by Nanette Ashby
In this episode I am joined by Jennie Williams, the founder and CEO of the charity Enhance the UK. It was a pleasure to talk to Jennie about disability, sex and accessibility. I was eager to ask her about the origins of the charity, the trainings they offer and their campaign Undressing Disability. I especially wanted Jennie to join the podcast to describe what barriers disabled people face when dating, having sex and accessing sexual health care. We explore how the experience of dating can be different depending on weather your disability is visible or not. Jennie and I also dismantle common misconceptions about disabled people such as them not wanting to have sex. Or them having been born with their impairments. However that is not true! Jennie illustrates what Infantilization of disabled people can look like and why it is such a huge problem. We share how we both deal with disclosing our disabilities differently and the challenges of advocating for yourself, especially in a healthcare setting. Jennie explains what damaging consequences the absence of inclusive sex education has on the development of a disabled persons life. The main takeaway of our conversation is: Education is key! If you are curious about why disabled people can have a better sex life and stronger relationships than most, stay tuned!
Please let us know your thoughts over on our instagram page @raffia_magazine // https://www.instagram.com/raffia_magazine/
If you like this episode please leave us a rating and review on Spotify- It is really appreciated! https://open.spotify.com/show/60ROIuvNmpqYrAYDOVLp8Y
You can find Enhace the UK here: https://enhancetheuk.org/
Undressing Disability Campaign: https://enhancetheuk.org/about-the-undressing-disability-campaign/
The Love Lounge: https://enhancetheuk.org/about-the-love-lounge/
Undressing Disability Podcast: https://open.spotify.com/show/39jhHzTvZ2IOwhRp6Ah43W
Check out their work on Instagram: https://www.instagram.com/enhancetheuk/ and https://www.instagram.com/undressingdisability/
Episode Transcript:
Jennie Williams
Do you have any access requirements? It’s not a hard question.
Nanette Ashby
Welcome to the Gender and Diversity Podcast Culturally Curious where arts and culturehave never been more titilating with me your host Nanette Ashby. In this episode I am joined by Jennie Williams, the founder and CEO of the charity Enhance the UK run by disabled people based in Great Britain. It was a pleasure to talk to Jennie about disability, sex and accessibility. I was eager to ask her about the origins of the charity, the trainings they offer and their campaign Undressing Disability. I especially wanted Jennie to join the podcast to describe what barriers disabled people face when dating, having sex and accessing sexual health care. We explore how the experience of dating can be different depending on weather your disability is visible or not. Jennie and I also dismantle common misconceptions about disabled people
such as them not wanting to have sex. Or them having been born with their impairments. However that is not true! Did you know that only 5% of disabled people are wheelchair users? Jennie illustrates what Infantilization of disabled people can look like and why it is such a huge problem. We share how we both deal with disclosing our disabilities differently and the challenges of advocating for yourself, especially in a healthcare setting. Jennie explains what damaging consequences the absence of inclusive sex education has on the development of a disabled persons life. The main takeaway of our conversation is: Education is key! Find out what role James Bond plays in representing disabled people in the media. And finally, If you are curious about why disabled people can have a better sex life and stronger relationships than most, stay tuned!
A transcript of our conversation and links to everything mentioned during this episode are in the show notes over on our website http://www.raffia-magazine.com Please let us know what you think of this weeks installment of Culturally Curious over on our instagram page which is @raffia underscore magazine. If you enjoy the podcast please leave us a rating and review over on iTunes and Spotify. Now without further a do – here is Jennie Williams!
Jennie Williams
Thank you. Hi. Thank you. Thank you for having me. So, hello, everyone! My name is Jenny Williams and I’m the CEO of Enhanced UK and founder.
Nanette Ashby
How did Enhanced UK come to be?
Jennie Williams
How did it come about? Okay, it’s quite a long story, but I try and make it really short. For years, I’ve worked in care settings, worked as a carer, worked as project worker. When you’re supporting people in care, normally people have and they’re living in care, they have a care plan. And in their care plan there’s all the information about someone to their health needs or, you know, what they like to eat, et cetera, et cetera, their whole life, really. But what is always missing when I saw in these care plans was anything to do with people’s sexual needs. And I just never was able to really understand that. And then when I was trying to breach these conversations and have these conversations with the people I was supporting and my managers, I was getting very shut down and I got really disillusioned by it all. And then I was working for a large charity and I got made redundant. Previous to that, I had these ideas that I wanted to set up a charity and I was slowly but surely doing things in my spare time while I was working. And then when I got made redundant, I thought, right, okay, now it’s time to really jump and jump into it.
But as you can imagine, no one wants to fund anything to do with sex and disability. You can barely get any money for sex. You can barely get any money for disability anyway. I thought, okay, you know what? We’ll make our own money. We’ll kind of set it up a bit like a social enterprise. So, we started running training, general disability awareness training around how to communicate with a disabled person. If you’re an employer, they’re very much aimed at nondisabled people. It was the best thing that we could have done because the two go hand in hand really well, because there’s no point empowering lots of disabled people to go out, be sexual, go on dates, go to gigs, and then everywhere else go, oh my God, we’re not accessible. We don’t know how to actually support disabled people coming in. It works really, really well. And it works well because we’re not reliant on any funding, we’re not relying on having to bend ourselves accordingly. We can be really free and say and do what we like, which I love and my team really loves. They can say vagina as much as they want and vulvar, and no one’s telling them off, certainly not me.
So we kind of spit the charity in two ways. We’ve got the business side, the training. We run general disability awareness accredited sign language training, and we’ve just written, as far as we know, one of the only accredited training courses in the country aimed at carers how to support people around their sexual needs. And then you’ve got the Undressing Disability Campaign, which is looking at everything, really, as much as we can to do with supporting people’s sexual needs. I’m really saying the whole time, we are not pretending to be the experts in this, but what we’re doing is joining up people with the experts, with therapists, with OTs, whoever it is, looking at sex toys and actually creating our own sex toy range, which is going to come out in the next few months.
Nanette Ashby
That’s cool!
Jennie Williams
We’ve been working on it for a really long time and it’s taken years to come out because you think could be so hard about that, but it’s really hard. And things get sent over from the factory in China. We think it’s great, and then we get it user tested, and then somebody who was poor -dexterity says, actually, I can’t quite risk that. That’s okay, we start again then. It’s taking a really long time. That’s kind of how and why it’s just kind of growing.
Nanette Ashby
Yeah. What are the most common misconceptions about disabled people you run into? And you talked a little bit about what the consequences of that can have on the disabled person, but also maybe on their family or people around them as well.
Jennie Williams
I think there are a few, I think people other, you know, nondisabled people, other disabled people. So it’s like, oh, you know, that’s something people were born with. It doesn’t happen to us. And actually, most disabled people are not born. I think it’s 85% of disabled people acquire their disability. Very few are born with only 5% of disabled people being wheelchair users. Really tiny amount. I’m really one for stats, but I think it’s quite interesting when you look at that. So we call nondisabled people they’re not yet disabled because we kind of say, even if you’re old, it probably won’t (hopefully) happen for you until you’re older. The reality is our bodies change, they get less able, even if you’re a selfish, absolute selfish git, to prove it for yourself. And just think, when I can’t walk as well or see as well, or hear as well, or do as well, then actually these are things I wouldn’t want to be put in place. I think this misconception that it doesn’t really happen to us, and certainly when it comes to the undressing side, it’s a disabled people don’t have sex.
Nanette Ashby
Oh, yeah.
Jennie Williams
They’re not sexual in any way. Or if they do have sex, it’s about hiring out a sex worker. And of course, it’s a place like some people want to do that, but I get regularly contacted by journalists, and my go-to is always- how often do you use sex workers or your friends or you speak about? Never! Okay, well, why is this assumption that every disciple person wants to use sex workers that yeah, it’s boring. It’s a really boring narrative.
Nanette Ashby
Yeah, that’s so true. Something I’ve come across a lot. If you want to start dating and you have, for example, a visible impairment then the assumption is, well, can you even have sex? Is that even a part of the relationship that could exist? How do you approach that subject? Let’s say you’ve been on a few dates, you’re attracted to each other. How do you brush that subject without being like, oh, can you even have sex? Which is quite insulting and not nice. Do you have any tips on how to start that conversation?
Jennie Williams
I think good intent always actually goes a really long way because we can always say things and you can tell quite quickly whether someone’s trying to be insulting, trying to be patronizing or genuinely really wants to know. We’re all really individual and obviously, we’re all individual and it’s really difficult to give kind of blanket advice. But I just think communication is the key to having good sex.
Communication is the key to having a good relationship. So as long as you can see that that person is coming with good intent, or you as the person asking it with good intent, or I say is due to your disability, sex of a pain for you? Are there things, or positions that you enjoy more than you don’t enjoy? Even if someone came to me and said that, the fact that they were even thinking that would give me then the confidence to say, actually, penetrative sex meat is very difficult. It can be exceptionally painful if I can do it at all. Thanks for asking! And these are things that I really like – do you want to see my whole drawful of toys? I think I truly believe this, that people who have impairments have disabilities actually have way better sex life.
Nanette Ashby
Yeah, I’ve heard that!
Jennie Williams
Because you’re forced to talk, communicate, have a giggle and it can be a really liberating experience. So I think it can be kind of a blessing if you choose to look at it like that. Not all the time they can be.
Nanette Ashby
Especially because you’re forced to communicate, you have to talk about it a little bit more. What are some day-to-day barriers disabled people face who want to have an active sex life? As you mentioned before, going to gigs or going out and meeting people. What are some of the things non disabled people might not think about immediately?
Jennie Williams
I think, yeah, again, obviously disability is a massively broad range, isn’t it? So you’ve got from people who have a severe communication impairment, who are very cognitively able but want to adjust the practicalities of having a conversation. Or not having a dexterity to be able to type or go on Tinder or whatever, and then you’ve got all those issues of the dating world which are brutal. Swipe, swipe, swipe. Do I disclose my disability? Do I not? Do I say if I’m a wheelchair user, do I not? Do I show my hearing aid? Do I not show my guide dog? All of these things are very obvious but we kind of use a filter, you can quite easily filter such people out which can be very brutal.
Then you can also have hidden impairments, all my impairments are hidden. I actually met my partner online and that comes with problems itself. You have to sit down and do the whole disclosing thing. But I think dating in general can be embarrassing as well.
Nanette Ashby
Yeah, that’s true! And especially I guess if you’re not visibly impaired, you have more time to see if the person is actually worth your time and energy. Otherwise, you can’t really avoid the conversation.
Jennie Williams
No. And that is really difficult. And then, like you say, you’ve got all the physical barriers of just going out and about, going to gigs. Then you’ve got all the barriers of if you’re in some care home or support living, just making sure that you have good carers around you to actually enable you to be able to do that. Let’s not sugarcoat it. Huge barriers to be able to go out and meet people. And that’s why I think it comes back down for me, training and education is everything. And that’s why it’s so important that we’re educating care staff to be able to support people, educating people in the entertainment industry to be thinking about access at all times just so people feel more comfortable and reliant. I was watching something yesterday about on TikTok, actually, a guy that went out with his first date and his, well, then first date now wife is a wheelchair user, couldn’t get into the cinema, took loads of faff to get into the cinema, and then found out where they wanted to go was on the top floor and they didn’t have a lift. So he carried her up on their first date. He said it was mortifying for her. It was scary for him. It sounded really heroic. He said- I didn’t want to be that. She didn’t want me to be carrying her. And that’s the first date. And they’re happily married now. But you hear things like that all the time.
Nanette Ashby
Especially, I’ve also come across that the non-disabled partner gets praised for being in that relationship. “That’s so nice of you to be in a relationship with a disabled person!” because I guess there’s the assumption if you’re disabled, you can only be in a relationship with also a disabled person. I find that quite troubling as well.
Jennie Williams
Oh, yeah, definitely. And then you find disabled people themselves can really discriminate against other disabled people. It’s not just nondisabled people. “I don’t want to be with another hearing aid user or a deaf person. I don’t want to be with another wheelchair user.” It’s not all there is in unicorns of disabled people. We can be harsh too. It’s really difficult until you get to know someone, as you say, which could be really, really brutal online, to actually be able to make that choice whether it’s actually you like that person rather than you’re not seeing them because of their impairment.
Nanette Ashby
I was also wondering because some of the myths about disability are that we’re not sexual or we don’t have an active sex life or because we need help with things that were seen as children. There’s no need for us to go to the gynecologist, get checkups, get STI tests. Could you, if you have any stories, visualize the experience of what it would be like, for example, trying to access health care, like STI tests or birth control?
Jennie Williams
Infantilization is a huge part of the battle. Again, I think more so when it comes to people in care. People outside of care seem to advocate a bit more for themselves. For people with communication impairment it is exceptionally difficult. We try and work with pediatricians, saying, okay, have these conversations early. Young people start exploring themselves at a young age. That’s how you discover your body, by masturbating, especially little boys that touch their penises at a really young age. If you haven’t got the dexterity to do that and the ability to do that, we shouldn’t be ignoring that as health care professionals, as carers, as parents, we should acknowledge that’s an issue. And that’s really difficult for everybody involved. I do understand that. And nobody really wants to think about their children having sex. But you know what? This is how we exist. And so we have to just acknowledge that that happens. is Infantilization is a huge part. You get that anyway, even when you see, again, somebody who’s a wheelchair user, maybe got communication impairment, go out and it’s the whole “does he take sugar? You’re talking to the carer, talk it over. It still very much happens. It happens all the time. And just bullying, I got a horrible example, actually. We were out filming a little while ago. I was with my colleague, Becky, who has restricted growth, and her husband, Dan, who has cerebral palsy. He’s not a wheelchair user. He’s got communication impairment. They’re two of my trainers. They’re very funny, great couple, communicate really well. And we were doing some filming, and I was waiting. It was two o’clock in the afternoon in London, and I was waiting for Uber. I had to call an Uber for them, and this guy came towards us in a suit, and I thought it was the Uber driver. So I went up to him and I was going, oh, hi. And he went up to Becky and said “If I stick my cock in you, will it come out of your mouth?”
Nanette Ashby
Jesus.
Jennie Williams
And I want to say that that shocked us all. And obviously we weren’t just going “Oh, it’s just another day.” But it’s a abuse that people get who have restricted growth and then getting filmed. She regularly gets filmed. Sadly, if you type in YouTube, this awful word that people use, midget, which you never should use, midget driving down the road, midget driving a car, or something sexual. Sadly, you’ll probably get something that was filmed yesterday. I can’t even remember what your original question was. I was running around a bit, but it’s really in Infantilization.
Nanette Ashby
I was wondering about doctors appointments and access to STI tests or screens like that. But that is a very good point you made. And the abuse that disabled people can face is quite horrific. The fact that that’s quite an everyday occurrence is shocking.
Jennie Williams
It really is. And I think going back to your original question, I missed the appointment bit. Yeah, it’s a massive issue. I just see as we’re on this podcast, my friend and colleague, Emily is ringing me. She went to go and get her (pap) smear done, and she had to go in three different times because she couldn’t get in. Even though they know she’s a wheelchair user, they booked her into going… She couldn’t get in. Then she got on the second time, they couldn’t get her up on the bed. Then once they got her up on the bed, they didn’t have a speculum small enough to be able to use. She has cerebral palsy. Oh, three times just to get a smear. It’s just things like that. It’s not thought about, doctors don’t ask if have any access requirements. It’s not a hard question. My condition involves my vagina and my vulva and I’m quite open about that. I have something called Lichen sclerosus. I have vulvodynia and I can’t just access services like everybody else. But you wouldn’t know that looking at me. Let’s be asking the question, have you got any access to requirements? There are certain positions that I can only be in to have a smear.
Nanette Ashby
I guess people are afraid that they will then have to give down to, well, actually, we’re not accessible. Having to then acknowledge that and having to deal with that.
Jennie Williams
Yeah, absolutely. And I must admit, I don’t like going horror stories and I like saying good things, but I will throw out a pretty bad horror story. I’m also a hearing aid user, so I primarily lip read. And I went to go and have a biopsy on my vulva. And I didn’t know I was going to have a biopsy. I was going in to get checked by the gynecologist. And next thing I know, that was happening to me because I couldn’t hear, because nobody took their mask down to let me lip read. And next thing I know, I was having a biopsy done and I had no knowledge of it whatsoever.
Nanette Ashby
Wow.
Jennie Williams
Needless to say, I have a voice and I’m lucky in as much as I’ve taken that a lot further and turned that into hopefully something positive. But that’s not okay. And I’m somebody that can advocate for myself. I’m a CEO of a disability charity, and I still was in this awful position and it was terrifying. So I just think about people who aren’t able to advocate for themselves.
Nanette Ashby
You mentioned the.Undressing Disability Campaign and I was wondering how did that come about and what were the focuses of the campaign, especially also what kind of feedback did you receive?
Jennie Williams
Well, it’s not just a one-off campaign, it’s an ongoing one. It’s really why the charity exists. It’s such a broad range. As I said, we cover everything to do with sex and disability. We have had amazing feedback. We set something up with the heart because we were having lots of people from around the world come to us. Say, for example, somebody from Japan, a doctor from Japan saying there’s a TV show and they want to talk about sex and disability, but they don’t know who to speak to. And say, okay, I don’t really know about Japanese law, but we can show you what good practice is happening here. So we’re having conversations like that. We thought, do you know what? Why don’t we set something up? We call it a sexy little sibling to LinkedIn, so people can fill their profile out. It’s absolutely not a dating website. It’s where people can go and then fill their profile out and then find people, whether it be occupational therapists, psychosexual therapists, therapists, people who are sharing resources, people who are wanting information. You can start talking to people.
There are lots of people around the world that want to be having these conversations. They just don’t really know where to go. So Undressing Disability is very much an ongoing forever part. It’s like any charity. Your main goal and aim should be that you don’t have to exist. We’re a long way from that. But we’re getting there. Things are changing.
Nanette Ashby
Something that caught my eye from the key focuses of that campaign was the inclusive sex education, relationship and sex education, because I also did the training to become a sex educator. And even throughout the training, I noticed that we were talking about race, we were talking about ethnicity, we were talking about body types, but we weren’t talking about disability. That still is something that I’m very curious about and I’m researching a lot about how to give sex education to make sure it’s as inclusive as possible, also for disabled people. Wondering how that was going and your experiences with that, especially with the new laws that came through in the UK that making sex education mandatory. But from what I know, disability is not included in that.
Jennie Williams
No, it’s not. We don’t run inclusive sex education, but we do work with sex educators and to help them make the material they deliver inclusive, Split Banana is one of them. You’re absolutely right. It’s not. And if you’re looking at something and it doesn’t represent you, it doesn’t look like your body, your body doesn’t move in that way, why are you going to think that’s for you? How are you going to feel included? In specialist schools, parents can still opt out, which I think is exceptionally damaging and dangerous for all the reasons. That sex education isn’t particularly good quality either. And interesting actually, I had this exact conversation with a friend of mine yesterday. I have a three-year-old and a four-year-old. We regularly use the word, you hear, vulva, vagina, penis. You’ll hear that in our house. And my friend’s daughter is seven. Now her doctor, her GP said she can’t have lichens. She’s too young. But children can have this condition, absolutely. But there’s not a lot known about it. And my friend said, just yesterday we’re having this conversation, “can you not say, vulva? Can you only use the term vagina? She’s just too young for it.” And my response back was, so when you say arm, you don’t want to say the word elbow because an arm and an elbow are different things. And I think this is the thing, that we don’t like to use the words. The best thing I ever heard, this is brilliant, I was at a sex education conference and this old school head teacher came in and he said “I’ve had enough of all these people calling different names for genitalia. We use FooFoo, we use fairy. And the next thing we say to a child is the tooth fairy is coming. They think a big vagina is going to come flying through the window under their pillow.” And everyone was just cracking up. And I just thought, wow, that’s it. That’s it. Exactly that. We need to get over ourselves, full stop. Then add the disability layer on top of that. And because you’re going back to your original question right at the start about infantilization, people think disabled people are children, they can’t know about it.
We’re basically working with as many sex educators as we can. And what does access actually look like and what does that mean?
Nanette Ashby
Like you said, representation in the media is a big thing. If you don’t see yourself represented, then it’s very hard to imagine that you can have those experiences that are shown. What feedback did you receive on the campaign in general?
Jennie Williams
It isn’t a short term one off campaign. It’s a long thing. I think people are just bored of us now, but in a good way. When we first did it, we had a double-page spread in the Daily Mail in a positive way, which I was delighted with and couldn’t quite believe. When journalists contact us, they come to contact us in a sensationalized way around sex workers. And I said, all the things I’ve already said to you. Let’s talk about sex education. And they just go, “Oh, this is very boring.” And then they switch off, which is great because I don’t want you to be sensationalizing this. This needs to be going to the people that we want it to go to, which are health care professionals, teachers, all the people, care staff, blah blah, blah, blah, blah, blah, doctors. That’s who we need this information to go to, not just a quick article talking about how disabled people are using their benefits to pay for sex workers.
Nanette Ashby
Yeah, very true. Something I was wondering regarding representation, because even for nondisabled people, the representation of sex in the media is quite damaging or unattainable. And especially if you don’t have representations of disabled people in general being in romantic relationships or being sexually active. Do you have some recommendations of where it’s positively represented or included at least?
Jennie Williams
At least? Yeah. I suppose the program Sex Education, there was quite positive representation there. There’s more social media if you actually go and choose to follow that. But I think the problem is that you’re only seeing that if you’re actually choosing to follow that. To put it in perspective, we’ve been trying for two and a half years to get a documentary. We’re working with a very professional documentary company looking at our sex toys being made, looking at the care home training. None of it is sensationalized, all very real. No channel wants it. And what they do want is that I got contacted saying, “What we want to do is create a sex party”. I was like, Right, okay, “we want to create a sex party and we want to get people along”. That’s not real. We actually started doing a campaign looking into accessible sex clubs. And you can hardly find any accessible sex clubs. And when we found one of them, the guy said, Oh, no, we don’t have accessible toilets, but we could hand out plastic bags. I don’t even know what that means. What? What? What? What? So what they want to create is the channels is something against, and so I should not real and completely fake, and ignore all the actual work that’s going on. That’s that side of it. But I think just every day, you want to see people in dramas or in whatever it is, but they just happen to have a disability. They just happen to have an impairment. You have to mention it. You don’t have to go on about it. It’s not a thing. The fact that people go, Oh, no, there is more people. We’ve got that girl on Coronation Street. The fact that you’re even naming it. You’re naming people and you can count shows how little is actually on TV. Or they’re not baddies. They’re only baddies, the one arm or the guy or whatever. Or they’re really unrealistic.
Nanette Ashby
What really stuck with me the last few years was the James Bond that the villain has to have a disfigurement or visible impairment to signify villainy. That still really gets me. And I recently watched the commentary of one of the movies. The way they just did not consider that at all, the commentary, Oh, yeah, we had a bomb maker, so obviously he needs to have lost fingers. Well, we couldn’t do the lost fingers. Well, then we’ll just give him a burn across his face. The nonchalantness of it, it has no consequences. It’s fine. We need a prop. We just need to make it look more shocking.
Jennie Williams
Yeah. I think with the film Witches, Roald Dahl’s film Witches, and that’s just incredibly upsetting. And so people who actually have a condition and their fingers look like that, and their limbs are like that. And then suddenly it’s evil, it’s scary. And all these kids are scared. Oh, my God. It’s such an old fashioned narrative. And like you say, no one just thinking about it. It absolutely blows my mind. And as you can imagine, the upset that that’s caused. Rightly, it’s not okay. There’s just such… I think that a lot of people who are making these decisions hate to say generation things, but it’s certainly true. I do feel like younger people, people say about being woke, but do tend to be a little bit more aware, are having these conversations a little bit more and are thinking about access a little bit more. Not to the extent we’d like, but definitely more. Whereas some people who hold the power, hold the money are not thinking about these things and think you can’t say anything nowadays. Can you? You can’t say anything Well, you can. You can. But you just have to be really mindful. If a group of people are telling you, Can you please be inclusive and can you please not do this? Just listen and then move on. It’s not that hard. Being inclusive doesn’t have to cost millions of pounds or billions of dollars if you’re making a movie. You just have to think laterally a little bit. And especially if you’re a business, you’ll end up making more money because deaf and disabled people recognize you’re inclusive and they want to spend their bloody money.
Nanette Ashby
Actually, what surprised me when I was doing research for my thesis, I wanted to talk about representation of sexuality and disability, was that disabled people are actually the biggest minority in the world and make up 1 billion people. Even though people might think it’s a small minority where it’s just the 5 % wheelchair users we see, very obviously, it’s actually a lot.
Jennie Williams
Of people. It’s a lot of people. It’s probably more than that because people don’t disclose and a lot of people don’t even understand. So you’re probably looking at it’s probably double that figure, really.
Nanette Ashby
I have a few ideas why this could be such a big taboo to talk about sex and disability, but I was wondering what you thought, what are some causes to why we don’t want to talk about disability and sex, or what it’s not talked about?
Jennie Williams
Because it makes people feel really uncomfortable and it makes people feel uncomfortable because they don’t like it. People find it hard talking about sex anyway. People find it easier to see a music video and that’d be really sexual. But then God forbid, as we said, use the right terminology for anything. That’s really uncomfortable. So we have very strange lines that we draw, what’s acceptable and what’s not. Without wanting to repeat myself, when people think about disability, generally speaking, they think of people with physical disabilities. Quite a lot of the time, quite severe physical disabilities. That makes people feel really uncomfortable. People don’t want to be seen as patronizing because they don’t want to say the right thing and the wrong thing. And that normally comes from a good place. But then equally, we then go back to what we said about infantilizing people. So it gives people the ick, because they’re like, Oh God, you’ve got to think about a disabled person having sex. And they go, Oh God. And then you’ve just wrapped it all up in your head nice and neatly, put a box in it in about five seconds.
And it’s too difficult. It comes with too much red tape, and people don’t know how to even broach it. So it’s easier not to. It’s just easier not to. That’s what happens. As you said, millions, billions of disabled people in this world, you can’t even possibly start to list all the different disabilities. And I think it’s about more and more people coming out who have hidden disabilities or hidden impairments and talking about them more and actually saying, Okay, this is me. I’ve got Croon’s disease and I use a stoma, whatever it is, rather than us feeling the need to hide away. Even basic things like hearing aids are hidden. People wear glasses with no glass in them for fashion. But with hearing aids, they’re always looked at and designed to be small, to be discreet. Even on the adverts, they’re like, This is a little secret between you and me. She hides her hair over hearing aids. Wow. My hearing aids are bright pink, but it’s taken me… I’m 43 years old now. It’s taken me years to get to the point I’m proud of my hearing loss and I don’t care about it at all. Or I don’t care about being seen wearing hearing aids. I don’t even think about it. Did I think about it when I was younger? Absolutely. Did I not wear my hearing aids because I was embarrassed? Absolutely. Did I struggle through life? 100 %. So it comes all the way back down to representation, lack of. I don’t think it’s because people are horrible, they’re not. Some people are. But most people are kind and nice and thoughtful. And I think positively about the human race rather than negatively. But I just think it’s easier not to think about it.
Nanette Ashby
Something that I’m noticing because I only recently was diagnosed with a hidden impairment, it’s quite interesting. I’ve taken the road of I to want to talk about it and I am going to make it a point to let people know. But I know, for example, since I guess I could pass as a nondisabled person, some people around me are trying to not let me disclose because they think it has disadvantages for my future or general disadvantages. For me, it’s quite interesting to toe the line of do I disclose? Do I not disclose? Do I have to? Do I not have to? But that also then brings up situations where I just don’t join a party without saying why, without advocating for myself, because it’s just easier instead of having to advocate for myself or deal with that. But yeah, that’s an interesting conundrum I’m still learning to deal with. How do I communicate and do I?
Jennie Williams
Absolutely. And I think it’s such an individual thing. Even sometimes I don’t advocate for myself, even though, again, I’m in the position I’m in. I’m at the age that I am. I don’t in certain situations because I don’t want to be seen as being annoying. Work is different. We’re actually talking to employment lawyers and we’re going to bring out some resources about disclosing and we keep an eye out for that on our website and our social media. But I think in personal situations, no one can tell you what’s right and what’s wrong. You have to make those decisions for yourself. And actually, sometimes it’s really liberating to go, Do you know what? I just have to go and sit in the corner over there because I’m in chronic pain because I have this condition and it’s called this. I don’t have to go into a massive amount of detail, but just somebody understanding because otherwise, I know certainly for me, people think that I’m quite rude, dismissive. But I just can’t hear you. I can’t hear you in this situation. And I much prefer to let people know. And then they get me and they understand me. That is me. And that’s my personal choice. So I don’t think it’s ever for any of us to put it on anyone else. What’s wonderful is if you feel empowered and a positive thing happened, yes, that was the right decision and now I feel comfortable doing it. If you do something like that and then people are rude or don’t get it, then it just shows they really want those people around in your life anyway. So true.
Nanette Ashby
I’m just checking. I would love to talk a little bit more about the lack of sex education and what consequences that has because I know sex education in general in schools is not great, but especially, as you said, parents can take their children out of those classes. A lot of times there is nearly no sex education. Can you talk a little bit about the consequences of that for the people who didn’t have sex education and what situations they might run into?
Jennie Williams
It’s really, really dangerous if you take your child out of inclusive education because you’re opening the floodgates to potential sexual abuse, even sexual abuse as far as we hear reports all the time, young girls not understanding what contraception is and trying to use a Chris packet, thinking that they have to give three boys a blowjob because that’s what’s expected of them and that’s what makes them feel attractive. Or watching, getting information from porn, which is really, really dangerous and then just saying, Oh, it’s just everybody has anal sex and doesn’t use a condom. If we are just trying to protect our children by not teaching them the words from the get-go and not letting them understand and not educating them, we’re really doing them a disservice, and they are going to end up worse for it and learning in a way that we can’t control as parents. And it’s really, really dangerous. Like I said, I’ve got two girls who are very young and who knows how they’re going to be. But I know that one of their favorite books is how to make a baby. And that is about you need an egg, you need sperm. I want them understanding. So when they get older, it’s not going to be this big, taboo, ridiculous thing that they have to whisper about with their mates. They’re like, Yeah, I know that. Mum’s already told me. And that might completely backfire on me. That really might. But I just remember when I was growing up, the mums that were quite open and liberal, I used to enjoy going round to their houses talking to them, because they would tell us stuff. And I enjoyed that. My mom is fantastic. She’s a great mum. I can’t ask for better, but she was very conservative and very closed and didn’t talk to me about that stuff. So we had to find it elsewhere. And I can’t even remember having sex education. I can’t remember any of it. I certainly didn’t get it from what I learned from school. I learned it from other sources.
Nanette Ashby
I’ve been thinking about it a little bit more. And I’m from the south of Germany and I remember that we were talking much more about alcohol and drug abuse than sex education. Alcohol was really the focus of my schooling because there was a lot of alcohol abuse with young people. That was the main past time, I guess. Football and drinking. There was a lot more focus on that and sex education maybe about all the STIs, but nothing really day to day helpful.
Jennie Williams
It’s funny how we, again, as adults, condition what children should know and what they shouldn’t know. I’m not saying we weight in from a really young age. Again, it’s got to be age appropriate. Especially if you’re a parent, I think, and you’ve got a child that’s got impairment and you don’t think that they’re getting the inclusive education you need, you can do that bit of research and find out what’s age appropriate and talk to that child about it. And of course, it’s going to make you feel uncomfortable at first. But the more you do that, the more comfortable you get. I just know I want my girls to know as much as they can that’s age appropriate, knowledge is power. And to learn what is okay and when it’s okay to say no. And to make choices. I want them to know they have choices. I’m saying these things like I’m a great parent. I get things really wrong. No, don’t get me wrong, I get things horribly wrong.
Nanette Ashby
One thing I still wanted to talk about was the overlap between the LGBTQ+ community and the disabled community because I heard that there’s quite a big intersection and I was wondering how that intersection changes the experience of people. If it’s a positive intersection or if overlap isn’t as harmonious as people would expect.
Jennie Williams
Yeah, yeah. It’s not always. I think that there comes with lots of issues in as much as… I mean, I speak on quite a lot of LGBTQ+ panels and I think that it’s very difficult for lots of people who have a disability, it’s like a second coming out. You’ve got to come out about your disability. Then you’ve got to come out about your sexuality. Really difficult. First of all, you’ve got to do that, maybe to your parents. Again, come back to the infantilization. You can’t be gay, you’ve not got any sexual feelings. What are you talking about? Let alone gay or transgender or non-binary or any of it. Then you’re dealing with generational attitudes a lot of the time, which can be very difficult. Not everybody, obviously, but it can be very difficult for a lot of people, which I understand. It comes down to a lack of education, doesn’t it? The lack of information. Then there are events that are put on that aren’t always accessible and they’re not particularly inclusive. I know that Pride London I’m working quite closely with and LGBTQ+ Foundation. I don’t think it’s for the lack of trying.I think a lot of, particularly the feedback that we get is a lot of men, particularly, they say it goes off this visual quite a lot of the time. And a lot of disabled men find it quite difficult. And again, it comes down to the clubs. A lot of the clubs are not accessible and they’re downstairs in basements or they’re quite small, or if you’re going on to sex clubs, or whatever it is you want to go to. That’s really inaccessible. It’s not always necessarily the attitude. It’s normally quite often be the practicalities and then the support networks you have around you as well. I think we’re trying to improve it, but it’s again, it’s like everything is a slow burner.
Nanette Ashby
I was still wondering, what are you personally most passionate about? Because as you said, you work on a lot of different projects in a lot of different areas of disability, but what are you most passionate about?
Jennie Williams
I think if I was to die tomorrow and I could say, Right, what would your legacy be? It would be that all staff in care homes have training, mandatory training that you have to support the person that is living in your care home or under your care to be seen as a sexual person, whatever that may mean to them. And that might not necessarily mean having sex. It might be as basic as having your nails done, being seen, having those questions asked, getting to get those smears done, getting good to go out on dates, all of those things. And it’d be a normal natural part of someone’s care plan rather than at all one member of staff is quite good.
I think there’s lots of things that I’m passionate about, but I think if I could change anything and have a magic wand and it automatically happened, that would be it.
Nanette Ashby
Okay. That leads to my next question, which is how can family members or caregivers support disabled people better? Or maybe if you’re friends with someone who has a disability, are there some tips on how you can support them better?
Jennie Williams
It’s communicating. When you ask someone, do you want to talk? Sometimes people say no because they don’t at that particular point. Or maybe they don’t trust you there yet, or maybe they don’t really know how they feel themselves. Don’t take one no is a no. Keep going back, keep checking. I think it’s about communicating and it’s like continuing that and asking to let you know that I’m here and I want to talk to you. I think that’s all you can do.
Nanette Ashby
And especially don’t assume anything because I think that’s the trap that a lot of people might fall into. Oh, I assume that’s what the person needs instead of just asking and making sure that that’s really what the person needs.
What are you still curious about in your field?
Jennie Williams
Oh, everything. I don’t even think that… I think we’ve got such a long way to go on all of it. Curious is a curious word to use, actually. But I want the sex toys to come out. I’m really curious to see how they’re going to work, how they’re going to be received. I think that our message is quite a strong one. We’re not saying that this is going to fix and be right for everybody. This is an ongoing thing, and we’re going to be all… We’re going to listen to feedback and I’m bringing out new toys and bringing out new sex aids and resources and things. So that’s really important. Pushing out the care home training even more. I’m really curious to see in the next five years how that will be picked up and how that will be used and what people are doing with that. Yeah, we’ve got a lot of work to do. We were in a very different place than we were when we started the charity. I was begging anyone to help me, and now people do understand the importance of it. But that’s not to say we haven’t got such a long way to go with it.
Nanette Ashby
Very true. Can you give some recommendations for podcasts? I know you have a podcast as well. Any books where people can learn more in the subject and keep going after this podcast?
Jennie Williams
As you said, we’ve got our Undressing Disability podcast. But what we do have is on our website, we have a lot. If you join the hub, there are lots of free resources on there. Recommendations of people on the hub, things that they put up. We have a weekly newsletter that can go out, books that people are talking about, etc. We also have something called the Love Lounge. If anyone has any problem, the Love Lounge is exceptionally busy. Yesterdat, someone came in, a man had a spinal injury. He actually had an infection in his spine and is now tetraplegic. Him and his wife want to get back some sexual relationship. We’ve actually arranged Zoom with them as a couple. So we’re going to look at what sex toys we could potentially talk through with them and then which sex therapist. It’s quite a long-winded process.
Or it could be somebody writes in and says, I don’t know whether I should disclose, can you help me write my in the profile. It could be a lot quicker. We’re really there to support people, but I don’t think it’s specifically books. But we got lots of resources ourselves that people can come and check out. And Spokespeople are really good as well. Spokespeople are worth checking out. Michelle Donald is a great psychosexual therapist, wheelchair user. So if anyone’s looking for someone amazing, then she’s definitely it.
Nanette Ashby
Thank you so much. Can you just say the website and your social media so people know where they can find them? I’ll also leave them in the notes below, but just to make sure.
Jennie Williams
So we’re at Enhance the UK.org. For all the training side of things, it’s Enhance the UK on Twitter, Undressing Disability for our Instagram.
Nanette Ashby
Thank you so much for taking the time. This was really interesting for me to talk to you and I hope the listeners think so too. Thank you so much for taking the time.
Jennie Williams
Thank you so much for having me. It’s a real pleasure. Thank you.
Nanette Ashby
You can find more information and links to everything we talked about in this episode in the show notes over at raffia-magazine.com. Please let us know what you think over on Instagram @Rafia_magazine. If you like this podcast, why don’t you leave us a lovely review on Spotify? Thanks so much for listening and for all your support for the podcast. I’ll catch you in the next episode. Bye!
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