving a workshop to carers, most of them were generally slightly older people, so in their 60s, and I touched on intimacy. I get a lot of rolling eyes and, "Oh we haven't had sex for 20 years," so it can impact but I try and go along and encourage and I talk to people where one partner has got Alzheimer's, so there are cognitive issues that they feel their partner's not even there.
And I still try and encourage to have that balance. It can't just be only care tasks. Try and connect to your partner by looking at photos, by hugging, holding hands. Even if you aren't able to have sex or don't want to there are lots of other ways to reconnect. And me and my partner make a conscious effort to do that. It's like we're all batteries and there's more things draining the battery when you're living with disability so you need to make a more conscious effort of the stuff going into the battery.
EMMA - So it's about thinking about alternative ways of connecting. And I guess the first thing to go out of the window probably often is sex because it's considered in the situation as a less important part.
MEL - But actually it's not, because I think we all know if you have sex it releases oxytocin when you're in loving relationships and that is a really important hormone for our wellbeing, our immunity. Simon was touching on that humour is a really good coping strategy but also making sure there is someone in your life, and whether that's a friend if you're single or if you're in a relationship that there's someone you can have that release of that oxytocin so that you feel valued.
SIMON - Xander, you've been looking like you want to jump in.
XANDRA- Oh, I've got to agree with the quality of life statement. When I've had hospital appointments in the past and when you go to assessments in terms of how is this affecting your life, never does it come up about relationships or your interactions or even sex. It's not seen or classed as anything in terms of a quality of life. So every time I've filled out a sheet in the past it says, "Can you get up and down stairs? Can you take a bath?" Well, not brilliantly but also, guess what, I can't do this either.
And I struggle to be able to have conversations because I'm getting depressed now and getting anxiety because of this health condition. And also because I'm immobile and my hips are getting worse it means that my sex life's been affected and it's affected my personal relationship. So they don't assess that in terms of there's an importance there and nobody wants to talk about it, and I think that's one of the sad things really, that it's not considered.
SIMON - Or as Emma said it's seen as a luxury or not a priority.
XANDRA- Yeah, it seems crazy to me that if you don't live with a disability you just take it for granted.
MEL - Dating, sex, relationships, finding close friends should be the number one priority.
EMMA - You said something about hugs earlier, about people when they're in a very medical situation or wheelchair users get less hugs.
SIMON - I don't want to be a killjoy but I kind of feel the way we're moving, that level of just affection, people are very wary of doing that unless that's misconstrued or inappropriate.
EMMA - Yes, and especially in like a care setting.
SIMON - Yeah.
EMMA - Oh, but everybody needs a hug. Mel, we're going to stick with you. You are not a therapist to the stars, you are a therapist to the disabled. [laughter]
MEL - Oh, that sounds horrible. Yeah, I know. The disabled. It was deliberate.
EMMA - Well I would imagine you're just as in demand as like a very high profile therapist to the stars because I don't know many disabled people who haven't had therapy. So how did that become your niche?
MEL - My partner runs a disability company and I was training to be a therapist, and number one, I was surprised that there was hardly any training around disability on my course, and number two, when I went to shows with him I started talking to people and lots of people were just crying in the stalls. And I'd be like wow, we're here in public and you're telling me all this stuff. And so it dawned on me that actually there's a lot of focus on physical rehabilitation but very little on emotional wellbeing. With acquired injuries it's okay, that's it, we've done the best we can, go home now. And people hit this crisis point where they go home and they've left the cocoon of hospital and they don't know how they're going to manage house, relationships, children, jobs, hobbies, pubs, lifestyle and it can be very, very overwhelming.
EMMA - Beth actually had an article, Beth Rose, my colleague, on Ouch last week about a person who acquired an injury and spent a certain amount of time dealing with the injury and all the physical aspects of life, and after a certain amount of time of feeling okay the mental side of things just hit her like, boof. It's funny isn't it, that mental health thing, it just sometimes takes a while to kick in?
MEL - Yeah, and I think what's difficult and not necessarily the fault of the NHS but they are very time limited so you can go to your GP and you can ask for IAPT therapy sessions. IAPT is Improving Access to Psychological Therapies. So if you go to your GP and you say I've got anxiety or I feel depressed you can be referred for that. But often it's only six sessions and it's usually only cognitive behavioural therapy and it's very rare that you will speak to anyone who has any disability experience.
SIMON - I had counselling and I had chosen someone who didn't have disability experience. I was fearful that that would be the hanger that we put all the issues on. Do you think it's necessary that someone has the training, or do you think pros and cons?
MEL - Well, it can go either way. So if you talk to a therapist who has no disability experience you can still get that everything will be put onto the disability. There are lots of studies that have been done that the therapist has said, "Oh, your anger is because of your disability because you've not accepted it." That can happen, or it can just cause so much discomfort in the therapist that they actually never talk about it when sometimes it might be relevant. I'm sure there are lots of people who don't come to our service because they think all we're going to harp on about is the disability. But it's just having that awareness of well let's try and unpick what is your stuff and what isn't your stuff.
EMMA - So it's about you having a bit more insight, almost into the bits of disability that aren't part of the mental health thing?
MEL - Yeah, so in the way that a lot of people find the social model of disability really helpful because it helps them to see that actually a lot of what I'm experiencing is because society's not set up for me and there can be a real kind of empowering that comes with that. At the same time the social model a little bit ignores that some people will experience difficulties dealing with how you get treated by some healthcare professionals or by members of the public. Because I have that knowledge I can help people unpick that and look at strategies to cope better with those things.
EMMA - During the last show, Simon, you told a story about an experience that you had at a car wash, and it caused a sharp intake of breath in the studio but we never had the time to delve deeper. So, Simon, could you relive that very painful memory for us again. [laughter]
SIMON - Yeah, thanks. So, simply I drove up to a car wash and it's one of those ones where they all kind of swoop round your car and clean it. And I got out of my car because they were going to vacuum the inside and as I got out they started laughing. Not bang in my face, but they kind of walked over to each other, nudged each other and laughed. And weirdly, just yesterday in the supermarket there were two young women who, we were coming towards each other in the aisle, and they nudged each other and started laughing, and that time I mouthed the word pathetic to get my little bit in.
EMMA - Is that the drip, drip, Mel? Is that a prime example of…?
MEL - Yeah, and it's how do you shake that off? Do you carry that with you for the rest of the day and if you've had lots of those experiences throughout the week I am sure for most people they would say they would struggle with their wellbeing and how they feel about themselves if you haven't got something to kind of compensate. So if you can't come home and talk to your partner about this crazy thing happened to me today and I wish I could have said X Y and Z, because we're not always very quick on the comebacks.
There's definitely evidence that that drip, drip effect affects our wellbeing if you have so much of these different experiences in the outside world. We're in this constant state of anxiety and it's very easy to knock us over into the state of crisis. So again it comes back to we have to work harder to bring ourselves back to that state of rest.
SIMON - We debated this and we kind of ground to a halt, because obviously as you say people are different and a bit of me said, yeah I might carry it for the day but then I let it go, until I have to bring it up on the show again, because I do forget about it a week later. But the bit you just said is if you haven't got a compensation. And I'm realising maybe my compensation is the job that I do, I go out and talk about disability, so that then becomes a story that I will tell other people that then I get some strength from because it turns it into something else. I mean I've also had counselling as well, so maybe that's my release.
MEL - Yeah, so you've got lots of different ways to release that and I'm assuming there's people in your life who are also giving you positive messages about who you are. I guess I work with quite a few people who are single, quite isolated, and so all they're having is a lot of these negative drip, drip experiences from members of the public when they go to medical appointments, when they have all these assessments for work capability in all these things. It's trying to help people be aware that there's so many things draining your battery. Where is the bit going in telling you you're okay as you are?
SIMON - Just last week I was abroad and I was feeling a bit low and I turned up in the hotel and I was really down and here's the irony, so I deliberately went outside and I happened to be in New York and it was Central Park, a spring day on a Sunday, and then there's six year old kids who look at me and I smile or I wink and we have this little interaction and then there were the biggest, scariest New York guys who would give me this little flick of the head and they'd just acknowledge me and it was a sign of respect. So I kind of feed off that sometimes as well, that difference of people looking at me.
EMMA - That level of not having anonymity. That notoriety? That's not the right word either. Well maybe it is, I don't know, but people look at you because you're different and sometimes that's good and sometimes that's bad.
SIMON - Exactly. And I don't know which way it's going to go, but that day I went back to my hotel room and felt happy because of it. I mean, it's just bizarre.
MEL - There can be some real beautiful moments, so since we had a child my husband had a lot more interactions and some lovely things that people say. And sometimes people's comments are so ridiculous that they just make you laugh. So we were walking up the hill in our village once and somebody said, "Oh, thank you for your war effort," to my husband. [laughs] Sometimes you can just really laugh about it and it's a story we say to people now, oh yeah, you know, you're the war hero.
EMMA - He was never in a way I assume?
MEL - And he was never in a war. Sometimes there are beautiful moments as well and I wish there were more of them. And you can see countless opportunities, particularly children can be so open and so uninhibited.
EMMA - Before we get on to the strategies I just want to talk a little bit about internalised stuff. Before I did this show I had to have some serious, serious chats with myself because… So I've been writing the script for this show for years and years. I do shorter podcasts where there's no script. This has a script and I struggle to read a script because my braille reading isn't quick enough and I have to listen to it on my laptop. And I learned it basically, I learned the script.
SIMON - You did.
EMMA - But as a non disabled person I am absolutely able to do this job, but my disabled person brain was like your laptop will die or you won't have your script or you won't be able to learn it, so maybe you shouldn't do this. Is that internalised oppression?
MEL - So we have the structural disable-ism which everyone understands. I think that's the structural barriers like Simon was saying. If your hotel room's not right. Then beyond that we have the psychological effects of all of those things. You know, you can't get into the pub, how does that affect you emotionally? Then you have your impairment and how that affects your activity, but you also have the psychological part of how your impairment affects your wellbeing. And then you have the structural stuff and also how your interactions with others all affect your wellbeing.
And so we have certain illusions in society around independence, control, fixing stuff. Status; you're only productive if you're working. Beauty, all of these things, and unfortunately that can lead to negative messages around disability. And when we take those onboard and we start to believe it, that we're not as good because it takes us longer or we can't do it in the same way, then that is internalised oppression. That can stop us from going out there, so sometimes people say to me, "I've just stopped going out because it's just easier."
XANDRA- Very much done that myself when I was in a situation whereby my mobility was getting worse, or drawing attention to myself or having to explain why I can't sit for too long or stand for too long. And that's what it is, it's very easy to talk yourself out of something. And even today in coming to London, and oh my gosh, I've got to get on the train and what if people bang into me? And maybe I shouldn't go. Maybe I'll just call up and say, "Oh, can you talk to me on the phone?" It's a big, big deal to do that, and I'll walk out of here today and I'll be buzzing. You have to almost have more resilience to be able to get over the internalised bit where you can talk yourself out of something.
EMMA - Is that basically the answer to everything, Mel, resilience?
MEL - Yeah, I mean resilience can have a negative connotation, kind of like oh you're disabled, you need to buck up. [laughter] So no, that's not how I say resilience is. This stuff is out there, we're trying to change society, it's slow, so in the meantime what can you do to cope better?
SIMON - And just to be semantic, when we do the personal development I say at the moment you're coping but I want you to change that to managing. So you are all over this, this is your bag. You need to own this, you need to get it, you need to be able to explain it, you need to be able to know the best stuff for you. Coping, I always feel it's slightly that it's all coming at you, but managing slightly changes it for me.
MEL - Yeah.
XANDRA- I agree with that because at least you're in control of it, you're walking through your life and doing what you need to do and as you put, managing it. Coping is quite a kind of I'm struggling. I'm struggling and I'll just do what I need to do to just get by.
EMMA - Strategies, Mel. Can you give us some strategies to help us manage better?
MEL - Okay. So I'll talk you through a few things and if you want to we can actually do one on air. I think one of the blogs I wrote about was about marginal gains, and a lot of stuff with living with disability, it takes more time and energy. It takes a bit of dedication to change it, but to counter this drip, drip we also need to look at just little things that we can do to change in our lives to make things a bit easier.
Firstly, what we've already talked about today is peer support and whether that's through your partner or friends it's so important to make sure you're not isolated. Nowadays with technology there's so many forums and places that you can connect to people, talk to lots of people about our bodies and that we can maximise our energy and maximise our health and that will give us resilience. So looking at your diet, your lifestyle, will help to not only increase your immunity but it will give you kind of like an energy buffer against some of these drains. so reducing smoking, drinking. Eat more fruit and veg, all of those things which I know are not easy for some…
EMMA - That is a huge topic, that's why we're going to invite you back for a series of chats about mental health because I think there's so many things to unpick. So while I'm on a roll here I'll just say if there's some element of mental health and you're a disabled person that you would like Mel to talk about and discuss and maybe you would like to come on and talk about it with her, contact us. Email firstname.lastname@example.org or we are on Facebook and Twitter @bbcouch. And Mel wants to help. We talk about mental health so much but do we talk about mental health on top of being a disabled person? Not very much.
MEL - Yeah, and there's that double whammy that a lot of people talk to me about, you know, I'm already physically disabled, do I want to tell people that I'm struggling emotionally or psychologically? So there's definitely a stigma with that. I also think there are opportunities in a way that once you kind of can work through some of the difficulties that you might be experiencing being disabled does give you an opportunity to kind of redefine your identity.
Once you realise that you're not going to be mainstream there is an amazing amount of freedom and joy that comes from deciding who you want to be, realising that you don't have to follow society's norms and pressures.
XANDRA- I can appreciate what you're saying there in terms of I had so much focus on my health and the things I lost in my life I forgot about the things that I'm good at, that I can do. But so much affected me in terms of managing pain and managing my loss of mobility you don't see that. It's all that I felt my day was, was just getting through the day, and it's only through little things. I mean my hip replacements have absolutely helped and coming off the painkillers.
SIMON - Describe that again for Emma. No, don't do it. [laughter] You've redefined yourself. You're an author.
XANDRA- Yeah. Yeah, I'm really pleased about that, it's been huge.
EMMA - And would you have done that without the dodgy hips?
XANDRA- Well this is it, it's led to that and my experiences have led me here.
EMMA - So Mel, give us a strategy that we can do on air. We'll all get onboard and I'm going to sit up straight and get myself ready.
MEL - Okay. So this strategy is called STAR, S-T-A-R, and this is useful when you can feel that you're getting into a state of maybe overwhelm or panic or someone is really getting on your nerves out there. So the S stands for smile. T for take a breath. A for and, and R is for relax. Now the smile, if we actually physically smile we are kind of overriding this fight, flight mechanism in our brains. And if you don't feel like smiling you can actually just push your lips up. And then you take a breath and maybe count to five and then when you breathe out you count for seven. And it's very important that the out breath is longer, because again that's also helping to switch off the fight flight mechanism.
So shall we try it all together? Okay, so we smile. Take a breath in. One, two, three, four. And breathe out. One, two, three, four, five, six, as long as you can keep going. And you might want to add as you're breathing out something positive like I am letting go of this. I'm just thinking of the disabled parking issues, and when you come back to your car and someone has blocked you in that might be a good time to try STAR. Give yourself a few moments to reflect and decide on what's the next course of action.
EMMA - Mel, thank you so much for joining us and thank you for that really helpful strategy as well. I'm going to do that at various times during every day basically. Thank you. And Xandra, thank you so much as well, it's been an absolute pleasure.
XANDRA - Thank you very, very much for having me, I really enjoyed it.
SIMON - That's it for the April 2019 Ouch talk show. Thanks to our guests Xandra Lee and Mel Halacre. The show was produced by Beth Rose with Emma Tracey and Niamh Hughes. The studio manager was Martin Appleby.
EMMA - Kate and Simon are live from the I'm Here, Where Are You? festival at Cambridge Junction in May. And a shorter podcast will drop onto your phone from the Ouch feed most weeks in between, so keep listening.
SIMON - So how are you feeling, Emma? First show you're presenting?
EMMA - Oh, I really loved it. And it's so different being the other side of the glass.
SIMON - It's been lovely having you.
EMMA - Thank you.
SIMON - Music this month comes from Scottish rock singer, Lady Geraldine. She was profoundly deaf until her early 20s when 30% of her hearing was then restored due to surgery. We'll leave you with Lady Geraldine's latest song, 'Communication'. That's what it's all about. Goodbye.
EMMA - Bye.
[music: Lady Geraldine, 'Communication]