Ben the carer

On this episode of The Undressing Disability Podcast, Zoe and Jennie chat with Ben about his time as a carer, and how he helped a client with their first sexual experience.

Transcript

JENNIE: Hello and welcome to series three of the Undressing Disability Podcast, where we talk all things sex and disability. With me, one of your host, Jennie Williams, and my lovely co host, Zoe Lloyd. We have so many exciting guests on this series, and we really hope you enjoy it just as much as we do.

MUSIC 

JENNIE: On this episode of The Undressing Disability Podcast, Zoe and I chat with Ben about his time as a carer, and how he helped a client with their first sexual experience.

Hello, everybody. And today we are talking to Ben. We are going to be talking about sex workers, getting sex when it's not always that easy to have sex if you've got a disability which can be severe enough to stop you being able to go out and naturally meets someone.

And Ben, we started having this conversation with you, actually, it's quite an unusual setup. Zoe's here, do you want to explain how this conversation came about Zoe?

ZOE: Yeah, so I employed Ben for some work at my house and then we'd had a conversation and I was talking about our charity and what we do and what we're passionate about, and he said, oh, my God, Yeah, I had an experience like that when I was younger and kindly, you said you'd support us in whatever you could do to help us. So I did remember that, as we always do, we call on contacts and asked you if you wanted to be a guest on this podcast, because it's a really important and passionate subject for us, with sex and disability being the whole main point of these podcasts.

Thank you for sharing your story with me and hopefully it'll encourage other people to get talking about it. 

JENNIE; So, Ben, unusually, normally when we mention what we do as a charity, people go, oh, sex and disability, wow, I've never even thought about that. Never even come into our head. It's never been a problem or it's never been something that I've even thought about, but obviously it's been different for you. So do you mind kind of telling us a little bit from the beginning of your story? 

BEN: Yeah, of course. So I cared for a young lad, he was 14, and he's got muscular dystrophy. Duchenne muscular dystrophy, which for anyone that isn't aware of what that entails, I suppose the best way to describe it is a CD that has got scratch on it and it just keeps skipping and it doesn't read the muscle growth. So you tend to get diagnosed typically around the age of five or six,
and the muscle that you have built just slowly deteriorates. 

He could still move his hands and his fingers and his toes, so that never stopped him on the Xbox ever, because they're tendons so he was still able to converse with his school peers and he still lived a relatively normal life.

So, yeah, I started to do respite just to kind of take the pressure off his Mum. And by doing sleepovers, because I guess if you imagine how many times you toss and turn and wiggle about in bed and go from one side to the other, he couldn't do that. Sometimes you just wanted the cold side of the pillow and you would be up and down, up and down, up and down constantly until he'd settle. And then, I guess, even with pressure release mattress, it still kind of pushed on those pressure points, so you would have to turn him throughout the night. 

So, yeah, I mean, that massively helped his Mum get two or three nights full sleep a week. 

ZOE: Yeah. That's so important, isn't it? And for her to be able to cope. So you were going in there for a few nights a week, then? Is that what you're doing? Built up quite a good relationship with him?

BEN: Yeah, very good. We also asked if we could switch the care hours that was dedicated to the Mum, so we also took him out to the beach and an RAF base and loads of things like that, and dipped his feet in the water, because he hasn't done that since he was a little boy.

And between myself and my partner, lifted him out of his wheelchair and dipped his toes in the water and stuff like that, we wanted to ensure that he had just the same experiences and as much as possible. 

ZOE: Yeah. Living a full life, as it were. 

BEN:Yeah, that's right. 

ZOE: So then I guess we sort of move on to the crux of the story, being that there was obviously a conversation had about sex. I don't know if you want to speak about how that came up. I'm guessing it's because you guys were close?

BEN: Yes, we had lots of conversations surrounding sex and will it ever be possible for me, this kind of evolved, I guess, after I'd built a relationship with him, and that trust, too. So we'll probably talk him when he was I started looking after him when he was probably about 14 and probably didn't evolve to them kind of conversations until he was probably 16/17.

And we had very open conversations and he said, I know that I'm different to everybody else and girls don't look at me the same at school, and it doesn't matter how I have my haircut and things like that. And those conversations, I had to sit and hold back my tears and talked to him like he was just anybody else and, and reassure him that, Chris, that's absolutely possible. Don't just discount yourself from the potential of that ever happening.

So, I mean, we did discuss it and I did build his confidence, certainly. 

ZOE: Were you nervous, though, that you could fulfil that for him? 

BEN: No, not at all. To be honest, Zoe, it was actually a sense of pride that I could facilitate something like that for Chris. Everyone has that, right. And that option if they want to. And if they're able to make that choice, then why the hell not? 

JENNIE: Yeah, so you mentioned kind of facilitate and choice, but that's quite a big gap, isn't there, from going, okay, I'm interested in being sexually active when I'm 16/17 years old, which perfectly legal, and there's lots of people having sex around that age, to actually going right now, I want to be able to do something about it. 

So in making sure that, as Zoe said, kind of setting people up for failure, so because he was saying he was struggling, meeting girls at school and chatting to girls, what did you do to support him?

BEN: So I did have the initial thought, which I think is probably a lot of people's go to, of a sex worker as a possibility. And initially Chris was really up for the idea and very, very keen. He said, does it come with a catalogue? And I said, not necessarily. So I was talking to my brother and his girlfriend, and his girlfriend made a suggestion and said, I can speak to my friend. I'm pretty sure she would. So I spoke to her directly and relayed parts of conversations that I'd had with Chris, but obviously leaving out some bits that he did put a lot of trust in me with.

But the main objective, obviously, was to fulfil his wish and also let her know, that know, well the lack of confidence for Chris. And that was a big thing,

ZOE: Because I think that is so important, isn't it, going into these kind of situations? People's main objective might be. Right, I did it. I got my end away, I did it. But what we don't know is how we're going to feel afterwards. And also trusting in that person to cope well from the sex worker or the friend or whatever, that they can manage those emotions. Because it's really scary being that vulnerable and inexperienced, isn't it? That's a big role to take on for that girl to have done that, isn't it?

BEN: It was. And I'll always be extremely grateful for what she did. Her and I had the conversation, she said that she would like to come and meet Chris and she was like, yeah, absolutely, why not? Why can't he? 

JENNIE: Can I just ask a few questions before that? The girl that agreed to do it, has she had ever done any sex work before? Was money being talked about or is this is just something that she wanted to do? 

BEN: No, it was just something that she wanted to do. 

JENNIE: Right. That's really interesting and I don't think we've spoken to many people in this situation, 

BEN: So, yeah, it was simply just as straightforward as that. It was something that she wanted to do for Chris. She understood that it's uncertain how many years he might have left. Essentially the heart's a muscle and he was deteriorating. He had undergone some horrific surgery on his spine as well. You know, throughout the time that I was looking after him to prolong his life, and she was very up for it and wanted to do that.

So she met Chris. Each of them you know, kind of consented. And I remember when she left, I said to Chris, I went, are, you know, you want to do this? And he was like, yeah, she's fit. Okay, that's a green light then.

ZOE: Yeah. You don't want to sleep with an ugly one, do you? I don't fancy you, but I'll have you. OK.

JENNIE: But you know what? But we joke about that, but that is an issue for a lot of people. I've arranged a sex worker for somebody before and she travelled and she turned up and he said she just didn't smell right. She didn't smell and smell is a really important thing for lots. It's really important for me. It wasn't right, but by that point, he spent the money he'd paid her and it was quite expensive and then he was like so that's kind of opportunity lost. So we kind of joke about it, but that is just a given that not, especially if you're looking for a sex worker, not everybody is inverted commons, willing and prepared to sleep with a disabled person, are they? There are sex workers that specifically work with disabled people. And so maybe it is you just got to take what you're given for a lot of people, which isn't okay. 

BEN: No, it's not, because I think everybody, regardless of disability or not, you still have a preference, you still have a type, whether it be blonde hair, brown hair. 

JENNIE: You want to fancy someone, don't you? 

BEN: Yeah, of course. 

ZOE: Because when we look at the confidence issue and how you're going to feel afterwards, God, if you've then slept with someone that you really don't fancy, and you've literally done the motion to say, oh, I've lost my virginity, how the hell are you going to feel? We all want that connection. 

JENNIE: So equally it goes from her as well, like, she obviously liked Chris and they got on and fancied Chris to the point where she was saying I want to do this. So what was the conversation with her afterwards? 

BEN: I asked her and said are you still comfortable doing this? And so she was like, yeah, absolutely. So she was like, It's important that that guy loses virginity. And so she said, I feel honoured that she gets to do that for him.

JENNIE: It's a hard balance, isn't it? Because on one hand, you don't want kind of like hero worship a nondisabled, for sleeping with a disabled person. But at the same time, it is a big deal to turn around and recognise the situation for what it is and for her to say, OK, I want to do this, I want to do this with Chris. So how was it like setting it up? Because he was living at home, wasn't he, with his Mum?

BEN: Yeah, that's right. So between me and his Mum, because he had a hoist for the shower and then a shower bed and like, a big wet room. So between me and his Mum, we scrubbed him and shaved his stubble off. 

JENNIE: His mum knew?

BEN: Yeah, absolutely. And she was a huge advocate for this. 

ZOE: She was? That's good. 

BEN: Yeah. I'm very appreciative of what we were doing for him. We got him ready. I took over some of my nice aftershave and spritzed him. 

ZOE: Ben does always smell very nice.

JENNIE: I can't smell you through zoom Ben unfortunately. 

BEN: We kind of got him ready and we had a conversation as well with her first, because she asked, you know, what can I do? What can't I do? Will I hurt him if you know, I do different positions and things like, you know, we quite openly said, Chris will tell you he will not hold back. He's very forward. He's quite dry, quite a dry sense of humour. So you need to be on the ball with it. So she's like, no, okay. That's absolutely fine. So we left condoms and we actually went over the road to the pub and we just said, text us when you're done and if you need anything. 

And do you know what was lovely was that afterwards it actually makes me feel emotional just saying it out loud.. 

ZOE: I can see that in your face. 

BEN: She laid with him and stroked his hair and snuggled into him and stuff. And it wasn't just a wham, bam, thank you, ma'am. And I thought that was really kind. 

ZOE: That's lovely. 

BEN: Lovely that she did that for him and said that I hope that I made it special for you and stuff. I mean, he was grinning like a Cheshire cat.

ZOE: Hell yeah, you did. 

BEN: And I think they actually did it three times in an hour.

JENNIE: Three times in an hour!

BEN: Yeah.

ZOE: But that's really important that she created that intimacy. Like you say, it's not a cold experience where it's an exchange and she walks out and then he's laid shame. 

BEN: And that wasn't even discussed either. Zoe that was something that because it wasn't really kind of scripted either. I mean, she did ask the do's don'ts and things like that. And like I said, we just advise her that Chris would tell her. But she covered all bases. Did absolutely everything. She didn't actually tell me that, Chris told me that because I had sleepover that night and he said, she laid with me, Ben, and she tickled my chest and stuff and stroke my hair and still kept kissing me.

I suppose the only sexual content he's probably been exposed to is probably pornography. And so he was asking me and saying, Is that normal? Does that happen and stuff afterwards? I thought she was just being nice or what and he went or she just wanted to go again! 

ZOE: Insatiable appetite. But you've hit on a really good point there. And another point about that being, yes, they might only access porn. So that's obviously a really distorted view of reality. But as we say, in a lot of our training, many disabled people, the only touch they have is with a pair of plastic rubber gloves, from medical point of view, and that is their touch, they don't get any sensual touch or stroking or massaging.

That's awful, isn't it, just to not have that, because we all know how beneficial that is for stress and connection. 

BEN: Yeah, I used to do his hands and his tendons and his feet and stuff, but it was certainly not received the same way.

JENNIE: I think it covers a lot of bases. One, it shows that how sex education just isn't inclusive enough, because lots of disabled people are not understanding what it actually means. And we know that through sex education, you're not taught about pleasure, so we're not actually taught because they don't want to encourage sex from young people, but not understanding it's meant to be pleasurable, so it's all the things that you shouldn't do. And then we kind of joke about porn, but actually, all we also know in most care settings, porn is you can't even get to porn because there's a child lock, so you can't even access that.

So there are so many people who don't have any access to any information at all about what good, healthy sex life is actually meant to be and what that looks like, which is incredibly damaging. And like hearing you just say that and seeing you well up, it makes me feel the same, because this is the whole reason why we do what we do and we run the training that we do.

And we talked about how Chris felt afterwards to a point. How did your friend feel about it? Because that's a big deal for her as well, sleeping with someone that she doesn't know that well. 

BEN: No, absolutely not. She found it very meaningful and not but like you say, she wasn't accepting any trophies. It was purel y that she's got a very kind heart and it was just something that meant a lot to her, that she could do that for Chris and tick that box for him.

We'd kind of done everything else. We'd taken him to the space centre, we'd dipped his feet in the water, we'd taken him on fairground rides and everything else.

That was the last thing, really, that we'd got him drunk and when he was old enough, you know, we giggled and laughed and did all of them, you know, it was just important. I don't think anyone should be deprived of that.

JENNIE: Is Chris still alive Ben? 

BEN: He is, yeah. 

JENNIE: And does he still talk about that? Because I think that the thing that with lots of people certainly that we've worked with and know, say they use a sex worker, that it's a great experience but then it kind of leaves you bit thirsty for more. Where'd you go with that? Are you looking so does he still talk about it? Is he in a relationship now? Where is he with things?

BEN: I don't actually know. I don't care for Chris anymore, unfortunately and I do miss him. The money from the government ran out and they weren't looking to continue it and I'm fairly confident that you guys will know that the system can be quite a battle and is massively flawed in loads of areas.

It was very sad. I do still see him when I can but it is different now. I'm not consciously going to give up sleepless nights when I'm also trying to run a business and do it for nothing. I did for a little while but it wasn't sustainable, I couldn't keep it up.  

ZOE: But doesn't that make you realise how important that is, that you were in his life for, let's say five, six years and you were able to give him those experiences? That was luck of the draw of having a really nice guy come in and look after you. Oh. Who also had really empathetic friends who were able to support and unfortunately, as good as some carers will be, they'll never even look at that. And so you don't know what he's up to now. He could either be just having his Mum's care or a carer that's never going to facilitate that.

So it's so important and so lovely that you managed to do that at that time, because people like you are gems when they come into your life. I have live in care. And, you know, you've had a few special ones that have done things for you or changed your perception on stuff, and you think, oh, my God, that's amazing, whereas other people, you go, okay, yeah, great.

You're allowing me my independence because you're caring for me, and we're going out here and there. But you really do meet some special people that will change your life.

Of course, yes. You don't want it to be sycophantic and going, oh my God, this person's amazing, but we all have that in our life, disabled or not, where you meet someone, you go, oh my God, I'm so glad we met, you did this for me or you changed my mind.

I think it's hugely important. And that's why we're so passionate about getting the message out there with our training and just a whole campaign, really, because there are a lot of carers that won't do that. And they'll also think that they don't have to do that. Whether that be from a religious or a cultural viewpoint might be like, oh God, no, I would never facilitate that.

Where does that leave the disabled person?

BEN: I don't see it as necessarily something that me that any carer has to do. I think it's either important to you because of the kind of person you are and it's within your nature and character that you see beyond the helping to get dressed, putting trousers, socks on, helping get in and out of bed. There is more to it than that to help them feel like they're living.

JENNIE: Yeah, I think my argument would be that actually, I think if you're working with human beings in care settings, as a carer, you do have to be going in with open eyes and looking at somebody as a whole and as a human. And there's very few people that we meet in this world that choose to be completely celibate, that choose to live on their own, isolated and sleeping in a single bed and don't have any intimacy at all.

Most of those, or a lot of people who are living like that, for example, are nuns or monks who are choosing as a sacrifice to do that. So the fact that so many people are in care that are living like that, but that's just a given, I think that's quite questionable.

So it's kind of retraining carers minds of kind of going, yes, we need to do all those things. And if we're not comfortable with that situation. We need to go and find somebody who is comfortable like you having those conversations, and we put it into people's care plans.

BEN: I guess that you just kind of hit on something that I'm a huge advocate for, of finding the right fit for somebody. So within my business, my main objective being in charge of recruitment and HR is ensuring that the people, the candidates that we have in are the right fit for our existing team because that goes a long way. And also my management team can work with personality and they can't work with somebody that comes into the business and has a flawless skill set, but a bad attitude and bad timekeeping and doesn't get on with people, or chomp when they eat and sat in the van at lunchtime or something as dark as that. Because you spend a lot of time, it's very, very similar situation.

You spend a lot of time with that person. It is crucial that you are the right fit for each other for that to work, because otherwise it can just become like a robotic chore and you're just doing it. And that's not right. That's not something that has ever kind of sat comfortably with me. I think it's important that your personality is a big part of you and it is a big part of your makeup.

It's important that you do have that connection with people.

ZOE: Definitely about connection. I've always said so. I've had living care for like, 15 years, 17 years or something, and I've always said, of course, everyone that comes in is a carer and they will do the care job and they'll do what's on the plan.

But then you've got the people that care and there's such a distinct marker there, the way you go, oh, I know you're someone that actually cares. You care about me, you want to do the best for me, you're interested in me, you think of solutions for me, whereas other people are just waiting to be instructed and so they're never going to think out of the box or push me, or suggest ideas. And it's huge. It definitely is huge, what you're bringing to that job. 

JENNIE: But I think you're right. I mean, it's the person centre planning, that's what it comes down to, right? And it's a bit of a boring term that we throw around and was like, what does that actually mean?

But it's about looking at a person, at a whole, and the person that's caring as well. But it's got to be what's right for you. And I supported somebody many years ago to use a sex worker. We actually went to Amsterdam. It was his 30th birthday, and there was a group of us who went over, and it was actually really difficult because we went to all the windows in Amsterdam and a lot of the sex workers in the windows rejected him because they could see that he had cerebral palsy and that he was a wheelchair user and got quite a severe disability and very poor dexterity, speech impairment. And you could see these really unattractive men kind of going in, dare I say? And then there was him, that was a good looking 30 year old that wasn't being accepted.

And eventually we met somebody and she was lovely, she was actually a nurse and also a sex worker. And like you went to the pub, I waited outside and afterwards...

BEN: It seems like everyone just goes to the pub when it happens?

JENNIE: I didn't really know what to do so I was like, oh, I don't know. So I just waited outside. I sat in his wheelchair, actually, and waited outside, and I went back in and helped get his catheter back on.

And I said, how was it and he said I don't think I did it properly. And I said, well, why? He said, well, it didn't happen straight away, which meant he didn't cum straight away. And I said, but that's not a bad thing. And it really made me realise that actually, he hadn't had any sex education. 

Going back to what we talked about before, he hadn't had anything to reference because everyone talked to him about football and about things that they thought they were being inclusive, but no one had talked to him about sex or what that actually looked like.

And he was happy that he ticked that box. But equally, when we got home, he felt very depressed about it because he was like, Where do I go with it now? And that's why I asked the question about Chris. And he's now in a relationship, but that took him quite a few years to be able to get the confidence to then, to meet someone. And he says now it was totally the right thing for him to do, to use a sex worker to experiment and explore. But again, it's very person centre plan. What was right for one person isn't going to be right for another person, is it? But it's about having these conversations with people.

That's what's important.

ZOE: I think that's useful, though, because I think a lot of people I mean, useful that you've said that, because I think a lot of people think, well, if I do it, it'll be great, and it is a massive noose off of someone's neck. I don't think that's a natural phrase, but
to tick that off and say, right, I've done it, is a huge psychological unblocking, and then can potentially allow someone to step forward and maybe look at the dating and stuff, because you haven't got the virgin label around your neck and you know that it's maybe possible. 

However, like you say it's, then, well, what do I do now? Because I'm not suddenly going to be accepted on a dating site because I still look maybe very physically disabled and people aren't going to go for that. The reality is, or, oh, God, have I got to pay for sex every time? Is that all I'm worth? And so you can see how that could actually be a really, like a negative cycle.

So it's a really difficult one to manage, isn't it? 

BEN:I mean, Chris went completely the opposite direction and he was just full of confidence then. 

ZOE: But what did that look like? How did that manifest? Did he chat to more people when he was out? Did he have more sex?

Did those opportunities come up? 

BEN: He certainly had more confidence, just socially. He had more confidence taking him places. I remember when, I very first started looking after him when he was 14, he didn't go out, he didn't go out into the public eye, he didn't want to be noticed, he wanted to shy away and be the one at the back of the room, and that in his electric wheelchair. And he wanted to be invisible and over time, gradually kind of brought him out. And he was roughly this well, he is roughly the same age as my brother. And on his own, go up the park at 16 and go and meet my brother at the park. And that was huge. That was massive for Chris to have the confidence to that and his confidence just constantly grew and I guess that's the biggest thing, really, that I can kind of take from that and to know that I certainly helped grow his confidence, in supporting him.

But, yeah, he wasn't the person at the back anymore after his sexual experience, he wasn't shying away. He found his voice even more. I think he actually ran into the ankles of the girl he fancied at college to get her attention to apologise and then hit on her. And I don't know what happened after that. 

JENNIE: I'm going to throw an active guess that it probably wasn't the one, but the best way running someone over, but may have worked.

BEN: I don't think he broke anything. Jen

ZOE: A little graze?

JENNIE: That is like taking it to the extreme of pulling pigtails, isn't it? Like running and breaking bones. Yeah, but I think just to kind of wrap it up and for the people that are listening, I think it's really important for us to say we are very conscious that Zoe and I are two women who have disabilities that affect us and can affect our sex lives, but in a very different way to what we're talking about and that we're talking from the other side of things, you and I Ben of, like, supporting people and Zoe rather than being that person. But we kind of want to know if you're listening and you are in a situation where you've considered using a sex worker or you feel that that's something that you want to do, that we're here, we certainly haven't got all the answers.

But what we do is we will listen and we will see you and we'll support you the best we can. And equally, if you've been in a situation, whether you're a parent, I mean, sounds like Chris's mum was brilliantly, supportive and it's very daunting. I have two daughters and I'm quite liberal, but I know when it comes to it and them talking about sex, as liberal as I tend to be, I'll still be a bit like I'm not ready for my babies to have sex. But it's very difficult for parents, so, again, if you are a parent or we're trying to support somebody, we're here to help you through that journey.

But we really appreciate you coming on and sharing this because it's a great story and it's a great thing of supporting someone. And I think more importantly than anything, you saw Chris, you listened to him, you had those conversations and you saw him and you validated him as a human being that wants to be sexually active and that. That in itself is a massive thing for so many disabled people.

So I really appreciate you taking your time out to come and talk to us about this, Ben. Thank you so much. 

BEN: You're very welcome. 

ZOE: Yeah, it's excellent to hear a really positive story, I would say. So obviously we run a love lounge where people can write in and possibly 80% of the letters that we get, or emails that we get are from people who are wanting this experience and saying, like, I'm not liked on Tinder, nobody comes and approaches me, how can I meet someone?

And it's really difficult and there has to be hope out there. And I find it really difficult sometimes responding to people because I'm thinking it's not easy. I went through my own challenges, through my twenty's, I also felt very much the same and then something just clicked and then everything was okay.

But it's not always going to happen like that or people have to go on for a long, long time. So I think for people to hear this story is good people to know that actually there's no shame in working with a sex worker. And as you said, Jennie, parents, we probably have like, maybe 10/20 percent of letters coming in from parents saying, how can I help my son or daughter? And I think sex worker is a really difficult topic for parents. 

One lad wrote to us and he said, I did discuss it with my Mum and she wasn't keen. Which is fine, and you can understand that about your vulnerable Son, but also, you think, okay, but look at your age. And if you weren't in a wheelchair or you weren't disabled and stuck at home, you'd be off sleeping with someone on a Friday night. Your Mum wouldn't even know.

BEN: So really, we just need to get the Mum out of the house is what you're saying?

JENNIE: On that note, thank you very much. Thank you very much and really enjoyed this chat. And to everyone that's listening, please write in if you need any support. 

ZOE: And our Love Lounge surgeries, they are done via zoom. And that's a, like 50 minutes chat with Jennie and myself. And, yeah, absolutely anybody sign up to that for free and then we can have a good, open, honest chat like we've had with you, Ben.

Thank you so much, Ben, for sharing the story with us and always good to see you.

BEN: You too.