The Way We Roll
A seriously funny take on life from the disability driven duo... Simon Minty and Phil Friend.
The Way We Roll
We Want Sex on a Bus!
This month we’re talking about sex and disability — a topic that’s often ignored or treated as taboo. Our guest is Jennie Williams, CEO of Enhance the UK, who’s been a leading voice in breaking down the barriers around intimacy and disability.
Jennie talks about what drew her to this work and shares insights from Undressing Disability and The Love Lounge — a space where disabled people can talk openly about sex, relationships and everything that comes with them. From communication and consent to pain, fatigue and body image, we explore what it really means to ask for what you need without embarrassment.
We also look at the bigger picture — how stigma, poor sex education and medical assumptions still get in the way, and what can be done to make things more inclusive.
As always, Simon and Phil share some of their own experiences — the funny, awkward and very real parts of love and sex when disability is involved. It’s an honest, practical and sometimes surprising conversation about pleasure, connection and the right to be seen as a sexual being. There’s even a discussion about sex on a bus.
Links:
Instagram Love Lounge
Sexuality and Disability website
Books
The Sexual Politics of Disability: Untold Desires Tom Shakespeare 1996
Announcer 0:10
This is The Way We Roll, presented by Simon Minty and Phil Friend. You can email us at minty and friend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn.
Simon Minty 0:29
Hello and welcome to The Way We Roll with me, Simon Minty and me, Phil Friend, this month, we will be talking about sex and disability.
Phil Friend 0:38
I know a little bit about this because I'm a father to four children.
Simon Minty 0:42
I know a little bit about this too, but someone who has explored this much more than us is our guest, Jenny Williams from enhance the UK. Hello, Jennie, hello.
Jennie Williams 0:53
I know a little bit about this too. So brilliant.
Phil Friend 0:57
That's brilliant. Good to know. Well, I guess we all know that sexuality, intimacy and disability are often stigmatized or neglected in disability conversations. But Jennie, could you tell us something about your own experiences with disability in relation to intimacy, desire and sexuality, and perhaps what some of the biggest challenges have been, and also what have been unexpected sources of joy and learning.
Jennie Williams 1:21
That's a big question, isn't it? Phil,
Phil Friend 1:25
Always start properly.
Jennie Williams 1:26
Well, absolutely, okay, so I think that there's many, there's many answers to that, that quite long question, and I might forget it halfway through, so you might have to remind me so historically, and I think this is still the case. Now, a lot of disabled people are hugely infantilized, and that still happens now. So my background was certainly working in care in care homes. I'm a disabled woman myself, and I'll speak about that in a minute, but professionally working in care homes. And in this country, we tend to have care plans. I'm guessing there'll probably be people from different countries listening. So care plans are when people's information written down, from their toiletry to toileting to eating, you know, all personal information. And if people are in care homes and they need additional care. Or even if they're in their homes and they have PAs their information is written down there, a carer comes in and looks at it. But historically and still now there is very little or no information in those care plans about people's sexual expression, sexual needs, even sometimes, if people have been married and, you know, you said, Oh, I know a little bit about this. I've had four children. Some people are in care homes, and that almost gets erased. They're not seen as sexual beings. You know, some people don't think, Oh, God, that person's never had sex. They're just a disabled person. So this, this kind of infantilization or need to look after. And when people think about disability, people normally go to straight away. In their minds, think very disabled person in a wheelchair, right? And of course, that can be the case. It's not to say that person doesn't also have sexual needs, but what people get really confused when we talk about disability. People don't really understand what disability is actually. So people feel very uncomfortable, and we go to safeguarding. Safeguarding is this word that people, oh, disabled people, can't have sex. We've got to safeguard. And I flip that back, what does that mean? Because normally that looks like the most restrictive option. So that means not allowing anyone to you know, we will like we all should be allowed to make mistakes. We should all be able to do walk of shame right in the morning, or go, oh my god, that was a terrible experience. What was I doing? Or we should be allowed to make those mistakes. Yes, there might need to be a bit of safeguarding, but you've got to look at what that really looks like, rather than just going absolutely no way that's not happening. And again, that's infantilizing and putting vulnerable, whacking that on all disabled people. And of course, some people are vulnerable, but some people aren't. So yeah, the story, and it's probably part of that question, Phil, that I've forgotten.
Phil Friend 4:19
No, no, that's that's good. Just clarify something for me. I think it's obvious, but I need to ask it. We're talking about care plans and care homes for older people. We're obviously not talking about children.
Jennie Williams 4:31
No, no, no, not all, like all people in care if you, if you're, if you're in a care home and and if you have care staff coming into your home, you will have a care plan, right? So there'll be your bet you so you know, for medication, and as I said, you know certain things, because obviously the consistency of having care isn't you don't have one carer. So there'll be shift changes and staff changes so your information, so it's very personal stuff that's in there.
Simon Minty 4:57
Sorry, you said children. Phil. Obviously not talking about children here. Well, I but not older people. I missed the children, but yeah,
Phil Friend 5:06
that was my clarification. I assumed that it was for old adults, but I do remember I worked as social worker myself, and I looked after kids in care. So it was children I was interested in, but teenagers, disabled teenagers, for example, that would be an interesting area from a care perspective, because you've got a legal issue around sexuality and sex, but you've also got issues about experimentation as a teenager, which, you know, we all did, so yeah, anyway, I digress a little bit, but that's helpful too.
Jennie Williams 5:37
You do and you do and you don't Phil actually, because that's a really important thing to highlight, again, the lack of sex education, inclusive sex education for young disabled people. That's, you know, that's huge. So actually, it might not be that, you know, even it's still important that if someone's having care and they're of that age, that you know, maybe somebody's talking about their sexuality or how they want to identify, or how they feel about their gender is still important stuff that we're, you know, that we're having down to share for people, you know, share for people, and people should be encouraged to talk about. But again, this kind of a lot of parents, particularly, don't want to have these conversations with their disabled child, to then have another layer of sexuality, God forbid, on top of that, it's really difficult for I understand it's difficult for parents, but it's really difficult for the disabled people.
Simon Minty 6:26
Yeah, yeah, you've made me think of something Jennie, and I'm taking this out the care setting, because I think this is generally disability. And I go to Little People of America, or they call it, and then the UK conventions, and some of the young men that come have never had any sexual experiences, and then they suddenly turn up to this stuff, and the women are like, stop being an idiot. You know, behave properly. And don't get me wrong, there's lots of smart and sensible and whatever, but I think part of that is they don't if we I can imagine, when I was growing up, I was never seen as dating material, so I never got to learn some of this stuff. So even out of the care home, do you what you work with everybody? It's not just care. People in care presumably,
Jennie Williams 7:13
absolutely not. Yeah. Well, exactly that, I know. Excuse me. I mean, the reason that I was kind of, and I'll come kind of loop back to that, Simon, the reason that I was kind of mentioning the care home side of things is that, really, that's where my journey started, you know, really noticing that people were in single beds and not double beds. You know, I haven't slept in single beds since I was a kid. You know, it instantly infantilizes you so and the lack of conversations, and that's when, that's how enhanced UK was born. That's where the undressing disability campaign came from. That because my eyes were, you know, wide open. And every time I tried to speak to any care settings, I was really, really shut down. And then, of course, we widened it. And we work with all disabled people. Probably the largest group of people that come through our love Lounge, which I'll explain in a minute, are probably neurodivergent men right now. But you're absolutely right. There are people that, again, because of the lack of education, and when I talk about sex education, I'm not necessarily talking about penis goes in vagina. You know, because a lot of sex education at schools. You're not allowed to talk about pleasure. I understand that because, again, that's that safeguarding. You've got to talk about practicalities right within sex education. But sex education, to me, is a lot wider than that. It's about behavior. It's about, you know, how you talk to somebody, how you see yourself, confidence, all of those things that come in. So if you are taken out of sex education, if you're in like a specialist school, or your parents don't agree to or if you're homeschooled or whatever, you don't get access to any of that you don't get online. There are so many, again, care homes and people at home that have child locks on their internet so they're not able to access a lot of this information. A lot of us learn stuff from our mates, you know, going chat, chat, chat, chat. But if our mates haven't been, you know, get out and snogging boys or girls or doing whatever. You have got no one to learn from. So then that goes into adulthood, and then that goes into essentially inappropriate behavior. And where do you learn?
Simon Minty 9:21
And you made me think again. I can never say this word. You've said it four times. So is infantilization. Thank you. I can't say it properly. Whether that's part of the I've always assumed it's more asexual. They're just assuming I'll treat you as an adult, but sex is just not part of it because you've got a disability, but you're saying there's maybe in another layer, it's actually childlike, or, I don't know, am I being a bit naive just thinking it's asexual? I
Jennie Williams 9:53
don't think it's asexual. I mean, I mean, I suppose, and asexual is comes with complications in itself, just because. You're asexual doesn't mean you don't want to be in relationships. It doesn't mean you don't want intimacy. You know, people who are asexual, which is a whole nother conversation in itself. You know, present in different ways. But even you know, again, I mean, I've worked in many care homes. I've heard this many times. You know, two people might be holding hands, and a carer will go, oh, oh, don't want to get in trouble. You two, do you? You know all that stuff, and it's just what I'm holding hands with. So you wouldn't do that to a grown up. You wouldn't do that to anyone else. So in my you'd only do that to a child, and even if, to be honest with you, even if I did that to my six year old or eight year old, now they'd be like, what you're talking about. That's embarrassing.
Simon Minty 10:42
I totally get you. Now, if I my asexual is my, probably my understanding, but this is where someone is not seen as a sexual being. It's not someone's choice, it's someone's put on them. But you're bang on that bit the moment, there's that intimacy bit. And I have been in places like that and they, which is a bit like teenage stuff, but these are adults doing it to other adults. I get it
Jennie Williams 11:00
absolutely now, I wouldn't even say it's teenagers. It's younger, that it's, you know, primary school stuff, you know, and no kissing allowed. Of course, you're not allowed to do that at school, because you're at school and you're at primary school or whatever. But you know, in care settings, let's inappropriate behavior. Well, what's inappropriate is it inappropriate? And I think that with a lot of the time you know carers or any or you know or parents, you have this air of authority, right if somebody is reliant on you. And again, at the moment, I am talking about people who need additional care. That obviously slips in, as I said to all disabled people, because unlike you know, we'll talk about who comes to love lounge in a minute, but that's where it that's where so many problems lay, and that's when people get scared of it. Because obviously people get scared of the legalities as well, because people don't understand the law. Care staff have not had any training in this. So, you know, we wrote an accredited training day to actually teach carers, teach managers, teach healthcare professionals, how you have these conversations, what the law says, what we should be doing, how we encourage people to be able to have these conversations with us. And I'm not just talking about sex per se. I'm talking about everything that comes with that. And what I will say on the back of that is that a lot of us, when we talk about sex, we bring our values to the table. You know, sex is between man and woman, two people who are married, you know, people who really love each other. It's the kind of stuff that you say, maybe to kids, but I don't say that to my kids. I have to say, but, you know, but a lot of people do. And therefore, when you're a carer, or you're in some kind of authority, again, you'll put that on someone. We teach people you have to work with facts, and none of those are facts. They're values. And actually it sounds very basic, it's very simple, but if that's been integrated into your whole life from very young age yourself, it's quite hard to let go. And people are scared because they've had no one talk about this. And I feel for care staff, if they're told suddenly, right, you've got to go and assist somebody with a sex toy, say, or you've got to go and assist somebody going out on a date, and they want to, they want to be intimate with each other, and you've had no training on that as a care staff you go, Well, wait a minute. No, only get paid 10 pound 50 an hour. No, I'm not going to do that. So I understand that too.
Phil Friend 13:33
Can I just ask Jennie, just to reel back a slightly? So there you are in the care settings, doing your thing, and you're discovering and coming across this, and thinking, hang on a minute. This isn't right. This isn't right. There's something wrong here. You then move from that to them developing care training programs for care staff. I'm kind of missing the bit in the middle. How did you go about saying, hang on, there's something here I can develop and and what made you do that? You know what kind of inspired you to I can see some way in which I can help people now, both professional staff as well as obviously disabled people themselves. Can you fill me in a bit on how you move from spotting the problem to come out with ideas about solving it?
Jennie Williams 14:17
Yeah. So good question. So I think I was when I was working for a large disability charity at the time, when I was seeing this, I kept going and speaking to them, and I, quite literally, the managers are told, don't speak to Jennie Williams about this full name used. And I was like, you know, and I set up, there's a, there's a company called spokespeople, and they looked at, and I really, like, you know, I've met Steve and Mel, and I knew that they did some work, and I was trying to bring them in to do some work in the care homes, to look at, you know, potentially set up Anne Summers parties, that kind of thing. Again, it kept getting stopped, you know. And so. I thought, right? I can't work like this and on the same time as well. I have to say, as a disabled woman myself, so I've got four hidden disabilities. My headlining disability, if you like, for this conversation, is, I'm hearing aid use. I've got bilateral hearing loss in both ears. My dad's profoundly deaf, and things weren't accessible to me, right? So films were being shown. This was, I've got go say. This is, I'm going back like 18 years ago. The films were being shown. Meetings were happening. I couldn't keep up with anything that was going on. There were no no subtitles. People weren't allowing me time to lip read, you know. So I found was finding it really difficult anyway. So I left and I thought, I want to do something about this, but I don't know how. And I started talking and looking to see if I could get funding to run, you know, run something to support people going out on dates. Maybe I didn't really know where I was going to start to be completely honest with you. And then I soon realized that I was never going to get any money for anything to do with sex and disability like no way. And actually, that was fortuitous in many ways, because I set, I set the charity up more as a social enterprise. So this is kind of important to know. So we run general disability awareness training, and we run access audits, BSL courses. I mean, we're pretty much a one stop shop, really, around disability to to train non disabled people. And why that's important. Is Simon, I'm sure you've experienced this before. You know, it's all very well us, you know, educating and inverted commas, disabled people to be able to go out on dates and, you know, live life. But if you're not parallel educating non disabled people. How do these disabled people access anything? How do they go to these restaurants without being looked at or mimic, you know, mocked, or, you know, or physically being able to get the access? So we run this training, and then the money that we make from that goes into the campaign called undressing disability. So, and this has taken many years, Phil is answering your question to set this up to be taken seriously, because I can tell you now I was not taken seriously for many, many, many years. Now we are. We're at that position now healthcare professionals do listen. You know we, we do. We do train doctors, nurses, etc, etc, etc. But one of the most successful things that we have is something called, and I've mentioned it a few times. It's called the Love Lounge, and it is basically free service. So that's really important thing to say as well. The money that we make from enhance is it's allowing all this information disabled people to access it for free, because counseling, particularly, is really elitist, and not everybody needs psychosexual therapy. So it's free, three free sessions, so people can come on Zoom. They meet with myself and my colleague, Zoe, who is a wheelchair user and has been I've known Zoe all my life. She became a wheelchair user when she was 19 years old. She's full time care now and then, we have lots of people on our panel who were physiotherapists, psychotherapists, OTs, etc, etc. And people can come and a lot of the time, as I said, the main people that come through are men from the age of 25 up to about 65 who a range of different disabilities, but at the moment, mainly neurodivergent man who are very lonely, very isolated, had that lack of sexual education, you know, when it comes to experience. So they might know, penis goes in vagina, or whatever it is, you know, the practicalities of sex, but all the nuances that come with flirting, talking to people, etc, is very isolating. And they're, you know, we have suicidal people coming through. We really do and and then we're able to spend a lot of time working with them and signposting people to finding local groups around or clubs or whatever it looks like for them. But sometimes people just want to be heard and seen and go, I'm not making a big deal out of this. You know, loneliness is very real. It's a big killer.
Simon Minty 19:04
There's you're reminding me, and I'm not gonna go into it too far, because I don't understand it. But I love the fact that these people who the lonely, the isolation that they're feeling if you don't do what you do there, that can get really bad, either, as you say, that people taking their own lives, or they can be angry, very difficult people as well. So it's a fabulous intervention at that point. I mean, how do people find out about you? Do you going to capture that sort of information?
Jennie Williams 19:32
I contact you, and I go, Simon, can I come on your podcast so we can talk about it? So we, you know, it really is. It's, you know. So, you know, I'm going to Dublin next week to go and work it, you know, talk at a big conference in Dublin. We, you know, we work with Help for Heroes. We work with, you know, organizations, you know, we, we talk about it. We've got flyers I'm going to hold up if this does go on the internet at all. So there's flyers that we've got. Lot that we we hang up in lots of Doctor surgeries, hospitals, Stoke Mandeville Hospital, which is one of the biggest spinal units in the UK, we've got a nice working relationship with them, you know, because, again, lots of people who have spinal injuries, they're looking at the physicality of for men, particularly if they've had an injury, can we get the sperm out of you? Because do you want a baby? Potentially, we can freeze it. But not about you know that one of the first two things that people say after they've had a spinal injury is, am I going to walk again? Am I going to be able to have sex again?
Simon Minty 20:36
You've alluded to it already in one of our questions, very specifically around intersectionality and diversity, and it's very broad now the world disability, but also what you're doing. So where do things like race or sexual orientation, you've mentioned neuro divergence, it could be religion. Where do these all come in? Do you meet a whole range of people and talk about the whole the breadth of this.
Jennie Williams 21:04
I mean specifically what we are, you know, what we are doing is supporting inverted commas, disabled people. But obviously you don't just turn up and go, right? That's the only thing that's going on in my
Simon Minty 21:13
life. These disabled people will have all these other things going on as well. That's what we mean.
Jennie Williams 21:18
Yeah, no, but exactly that. Sorry. So very naturally, those conversations will happen. So quite often we have couples come on, and one couple is non disabled, the other couple is disabled, or somebody is really from a different you know, religion really trying to strike. The family is struggling that they've chosen to be with a disabled person, man quite often, for example. So, you know, we were working with somebody the other day. They were both on the back of motorbike. They had a crash. He is now, I mean, they were only together for about six months, and when this happened, he's now a full time wheelchair user. Spinal Injury, she walked away from it with no injury, so a lot of guilt there on her part. They are one of the coolest couple I've ever met, and they are trying. They're experimenting with lots of different things. And I'm going to throw this word out here that's a bit scary for a lot of people, but kink, the kink world, right? And a lot of people go, Oh, don't go, I don't understand it. It's really don't. It's really scary. And I've been learning so much over the last few years about the kink world. Is something that I've never really been into particularly but when we say kink is such a broad spectrum, and the reason that I marry the two together, and it's one of the most popular things of what we do, is because people think that sex and intimacy is about, it's spontaneous, you know. And you're ripping each other's clothes off, and it's all like, ah, yeah, you know. And all this passion most of us know, like, after a while when you're with someone, and especially if you've got kids, you're like, oh God, gotta put it in the diary for Monday night, you know, at seven o'clock, because we haven't done anything for about four months, right? It's not spontaneous. And I think a lot of people who have particularly physical disabilities really struggle with the fact that somebody might have to help me transfer, or maybe I've got a problem with my, you know, incontinence issues, or, you know, whatever it is. But with the kink world, you have to plan it. You have to talk about it. It's the same thing. You have to have safe words. Have got to be trust. You've got to plan things. There's equipment involved, there's there's a lot of dialog, and, you know, communication. And I'm not saying this flippantly. I'm really not. I've been doing this many years now, the people, the disabled people that I work with, with physical disabilities and not I honestly believe have some of the strongest sex lives, because the communication is there. It has to be there. If you've got a neurodivergent person who really struggles with skin, skin, touch or certain smells, for example, you have to be able to communicate that to your partner and talk those things through, because otherwise there's nothing there. Whereas a lot of you know, non disabled people, again, it's like, we should do it. I guess they have sex. It might be okay, but a lot of people have sex and it's painful for them. You know, they're doing it because they just think, oh, close your eyes. Think of England. Let's do the Tesco shopping.
Simon Minty 24:18
So are you saying we can learn a lot from I mean, I know disabled people who are part of the kink world, but you're I'm just trying to tell you, saying we can learn a lot from the kink world, because they have to have these conversations about understanding consent and preferences and all that stuff that is a really nice, transferable skill. I I'm not gonna slightly over share here, but I know once or twice, and someone will say, This is amazing, because you just are so straightforward and Frank. Don't get me wrong. I'm not always, and I get embarrassed and all those things. But sometimes it got to because otherwise it ain't gonna work. But I kind of think, well, that's normal, because otherwise it won't happen. So I guess I'm going back to my original point. It's. Kink world have got a way of communicating that this communication be really powerful. Everybody,
Jennie Williams 25:05
absolutely. I mean, we, we ran a panel last week, and we've run two on kink. They are by far the most popular. So every month we run a panel. We have two experts on or three sometimes, and then people can just join the talk. It's normally at seven o'clock on a Thursday. Once a month, we say, Bring cup of tea, whatever. And we again, we say, with this week, we had a psychosexual therapist who specializes in kink and a physiotherapist. And we have many, many people on the chat. People can speak if they want to, and they don't. And if they don't want to, they don't. But again, yes, it's about positioning. I mean, I had two visually impaired people on so I was having to do a lot of audio description and going, I don't know how to describe this, you know, but, you know, on pillows or wedges or ropes or things for touch. And if somebody finds, I don't know, again, I'll use skin, skin for an example. If somebody really struggles with that. Who's neurodivergent, being able to use other instruments that can be used in the kink world, to be able to not touch skin on skin, but still be touching, you know, so it's that. I mean, I'm learning constantly, learning about it. It really, it's really fascinating. And what, what you said about over, you know, over sharing. I think in my position, I mean, I will share this I had when I turned 40, I had an autoimmune condition hit me like a ton of bricks. I didn't know where it come from. It's called lichen sclerosus. Everyone said, you know, it was meant to be really rare. It's not rare. It's a it's a condition that affects women and in their vulva vagina area. And it's, there's not a lot of research, so people don't talk about it. So it was almost a joke that I set up a charities for my future self, because it massively then impacted my sex life pain. You know, I live in constant pain, even just sitting down now I'm in constant pain. So then, then that transfers to intimacy. So suddenly I found myself hugely having to practice what I preach, and let's be honest. We don't always be honest. We we're not always honest because we don't want to embarrass that other person when we're in bed with them and we're like, oh, I don't want to ruin it. I don't want to ruin it. I don't want to make them feel bad. I don't want, you know, so it's not always easy to do, right? You know? And we can say all these things, but, but let's face it, it's it's sex can be awkward at times. It can be messy, it can be awkward and but it's about knowing that and being able to have a partner you're not necessarily love. You don't. It's not always about love, but somebody that you trust, that you can say no, and what I will say, coming back to education, we talk about consent, you can only consent if you understand what you're consenting to. And if people don't have access to information about positions and all this, you know, somebody might say, oh, I want to do a reverse cowboy or whatever. I don't know positions out there you go, yeah, you don't know what it is. How can you consent to it? You know? So that's why education is is bigger than just penis in vagina.
Simon Minty 28:08
That is Deck of Anton & Decks favorite position, reverse cowboy. I remember he was interviewing, so that's what he said. I just remember, because I had to look it up afterwards. I've got the hat now, so I'm a bitty.
Phil Friend 28:24
I think what's, what's hitting me as you're talking is the and obviously, you know, I have my sex life, and I've been around a long time and all that kind of thing. And like you, the four kids have gone, and it's all sort of our what's, what's left now, it kind of moves us a bit on to the older age group like me, people of my age and so on. I don't mean me specifically, but the thing that you're saying to me that's really intriguing and interesting is the spontaneity bit, the idea that sex is spontaneous, and you do it when you feel like it, etc, with each other, but the thought that you have a plan that can become spontaneous in order for you both to have a good time. In a sense, it's really interesting, and I think it's something that I don't know. How you teach that. Do you know what I mean? We're we're brought up. You've touched on this too. Our upbringings are, whatever they are, and we were taught whatever we were taught in our culture, our religion, whatever it is, to behave in certain ways, sexually. And if we went against that, we got nailed. IE, if you were not, if you weren't straight, suddenly that was a major issue. I'm trying to put all this together and ask you a question, which is, how do you begin to address that is so complicated, particularly with people who've never really had a chance to talk about it. They've grown up not being able to discuss this at all.
Jennie Williams 29:52
It is a huge challenge, and sometimes that is when people need help, you know, and by help I'm. Mean whether it be whether it be counseling, and I'm going to bring the love lounge in again, that's why we have couples in that we can guide people to navigate people. And not everybody needs counseling. It's not that they've been through trauma, necessarily. They just don't know how to have those conversations, as you said. And there's a really great analogy. This is not mine. I can't remember where I saw it, so I can't even credit it, but it really makes sense to me. And he said, right, you know, it's like you're waiting you want to go to a party, and you're and you're waiting for the bus, and the bus isn't coming, and you're like, Well, no, I want to wait for the bus because that's how I'm going to get to the party. And everybody else is waiting, and they're like, no, do you know what? I'm going to walk, or I'm going to get an Uber, or I'm going to just run, or I'm going to go take my bike. You find other ways to get to the party. But actually, if you're still going well, I'm going to wait for the bus, because that's what I do. That's you waiting for that spontaneity of sex and actually going well, I just don't feel horny anymore. I've got no sex drive anymore. I just don't feel that way about them anymore. Have you tried other ways? And arguably, a lot of us don't because, but that passion, and you know, does die out. It does after a while, because life kicks in and and then we we question our own libido, and something might be happening. Hormones fluctuate, etc, etc. But again, when it comes into the link of kink and and disability, it really comes down to communicating really well with your partner or multiple partners, or somebody you've met for a one night, or whatever it is. But by saying, These are my boundaries, and this is a difference Phil that I've seen between people my age and older from, you know, 47 my age older or younger people, younger people are much better at talking about boundaries, much clearer about communicating what they want and they don't want. Older people aren't so much because we've still got that internalized shame and embarrassment when it comes to talking about these things. So the long winded answer is, you know, sometimes we need a little bit of help to be able to be guided, to guide it, to have these conversations.
Simon Minty 32:07
And in a nutshell, I mean, had this very specific question about the love lounge that is this sort of services confidential advice, and is it for couples, or is it for individuals?
Jennie Williams 32:22
Anyone is for couples. It's for individuals. Sometimes we have people in with their care, care staff, if they've got communication, communication needs. You know, we had, I mean, I'll tell you, it's kind of funny, so I'm happy. Obviously, I'm not disclosing any names or information. They're completely confidential. But we had a man on recently, and he had a had a massive stroke. He was, he was 38 he was at a football match. He got up to cheer, and he ended up having a huge stroke. And through that, he completely lost the ability to speak well. It was massive stroke. He had two young children, and sadly, his marriage, you know, they separated, and he's away from all his family now, and he's taught himself. He's got dysphasia, so you can hear a little bit with his speech, but he's done, you know, his speech is really good now, but he can't read anymore. And, I mean, he had a big job in the city as a director, you know, big time, and he can't read anymore, and he can't really write, and he can't tell the time. But he's finding all these ways. He's also dyslexic, which he believes has really helped him overcome a lot of these rewiring his brain. What he wanted to do was set up profile on hinge with dating app. So Zoe, Zoe and I honestly, probably one of the hardest things we did, had to help somebody through zoom, set up a dating app on hinge, but he was not able to read, write or tell or understand numbers. So it ended up taking us, I mean, hours, hours we went well over the hour session helping him sell that find software that he could use as voice recognition software that, you know, for and it was a huge challenge to us, but we were determined to help him do it, you know. So that's one example of many hurdles that we have through sometimes they're really practical things, but what we like to do is, like I said, people have three sessions. We're not We're not there as a it's not a counseling service. So we don't have governing bodies over us in the way that others do. So we can deep dive pretty quickly and ask questions pretty quickly that you wouldn't necessarily do if you're a counselor. But you also be able to give people homework, depending on what it is, research areas, as I said, you know, around and help people go to groups or clubs or, you know, whatever it is, but there's such an array of different people that come through our, you know, come through and through and use the service. Let me
Simon Minty 34:52
think the question, okay, so, and I don't know the solution to this, and I'm going to get angry as I ask the question, but I know it's a fact, and I'm reading. Just to see how you approach it. When people say, you know, maybe I'm not in a relationship. Oh, don't worry, there's plenty more fish in the sea. I go, I'm in a pond. I have a physical, visible disability. I'm in a pond. There is not a big sea of loads of fish, because it just doesn't work like that. I know there are into abled relationships. I've seen that, and that's the phrase, you know, non disabled, disabled person, but they're rare, and they're running massive social media hits because of and you've just alluded to something I hear a lot, where someone becomes disabled and then the relationship breaks down, which breaks my heart. And then there's the other bit, which I resisted for years, which was, I'm not going to date someone else who's short like me, because everyone go, oh, there you go. You found each other. I'm like, so how do you speak to people and anyone listening to go, hang on. I'm in a different relationship, and it works, and I'm a bit more mature and better about it. But how can you have those realistic chats? Because you can have the dating profile, but he'll be waiting for six months to get one here, and that might just so how do you have that? Which is, it can be hard to find that intimacy, that partner.
Jennie Williams 36:06
Well, you you know you're absolutely right, and you can't sugarcoat these things. And it's not just to be really clear. It wouldn't be us just setting somebody up on a breaking profile and go, there you go. You know, it's about having those, those very real conversations and saying. And I don't know if I can swear on here, but dating is a bit shitty. It's hard, whether you're disabled or not. It's hard, and it's about managing expectations. You know, we spent a lot of time managing those expectations, but sometimes what people come on and, you know, and talk to us, and what they think they want and what they actually want can be two different, two different things. Sometimes I wish there was an answer. I think we'd all be millionaires if we could answer that question. Simon, you know, but it's about a very individual, you know, we have to work with everybody, very individually, there's a lot of ableism that goes on within, as you said, within disabled people themselves, going, I don't want another deaf person. I don't want to go out with another deaf person. Because who would hear the doorbell ring, you know, I don't want to go out with another, you know, person restricted growth. Because, you know, for all that we people would look at us and you know, my friend who, she refers herself as having restricted growth. She always says, One, you know, is one of me. People look two of me. People really stare, three of us as a frenzy, you know. So she's always shied away. So we all have this. I think most of us have this. But again, it's stripping it back as much as we can, and saying, right, we have to try and take that ableism out of ourselves. And if it is about meeting somebody that we genuinely click with, and it's not about the physicality we genuinely like and click with, it really doesn't matter what other people say, because they're not living with us all the time, not suggesting you think that, but I think all of us, to a certain extent, Simon, think that, and particularly a lot of wheelchair users that I speak to that really struggle with being in relationships, and thought of it with another wheelchair
Simon Minty 38:05
user, and just to say I was the daft one, because then when I did date someone who was the same as me, oh my god, this is amazing, and I've been an idiot, and it was my own hang ups or the internalized ableism, I think that the tricky bit, which I imagine other disabled people have. I can have the best friendships with a million women, and I'm heterosexual, so I click with loads of people, but then you say, Oh no, I don't see you like that. And that's back to the I spoke to a friend about this recently, and she's very smart woman, and the line she said, which whacked me even at my age, was, it's a biological imperative. And basically what she's saying is, you'll never be in that because of your disability, and we're hardwired. She's an autistic person, so it might be an extra element with her, but she's saying we're hardwired. I get that when you're 20, and you might say, oh, biological, I'm thinking of babies, or I'm thinking of this, or whatever that completed disposition might be. When you're 50, it's slightly different because you're like, now, it's just about having a lovely time with someone, and it gets a little bit easier, but it's,
Jennie Williams 39:04
I think everybody feels like that. I don't think that's true. I mean, I've definitely not. I mean, I've seen evidence of that, and I've been doing this a long time. So I mean, there's going to be elements of people that do feel like that, of course, but I mean, I, I went online dating, and I recently met somebody about four months ago online, and he has ADHD, he's 50. He's always really struggled. And he actually only said to me a couple of days ago, you're the first person that's really tried to understand how my brain works. You know, don't get me wrong. He drives me mad sometimes, you know. And I'm sure I do him. I'm sure I do him too, but it's about trying to understand his behavior and for it to make sense to me and and I think that's the thing, isn't it? That we somebody, I think we get quite confused about what love is. Love and sexual attraction are two different. Things You know, and if somebody to me, you know, saying, Well, what's love? Actually, I think a lot of the time, it's not how I feel about that person, but it's how that person makes me feel about myself. But we forget that a lot of the time, and especially if you're a disabled person, it's that, do they like me? Am I worthy? Am I good enough? And what we spend a lot of time doing at the love Lounge is actually stripping that back, going right right now, we're not necessarily going to work on trying to set you up on hinge or whatever, because that's not right for you with this particular guy. He was, because that's he's done a lot of work on himself. But actually, we spend a lot of time working with people. And again, I don't know how comfortable people hear about, you know, the word masturbating, but some people aren't able to do that, right, because they physically aren't able to do that. And so that's a huge thing as well. We created a sex toy range called Quest, specifically looking at extra large buttons and remote controls, etc, etc, so people can use that because, again, it's very hard to get into an intimate sexual relationship with somebody if you don't understand how your body works, if you don't understand what pleasure means to you. So we have lots of conversations around that as well. I think
Phil Friend 41:16
I wonder, Jenny, if we could move forward now to what you I mean, you've talked about a number of things you've developed and are developing, the sex toys thing, the love lounge, the training, that sort of thing. You've obviously gained phenomenal insight into how this works. I don't mean you've got all the answers, but you certainly get a you've got a better understanding than I have about this whole area. What do you think the next moves should be, then, for you as an organization, you as a person, perhaps, but perhaps more about what, what needs to happen so that disabled people get a better deal than they've been getting in this particular area of our human existence.
Jennie Williams 42:00
Okay, so on a broader, you know, a broader spectrum, I think that we need more representation. Simon will know that only too well, like, you know, on the TV and media, etc, we need, and it's not just a tokenistic thing or somebody's disability is the main storyline, or whatever it's just part of so we need that representation from us as an organization. Being completely blunt about it, Phil, we need, we need the love lounge to be funded. We need it to be a much wider range. Ideally it would be, you know, there's lots of people on waiting lists for psychosexual therapy. They don't necessarily need it. They don't need it, but it's the only thing that's on offer. You know, so ideally, and this is what I'm really working so if there's anybody out there that knows they'd be interested in looking at funding the love lounge, because to me, it's so important. It's a free service. It's a free service for disabled people. So ideally that the NHS would look to have under or public health would look to fund it. So we're getting a student come in to work with us from a new New York University, actually, to look at help us get the stats together. Because I think that's what we need to do. More than ever. .Now we know there's a need for it. We know it works. We know people are accessing it. We need to prove it's worth we need to get the word out there for more people to use it. And yeah, and I hate it comes down to cold, hard money. Phil, But, sir, but it, but it does for us to allow this to be a free service to people. It does. And can I, can I just say one last thing on this? We had somebody that came through the other week, and he had, and he has, MS, and he'd been accepted onto the end of life scheme in, I can't remember where it is now, one of the countries that that we accept people onto. So I think of Norway or wherever, some, yeah, somewhere that and, and he'd been accepted onto that right? He's, he was only in his late 50s, and we had a conversation with him, and we said, Oh, are you doing this because you were in so much pain, and living with MS and it's got so bad, or are you doing this because you're lonely? And I don't necessarily think there are conversations that necessarily a psychosexual therapist would be having that wasn't all necessarily counselor, and he said straight out, I'm doing this because I'm so lonely, all I crave is a touch on the shoulder or a caress on the knee that's from somebody that cares about me, that's not putting on a glove and washing me and to me, that sums up how powerful and how needed the love Lounge is, because he needed the validation that he wasn't being ridiculous in this and that we saw him. We understood him, and we were working with him, and we've worked and we've done lots of little steps, and it's pretty powerful bit of work that we're doing with him. So yeah, that it's letting people know that we exist.
Phil Friend 45:13
So aside, I mean, that's big there's big stuff, and obviously, I hope somebody is listening to this, who's got a checkbook, they don't mind. There's an old fashioned way of paying things. But anyway, you get the idea any denominations. We don't care. But what about some of the ideas that you might be developing? I don't mean you give away trade secrets, of course, but you strike me as somebody who's always looking for some different kind of way of helping others. Do you have any thought? I mean, the love Lounge is a brilliant concept. I get that. And the sex toy, clearly, there's a big issue there. I remember meeting a woman who described it exactly as you have that she could not masturbate. She just could not reach her arthritis was so painful. What she wouldn't have given for something that would have helped her do that while she did reliant. I mean, you know, just not, not doing it at all. But what about the problems that you're identifying, and what plans there might be to help deal with that too? Because the love lounge strikes me as a brilliant approach to validating people and people coming along and discussing these things, but what else might be thinking about?
Jennie Williams 46:25
Well, I mean, to be honest with you, Phil, is it again? It's a whole education piece. And as I said, kind of at the beginning, it's about educating non disabled people to understand what disability is, and educating, you know, disabled people as well, to be able to understand their rights, but be able to understand and question things like going back to care plans. Can I see my care plan? What's in my care plan? Actually, I have a right to that. Actually, why is there a child lock on my care home? You know? Why can't I access the internet on certain things and actually educating health care professionals to understand how to have those questions. I know this is fear of repeating myself here, but I can't really for me, education and changing people's mindset has to be the key to this. And sadly, we are fighting against the tide here because things are going backwards when it comes to, you know, the Trump administration and things that are going on. And, you know, it's a really sad time for us, because we are peddling really hard to do this. Actually, the good thing about what's happening again with young people and social media, etc, is more and more people, particularly around neuro diversity, understanding that our brains are different. They're understanding what that is more and there's and it's less shameful, and there's less internalized ableism with a lot of younger people. And so they're, you know, fighting, fighting against this horrible terrain that's coming towards us. So I wish I had, I don't have a simple answer, Phil, but for me, it's to carry on running our training with organizations. Is carry on running our training with healthcare professionals, and carry on telling people the services you know that we provide and getting the word out there, really, that's what we need to keep doing.
Simon Minty 48:14
It's amazing how many buttons you press Jennie and I found myself getting angry is not the right word. There's something going on that's like, Oh, this is really frustrating. And I love the fact that you're doing the work that you're doing. And I'm kind of contention that we, you know, if you are in a care home, that we got something that will help you wipe your bum, but we haven't got anything that will help you masturbate, or we don't talk about that. I'm very struck, and we'll have to save it for another day when I look at social media, there is a huge amount of sexy disabled people, and I've got 1000s, 10s of, hundreds of 1000s of followers, and I want to speak to them, because I love what they're doing. I think it's amazing. I just want to make sure it isn't an artifice, and you can get that attention there, but are they still facing the rejection or the isolation, and you know, you get your love through likes, rather than actually something else. And I don't know, I hope, I really hope I'm wrong, but it's not quite when I think of basic needs, of eating, drinking, sleep, warmth, all that stuff, it's only one below those, I think. But whether it's stigma, whether it's weird, prudishness, whatever it is, for some reason, we haven't quite got it. So the work you're doing is getting it to be part of that conversation and relaxing exploring it.
Phil Friend 49:27
I think one thing that really hits me, Jenny about what you're doing, is it I my career in Disability Rights started with busses and buildings. Can I get in, get can I get on? Can I move around? Right? Really basic equality stuff. And then we got the 95 act, and that changed the landscape in terms of rights and various other things. What you're talking about is on a different level. You're talking about me as an individual now. And what I should expect from being on this planet, and whether I'm in a wheelchair or whatever I'm in, doesn't shouldn't make any difference. It will make a difference, because obviously it makes me see things differently. But I think what you're doing is seriously pioneering in a very different way from what we were pioneering all those years ago, and it feels that now is the right time. Even with Trump, you know, sometimes we can do things when adversity really is against us, we get much more creative. You know, if it was easy, we wouldn't need to create. Would we? If it was easy, you wouldn't have come up with these ideas. I get the sense that what we need to do is we need more of you. We need lots and lots of Jennie's all doing things in all sorts of parts of the world to get to this area, which has been so long not talked about at all. I never, I was at special school, I was in hospitals, or most of my adult and child life. I never, ever talked about this stuff, not to anybody now, I know it's different now, but what you're saying is, is it really? It is when they meet you, but maybe the care plan society. I don't know what I'm there's no question attached to
Jennie Williams 51:13
this. Nice and thank you and but going back to what both of you were saying, you know, it's so important that we collaborate. It's so important that we come together. And sadly, like a lot of the time, as charities and in third sector, a lot of organizations kind of work, tend to work quite in an isolated way, you know, for fear, for funding or whatever. And I've never been like that. And we don't get funding at all, by the way, like we self fund everything with the love lounge. But for me to grow is to work together, is to do things like this, is to have, you know, to have these conversations. And going back to what you said about social, social media, Simon, I think it's really interesting, because when you're in the world and you're on Instagram, for example, and you follow lots of disabled people, you're like but there's loads of people, disabled people out there, they're all sexy. And out there, you only see that if you're following or you're in that world, if you're not following those people in that world, you don't see it. And there are many of those disabled people who aren't really confident. And I know that because we have lots of influences come to us and come through our land, you know. So it's not to say that their people aren't body positive and sex positive, absolutely, but it doesn't not come with those huge and abuse as well. So I think that it is about giving ourselves permission that we're not always going to feel sexy, amazing, wonderful. You know, that's unrealistic, whether you've got a disability or not, but it's not a shameful thing to speak about, or it's not an extra that you don't really deserve because you've got a disability and you've got you need help with other things, the life would be pretty awful for most people if they didn't have intimacy, love, you know, affection in their lives. And for a lot of people, you know, some people choose that. Some people don't. But the last thing I'll say on this is people who are, you know, monks or pre or they choose to abstain as a sacrifice to their God, right? A lot of disabled people don't get that choice. It's taken away from them. But that's not seen as a sacrifice. That's a single given, because you're disabled, why would you do that? Yeah, there are people giving that up in their lives because they're choosing to. Is it, you know? Is it? So I think that's how we need to see that. I go, that's a pretty big thing to give up and ask that question back to non disabled people. Would you be happy to do
Simon Minty 53:34
that? I will, and I'm now, I'm listening to Phil, and I blame him in many ways, because if you said to me, do you want to go on a bus, or do you want to have sex? I know which one I choose, and you can, you can hang
Phil Friend 53:46
on, Simon, hang on. What we've now got with Jennie is the potential for having sex on the bus. Okay, right? This is what we're talking about here. Look, we're going to have to end this conversation before it gets completely Well, we haven't got the time. Jennie, I this has been really interesting. And more than that, it's been very educative for me. I mean, I don't think I've had this kind of conversation with anybody like you've ever actually come to think of it. We skirt around it. I know about organizations that have tried this. I famously remember an organization in the 70s where you could go and have sex, which was all a bit illegal, I think, but, but nonetheless, this is such an important area, and one that's been so ignored for so long. So thank you so much for giving us your time and and for sharing your thoughts with us, because I think it's brilliant. I hope our listeners do too.
Jennie Williams 54:36
Thank you. Thank you so much for having me on, honestly, just being able to have a platform to be able to talk about it, and if your listeners are out there, you know, come and come and find us. Use the Love Lounge. Go on to the website. Enhance the UK. You'll see the the Undressing Disability tab. And there are, you can click on that, and you can click on to book yourself a surgery. And they're and they're free. Thank you very much, guys
Simon Minty 54:59
Thanks, Jenny, t
Announcer 55:04
This is The Way We Roll, presented by Simon Minty and Phil Friend. You can email us at mintyandfriend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn. You you.
Transcribed by https://otter.ai