Episode 78: Sex, Female Pleasure & Disability

This week's episode has been sponsored by Oh My Bod, shifting the evolution of pleasure. Hello, I'm Suzanne Noble, and I'm Zoe Noble, and you are listening to Sex Advice for Seniors. And this week we have a special guest we are very excited about, which is Maria. And I discovered Maria through the wonders of Instagram, where she has been posting in relation to, uh, sex and disability, and most specifically, uh, female sexual pleasure and how that relates to her own disability. Welcome, Maria.

So great.

Hi. Hello. So tell me, when did you start deciding that, or when did you decide that you wanted to take up this baton of representing women with disability and talking about sexual pleasure?

Well, it started last summer. Um, there'd been, um, Pride and then Disability Pride, and during that time I watched a documentary, um, about the female experience of sexual pleasure, and it had women from all over society, from different ethnic backgrounds, different, um, the LGBTQ society, um, and different age ranges. And what it didn't have was people with disabilities, women who were disabled. We weren't represented at all. So I thought, well, that's not good. Because, you know, I've been in a relationship for almost 30 years and together we have 2 children and the program just didn't represent me.

I think often we don't think of— when we think of diversity and inclusion and especially when it comes to sexuality, we don't— we're so— we tend to be so repressed in that area, you know, sort of as a culture, as a society. That we don't really think about what the sexual rights of disabled people and even so far as like, what does pleasure look like? And what does, you know, what is possible when you are a quadriplegic or a paraplegic or have a different disability? So I think it's such a great cause, such an important cause to take up. Yeah, I'm, I'm curious how, um, how you find, how you find your message received. Do you get a lot of feedback? Are you feeling like there are people that you're serving that are—

I've, I've had a lot of positive feedback, mostly from people who are not disabled more than disabled. I'm not sure why that is just now. I'm still in the early phases of starting my Instagram, um, but generally people are very supportive and agree absolutely that we are very underrepresented, we are very misunderstood, and certainly sex and disability in many ways is perceived to be incompatible. Hmm. And that spills into different areas of real life, and sometimes, you know, it's not just about the sweet and sticky and the pleasurable side to sex. Sometimes it's a bit more sinister, you know. If we don't understand that disabled people are potentially sexual, then we don't protect children from predators. We don't, um, include children in sex education in, um, special schools. Um, you know, all of these things we need to— we need to be doing, you know.

Yeah.

Um, I, I didn't have sex education at school. I was unfortunately left with a pedophile, which altered my whole childhood and my whole life. And the lack of understanding about my sexuality and my disability has affected my access to sexual health and cervical smears and contraception. You know, I've been to— I went to a clinic and had a cervical smear and was told at the end, as I was getting myself dressed again and then back in my wheelchair, the doctor sat at her desk and was typing up her notes, said, right then, you're all done for another 5 years. And at the time I was in my 30s, so I questioned her and I said 5 years, not the usual 3. And she said, well, she laughed, she said, well, you know, if you were sexually active and/or you'd had children, you know, then I would say yes, definitely come back in 3 years, but obviously that doesn't apply to you.

I cannot believe that. That's unbelievable.

Because she assumed that you are not sexually active. Is that—

Yes.

Wow.

So if I hadn't have questioned her, I would have gone away thinking that there'd maybe some new, um, you know, new way of testing that meant that we didn't need to do this so often, you know. And I could have potentially exposed myself to, to developing abnormal cells and, and not known, you know, an early detection. Is key to all of these things. Absolutely. But she wasn't basing her information on science. It wasn't a medical decision. It was a personal decision, um, coming from prejudice and ignorance, you know.

Yes.

So I said to her, when I realized that she was making the assumption as a disabled woman those things didn't apply to me, I said to her, oh right, okay then, 'Well, I'll be sure to tell my husband. He's waiting in the car with our two children.' And she looked up from her computer like I'd burst a balloon in her face. She didn't know what to say. And to be fair, I didn't wait around for her to come up with something to say. I just left the room because I was so annoyed, you know, because it's dangerous. It's not just, you know, being left out of conversations. It's actually potentially dangerous. To make, to make assumptions like this about disabled people, you know.

It absolutely is. I mean, it's such a good point. And, you know, as someone who is a trauma therapist and a sex coach and a sexologist, I know well that there's an aspect when you, when you don't— when you make assumptions like that about somebody, or you don't provide a certain level of validation for people's experiences and their, and their relationship with their own bodies and their own sexuality and the energy that we run and their own desire and arousal and all of that. We do them a disservice. I mean, it's damaging from a self-esteem and a psychological and a mental perspective as well. You know, it's, it's, I mean, we see that and, you know, we could talk about racism and other forms of discrimination. We need to validate people as whole and healthy and, and that goes for disabled people as well, especially.

Well, yeah, absolutely. When I go for smears, it's very difficult as a disabled woman because I've got scoliosis, so the curvature of my spine means that everything on the inside is off to one side a little bit. And very often I'm told by the people carrying out the tests, well, we can't really properly see your cervix. We think we've brushed the right place, and fingers crossed. Things will be all right, you know. And then when I go for mammograms, I can't reach the machines properly. And they say, well, we can't get a full picture of your breast, but hopefully we've got enough of a picture to determine whether you're all right. You know, it feels like a lottery. You know, it really doesn't feel safe. And like I said before, you know, early detection is so important.

Absolutely. I mean, I'm, you know, we know that as older people— you're the youngest in this group, by the way— but, but we know that as older people that often we are also not recognized as being sexual. That's part of the reason why we do Sex Advice for Seniors. And I suspect it's a double whammy if you are a disabled person and also reaching an older age where it's assumed, you know, double assumed that you're not a sexual person. And I'm curious to know where you are in the menopause because you are younger and how your disability— you didn't say, but you told us you've got spina bifida— how that relates as well to how you're treated by the medical establishment now that you're entering maybe have already entered this phase of life? What's your situation? What, what's your experience now?

Well, I started going through perimenopause when I was about 46.

Oh, right. Okay.

In, in 2017, it was. And at the beginning, it was just, you know, irregular periods and and it, they became really heavy. And then I started having them every 2 weeks and they were very, very heavy. So I went to the doctors and I was told, yes, this is perimenopause. Um, and I said, well, is there anything I need to know? Is there anything I need to do? Is there anything I need to prepare myself for? And the doctor said, oh no, no, no, you'll be fine. Most women sail through this process. There's no reason to believe you'll be any different. Different, which made me feel like I was pulling the disability card trying to ask the questions. Is there anything I needed to know? You know, oh no, there's no reason to believe you'll be any different. So I left and I thought, okay. 6 months later, I had a list of symptoms that I didn't associate with perimenopause because I'd been told that I'd sail through it, and I actually wasn't sailing through it, I was sinking. I was drowning. I was having night sweats, hot and cold flushes. I was having panic attacks in the middle of the night. And it was just, it was just awful. And I went back to the doctors, and because I think I mentioned panic attacks, I was diagnosed with depression, which didn't help me at all. But then I went back.

This is a menopause, this is a menopause problem as much as it is a disability problem.

Yes.

I mean, I don't know any woman who's in menopause that would say they're sailing through it.

No, well, I mean, it's really good to know this because until I did log into Instagram and find you all, I actually thought I was failing. You know, I really thought that I was doing it all wrong, which just makes things worse, makes it harder, you know.

Right. Yes.

But then I went back again and said, look, you know, my symptoms are out of control, and also my libido feels like wet cardboard. You know, my husband and I, we haven't been intimate in a very, very long time. You know, and the doctor sort of looked at me, um, like, and she didn't ask me anything or say anything, but it was very clear that the subtitles on her face said a lot, you know. She was sort of trying to process this whole, how do you know that your libido's changed? Do people like you have libido? You know, um, and so getting support for these things is really very difficult. Because of the original assumption that sex doesn't apply to me. Yeah, yeah, but it absolutely does. Um, so I ended up— in the end, I went private. Um, I got private healthcare, and I'm now on HRT. I've been on HRT for a while, and thankfully my sex life is back on track. My husband is very pleased about that. As am I, um, because, you know, it wasn't great for a long time.

I'm, I'm interested. I'm so interested in this idea of, um, of healthcare for particularly like reproductive healthcare for disabled people. And I have a, uh, like my mind is reeling with why there aren't mammogram machines for people in wheelchairs. And, you know, like, and, and what else am I not thinking of that, you know, that it didn't really occur to me because I don't deal with that on a daily basis. Um, but that's a whole area of activism that I feel like, yeah, taking up, you know, what an incredible miss in that. And even like having a pelvic exam and all of those things that, like, you know, the challenges of being disabled in that respect that I haven't really thought of the impact. It makes me want to ask you, like, if you could come up with, you know, a couple things that you want people to know about sexuality and, and disabled people— people with disabilities, I should say. Um, what are some of those things that you want people to know?

Well, I think it's important to know at ground level that we are potentially sexual. Not all disabled people can have sex, do have sex, or want to have sex. But the same can be said for non-disabled people too. It's, it's not just about being disabled, you know. Not all disabled people have sex, but not all non-disabled people have sex, and that's not a reason to exclude us from these conversations. We need to be involved. We need to be involved in, um, planning, and we need to be involved in the NHS with talking about these machines and, and these procedures and how they're carried out and how accessible or inaccessible they are. And, you know, we— I was told once that disabled people don't know what they need. And the thing is, we do know what we need, we're just never asked. And we need to be asked, we need to be included in these conversations. We need to be on panels, we need to be on boards, we need to be in meetings, we need to be in the planning stages of these decisions, and we're just not. It's— we're always on the back foot, we're always on the receiving end, and we're always just made to make do with what's available. But what is available could be made so much better if we were included in the beginning. You know, absolutely.

And I wonder how much of that is, as Zoe said, that people just don't consider disabled people within the, you know, within the conversations. As you said, how much of that is around some form of embarrassment or not knowing what to ask? And I wonder as well, because having been involved, as I said prior to the discussions, um, with a charity called Outsiders, which was all about sexual rights for disabled people. That's what the whole charity was about, and I was involved in that because they hosted something called Night of the Senses, which was a charity fundraiser, which was a kind of like a kind of sex-positive event for— in aid of the organization. I know that there is a bit of— I suspect there's a bit of gender disparity as well in all of this because when I consider the people that I knew within Outsiders. For instance, I met sex workers at that time that worked solely with men with disabilities because there was a view that, well, guys are always sexual, right? I mean, as long as you've got a functioning dick, um, it doesn't matter whether you're sitting in a wheelchair or otherwise, that dick is going to have requirements, and therefore there were people out there that were really just doing sex work with disabled men that I knew about. But when I think about disabled women, I don't, I don't think anyone I know ever thought about them, if I'm really honest. During all of that, when I was involved in all of that, it was very— it felt I could be wrong, but there didn't seem to be a hell of a lot of women within, uh, disabled women within that organization, and it seemed to be predominantly about responding to the needs of men. I could be totally wrong there, but it does feel like there's a gender disparity in how men are treated with disabilities. Would you agree with that?

I would, yeah. I think it's generally across the board, men and women, um, the orgasm gap, you know, that men have orgasms, it's almost their right, women achieve orgasms, which I object to because the opposite to achievement is failure, and I think we should reframe that and call it experience orgasm. And then disabled people don't have sex, so orgasms don't apply to them, you know, the orgasm gap for disabled people is wider but, but nobody talks about that.

But would you say that generally when you think about, um, gender, that if a disabled— I— if a disabled man goes into a clinic and says he wants to, you know, he wants to have a fulfill— he wants to have sex or he wants to do something, he's treated as if that's a more legitimate, um, issue than a woman? Or am I Or would you say that that's not true, or maybe you don't know?

Well, I think, I think generally women are secondary in, in everything, you know. Our pleasure is, is secondary, and so I think we're not taken as seriously. I think also there's maybe a more inclination to believe that a woman's, um, difficulty in experiencing sexual pleasure is more psychological and a man's is physical. You know, um, I do think that, that men have, um, probably more access to support and help.

Yeah, yeah.

I think, I mean, if you think about men and, um, and, and disabled men, it's not uncommon for— I think you mentioned this, Suzanne Noble Noble— like, it's not uncommon for sex workers to and for it to be more acceptable for a man with a disability to hire a sex worker. But I never hear about women with disabilities hiring a sex worker. I mean, you know, and there are plenty of surrogates, you know, sexual surrogates who, yeah, who help people with all kinds of issues, not just a physical disability. So it's, I think, you know, I mean, let's just name it for what it is. You are discriminated against if you're a woman or deprioritized in the system if you're a woman and you're also deprioritized if you've got a disability, if you live with a disability and then the combination of both, it's like, you know, add Black to that list or some version of brown and you're like, You know, persona non grata.

Yeah, you're so far down the list. Yeah, absolutely.

Suzanne Noble, you had to seek private help when your menopausal symptoms weren't being recognized by your general practitioner and that you ultimately went private, which I, which I think is sad but understandable. What is What's the solution here? Because not everybody can afford to go private. And it sounds to me that there's a— that within the medical establishment, you, you felt disregarded. And so you had to find somebody that would advocate on your behalf. Where do you think the medical establishment just needs to be re-educated? Like what? What needs to happen?

I think we need to start having more conversations with the disabled community. Disabled people need to be more involved, um, and I think women generally, whether they're disabled or not, are not— their health isn't taken seriously very often. You know, we're medically gaslit frequently, and so when you're disabled as well there's this, you know, I've had doctors assume that some of my symptoms are down to depression or boredom or lack of exercise or the fact that I'm disabled and I ruminate, you know, they're not, just not taken seriously. I think we need to, like I said before, we need to have disabled people involved in conversations and educating medical professionals. Rather than medical professionals deciding disabled people don't know what they need, we actually need disabled people educating the doctors who are saying these things and saying, tell them, actually, you know what, we really do. And furthermore, this is what we need. This is what we need. We need these. We need these machines. We need these scanners, we need these people to be doing this, we need this treatment, and we need it at a higher standard, you know.

Yeah, yeah, yeah.

And we're having sex, you know. Plenty of our— plenty of people with disabilities are sexual beings and, and express themselves sexually, and that's so— that's okay. That's a healthy part of, you know, being a human being. And that doesn't stop because we, you know, are in a wheelchair or use a device or, you know, that doesn't mean we're not sexual just because we're not typically abled.

And through starting this, have you encountered any countries where you think they're doing better?

Do you know what? I have America.

Are they really?

Yes, I have a few friends I've found over, um, in America, and there seems to be a lot of sex tech and a lot of— a lot more open conversations about pleasure and how to access pleasure when you're disabled, um, and, um, robotics involved. It sounds very, very exciting, very exciting. Over here, we're a little bit more stiff upper lip, and we don't talk about things, and things are all very quiet, and pleasure isn't really a conversation we want to have, except we do. Um, and I think that's really sad, to be honest. I really do. If I had the money, I'd move to America.

Well, Zoe's in America.

And so, so, Debbie, what do you think?

Yeah, I think that— I think there is a, um, I mean, you know, my perspective is a little bit skewed because I live in this world and I was, uh, involved in, in sex tech for a while. I was the resident sex and intimacy coach for a sexual wellness app, and we, um We did quite a bit with all kinds of sort of guided meditations and, and guided exercises for people centered around pleasure and people of all different abilities and, and, and, you know, colors and, you know, cultures and orientations and all of that. And yeah, I mean, I think that it's an area that people are paying much more attention to. I mean, in this country at least, inclusivity is a big deal and it's— and I think people are really opening up their minds and paying attention to what people really need here. You know, the cultural sort of ignorance and assumptions and myths about all kinds of people, I think, are, are just persistent. But, but I— people talk a lot about sex here.

Yeah. I mean, look, it's a bigger country and people there are— when they don't like things, Americans tend to talk, you know, they tend to be more vocal about it because A, they're paying significant amounts of money to go to see doctors. So when they're not getting the kind of service they want and they're spending all that money, I suspect they're more likely to speak up. Whereas I feel like here in the UK that people are a bit more, well, you know, these people are so time poor, these doctors, they're so overworked. You know, I can't really, how can I expect them to know so much about all of these different things? Therefore, I'm going to have to go and see some specialist, right? Because I know people that, you know, even just generally older women are many, many older women are just dismissed by the medical establishment in the UK, whether you've got a disability or not. And I've, you know, I have loads of stories of my friends who have endometriosis and were just told to just suck it up, you know, and, and, and, and basically what kind of pain are you talking about? It can't be that significant, you know, all that sort of So I think that's something that we have to deal with here. But I also think that you're right, there's a requirement to, when committees are meeting to talk about female health, somebody needs to be on that committee who has some experience of the requirements and the needs of people with disabilities. And clearly that's just not happening, right? It's just not happening. And that's the sort of thing that I think we all should be campaigning for, is to look at what does diversity truly mean. It's not just around age or color, it's also about levels of ability or disability. So I think that's sort of where we need to get to. And it's good that you've started the conversation, Maria, because hopefully that conversation is going to grow. I know you've only started your Instagram in January, and I just happened to kind of come across you, but— and I think you've got a massive challenge ahead of you.

Yeah, I do too. It's easy when all you need to do is remember somebody's, um, pronouns, but when you're trying to talk about the infrastructure of society and changing people's perspectives of disability is massive. It's massive. I don't know what I was thinking. I really wish I hadn't watched that documentary now. It's completely ruined my life. Well, it's—

yeah, but I, you know, what I would say as a person who's, you know, who started this thing and who likes to start things, is that picking the sex, female pleasure disability, right? You can just, you can just focus in on that one, just because that's, that's big enough. That's big enough. Like, you, you don't have to, you don't have to try and tackle everything. And I think that's a— it's a really big and really important topic. And I, I do suspect that you can make a difference. It's just about getting, getting recognized that you ex— you know, you're out there and you exist. And we hope that through doing this podcast with you more people will get to know about you and, and, and be interested in what you're doing and want to support you. And yeah, and we'll post all of your Instagram, you know, your Instagram and everything so people can find you. And if there's anything else that you would like us to help you with, then please do let us know.

Thank you very much, that's brilliant.

No, it's been really great hearing your story and Goodbye.

Goodbye.

Thank you so much.

Appreciate it.

Thank you for having me. Thank you.