Breaking The Silence Surrounding Sex And Disability

0:28The world changes every hour. More than 70 million Americans live with a disability. That's roughly one in four adults, and anyone can join that number at any point in our lives, through an injury, illness, or simply getting older. Disabled people are one of the largest minorities in this country, yet there's one part of their lives that almost never gets discussed. Sex. Today, that silence is being challenged by disabled people themselves, online, in film and television, in conversations happening in bedrooms and doctor's offices across the country. In February, we brought you 1A's first sex week about sex across our lifespans, and you told us you wanted more about sex and disability.

1:10How do we express our needs, especially when the sex we want doesn't match common ideas of what sex and the people who have it can look like? I'm Jen White. You're listening to the 1A Podcast. Today, we'll hear about desire and intimacy across a range of experiences, physical and developmental disability, chronic pain, chronic illness, and everything in between. Stay with us. We'll be back with more after this break.

1:38Support for this podcast and the following message come from strawberry.me. Be honest. Are you happy with your job? Are you stuck in a job you've outgrown or never wanted in the first place? Are your reasons for staying really just excuses for not leaving? Let a career coach from strawberry.me help you get unstuck. Discover the benefits of having a dedicated career coach in your corner and get 50 % off your first coaching session at strawberry.me slash NPR. Welcome back to the 1A podcast. We're talking about sex and disability. Let's get into our conversation and meet our guests. Joining us from Ypsilanti, Michigan is Shanna Katz-Katari.

2:19They're a professor of social work and of women's and gender studies at the University of Michigan. They're also the author of Exploring Sexuality and Disability, a guide for human service professionals. Shanna, welcome to the program. Thank you so much for having me on. I'm glad to be here. Also with us from Central Valley, California is Bianca Laureano. She's a sexuality educator and curriculum writer. She's also the founder of the online school AnteUp and the co-founder of the Women of Color Sexual Health Network. Bianca, welcome to the show. Thanks for having me. I'm excited to be here with y 'all.

2:51And a note for those listening that while we won't be getting graphic, we are going to talk openly about sex and intimacy this hour. During our week of shows on sex, we heard from many of you about sex and disability. We got this message from Joan who writes, it is such a fallacy to assume that people with injuries and various conditions or disabilities have no desire or need for sex. And there is always a way to make it happen for that person and with that person. Shanna, what are some of the preconceived notions many people hold around whether people with disabilities want to or are able to have sex?

3:26Yeah, you know, I think one of the most common conceptions folks have about disabled folks is that they're non-sexual, right? We simply become non-sexual entities solely by virtue of our disability or our body-mind and how we move through the world. And, you know, what I remind folks is that everybody has a sexuality, and that can include, of course, asexuality and folks on that spectrum, but that everybody gets to have a sexuality and everybody, you know, gets to be connected to their body and their mind in the ways that work for them and to explore that. On the other hand, conversely, sometimes we see folks with disabilities, particularly those with intellectual and developmental disabilities, who are expressing their sexuality as hypersexual just by going through the normal process of sexuality.

4:17And I think that comes a lot from the infantilization that we put on folks with disabilities, especially mad, neurodivergent, and intellectually and developmentally disabled folks, so that when they're doing anything sexual, we're aghast at it because we don't see them as sexual beings. We'll talk more about that later in the show. We got this email from Robert who says, how can disabled individuals re-engage with their personal sexuality when functioning decreases or changes and there is body grief? Now, the onset of disability or chronic illness can change our relationship with our bodies. And understanding that there isn't a singular experience, Bianca, I'd like to hear how that might show up emotionally or psychologically.

5:01Absolutely. You know, grief is something that disabled people are so uniquely positioned to experience consistently throughout our lives. So we have a really unique relationship with it. Disability is also so dynamic. And so it evolves with us as our bodies evolve. And I think one of the fallacies in a lot of my training as a sexuality professional was that changes in our bodies only happen during puberty. And maybe if you have a vulva and reproductive organs like a uterus, you might go through menopause. But we're realizing now that changes in the environment impact our bodies and our minds and the ways that we move.

5:36And like our first participant who shared, accidents also occur. So disability can occur throughout our lifetimes. And it's really important to identify and be able to say, I have grief about my body changing. It's a really important conversation to have because once we're able to say that, we're now able to identify, like, where is the grief? Is it in my body or is it somewhere else that's moving in a more expansive way? But I think grief is also so unique in this moment in time while we're witnessing wars, which create more debilitating experiences and more disabilities for so many people. So we're kind of like in a very collectively grief, grieving space, so many of us.

6:19And I think one of the ways that we need to remind ourselves that disability reminds us is that we need to move a little bit slower. We need to move at the pace of our grief. We can't rush through it. It's not something that needs to be cured or corrected. It's a part of life. And if we're not talking about these types of experiences, we don't give ourselves the potential to understand a full range of emotions that our body minds experience. Well, and Shanna, are there practical ways to rediscover or reconnect to your sexuality when your body feels unfamiliar or maybe even unreliable? Absolutely.

6:54You know, one of my favorite things that I suggest to people is what's called a modified sensate focus exercise process. and this can be for anyone whose body is changing, whether it's because of aging, disability, you know, again, the world and what we have access to. And so it's starting from scratch again, both with your, you can do this with yourself and, or you can do this with a partner that you've had and is to start kind of at what we'd call, you know, the, the base of things and just start with kissing and touch above the neck. If you have sensation there, right. And to say, what feels good here.

7:30And do that for a week, which is not to say you can't touch other folks in other spaces, but what feels good to you when your fingers go down your face or you're rubbing it up against a soft blanket or somebody is braiding your hair, whatever it is that feels good. And then the next week you would move down to the torso or wherever else you have touched the neck. And then you can again kiss and touch, but not including any parts that we would generally include sexual, like the breasts or the chests. And from then on, then the next week you would include those. And the next week you'd continue moving on down the body, but not including the genitals.

8:07And then you include the genitals. And all of this is without the goal of having an orgasm, but just enjoying touch, figuring out what does feel good for our bodies now, because we tend to get into these cycles around how we have sex, right? And this is true for everyone. This is, you know, quick Friday night, quickie before the kids get home from soccer practice, or, you know, the, you know, we do things the same way every Saturday afternoon, a lazy afternoon in bed, which is great, right? We need scripts that our bodies are comfortable with. And as our body and mind are changing from medication, from disability, from, you know, mental health, all of these things, it's important to check in and say, is this what's actually working for my body?

8:52And if it's not, how can I try things that are different? And then the other quick thing I would just say is, how do we divest from these models that center able-bodied, neurotypical, white, cisgender, heterosexual ways of being, right? That sex is always a baseball diamond or a set of stair steps and we're always trying to move to the next thing. But if we think it as, my father actually said this when I was young, but thinking about sex as a smorgasbord, if you will, and figuring out what works for you and your bodies and your partners, rather than this like model that we have to like bust through.

9:36You can go back for second helpings, you can load up your plate with one thing, or you can try out lots of other things and if they work great, but if not, you don't have to eat them. And there are other things to try. We got this message from a member of the 1A Tech Club in Arkansas. I'm a prostate cancer survivor and single. As a result of what I went through, I have erectile dysfunction. I believe I could still have very satisfying sex with a partner, but finding a partner with patience and tenderness to help me through that exploration has been impossible. I have not been able to find any level of intimacy with anyone for a very long time.

10:09And Bianca, we received multiple questions along these lines. Finding partnership is an uphill battle for a lot of people. What advice do you have for disabled people who are seeking out romantic or sexual partners? Yeah, a lot of disabled people want to have sex and finding each other is difficult, especially across time and space when we're doing more things virtually. So I usually encourage people to first start looking within disability community because so many disabled people have the exact same concern and yet they're not looking within the community to find partners and lovers and I think that brings in another component to talk about like ableism and desirability right are disabled people taught we are um to not view our bodies as desirable especially as they change or age I mean this is a very cultural phenomenon here in the United States, but it specifically and uniquely impacts disabled people as well.

11:07So this idea of my body doesn't function the way that I understood it to or was told that it was supposed to, now I'm experiencing change or a shift. How do I find a relationship that will help me hold and explore? That requires some intimacy. It requires vulnerability. So it disrupts the way that people are taught to date. It impacts the way that we're supposed to really reconnect with one another. And these are moments where we really need to become creative and slow down a little bit. So maybe we're not going to immediately jump to penis and vagina intercourse, but we're going to start with holding hands and using some of the somatic activities that Dr.

11:46Shanna shared. Well, we have to take a short break, but when we come back, we'll talk about the challenges of navigating sex when living in assisted living homes or housing with limited privacy. That's just ahead.

12:02Let's get back into our discussion about sex and disability. We heard from Evan Sweeney. He's the founder of Cripping Up Sex. That's a sex education website for disabled people where you can find tips for more accessible sex. He has cerebral palsy and he's nonverbal. He sent us this comment and his assistant is reading it out loud. Many people have the notion that it has to be this big talk when in reality it can be casual and even fun. Starting with how your disability affects you rather than giving your partner a WebMD explanation can help ease you into the conversation. Make sure you mention what you can do as well as what you have trouble with.

12:38Let your partner ask questions, and I highly recommend them feeling your body in non-sexual ways before you two move into the bedroom or kitchen or wherever. Thanks for that, Evan. I want to pair Evan's comment there with what we received from Clint, who writes, I've lived with MS for over 20 years and my sex life is non-existent. I am unable to masturbate and my partner isn't receptive to my needs. Shanna, any thoughts or advice about how to communicate what you need from a partner? Evan mentions that sometimes he emails a partner in advance to just really lay out what he wants to do for them.

13:16Any guidance for Clint? I'd say really thinking about the different ways that you communicate best. So it could be email. It could be some text messages. It's going to be really personalized, right? So I kind of come out as a Miss Frizzle 1950s housewife vibes. And so that's how I show up. And I'm like, honey, when you're home, would you consider helping get me an ice pack and set up in bed and maybe we'll see what happens? Versus someone who is a bit more serious might have a flair for the dramatic or somebody who's very direct might be like, yeah, today's the day that XYZ is not working for me.

13:54Can we do ABC instead? I would also say that, you know, bodies and minds are so brilliant and resilient and disabled people are really scrappy and creative. And so when I hear someone say something like, I can't masturbate, what I actually hear is I can't masturbate in the way that I was used to doing it. And I wonder if there are other things that would feel self-pleasurable that might not be the same thing, but reading erotica, watching pornography, sexting back and forth with a partner, massaging one another, taking a warm bath together, cooking a meal sensually in the kitchen. And again, just rethinking, if your need is touch, what could that look like?

14:41If your need is sexual release, what could that look like? If your need is something that I'm not even thinking of right now, how do you ask for that need to be met? Well, here's a message we got from Matt, who writes, sexual aids are a great way to meet your needs while living with disabilities. There's a whole world of sexual aids ranging from handles to pillows to harnesses and more. And here's Evan Sweeney, the founder of Cripping Up Sex Again. I view sex toys as assistive technology like walkers, hearing aids, braille, etc. Unfortunately, I cannot recommend one toy that works for any and everybody, as every body has different needs.

15:16Shanna, what are some of the tools or adaptations that people can use to make sex more comfortable and ergonomic and more pleasurable? Yeah, so when I was trying yoga when I first got chronically ill and everyone recommended it, one of the types of yoga I tried was restorative yoga, where they basically put a bunch of pillows underneath you and you just relax in and melt into the position. And I really suggest that idea for people around sex is go to a local thrift store or around your house and gather up pillows of different shapes and sizes and bring them to the bedroom. There's no need for anybody to be uncomfortable during sex.

15:54So you can prop up body parts. You can lay on your side if laying on your back is not as comfortable. So getting creative around that. I encourage people, if it helps their body feel good, use heating pads, use ice packs, use handles, bars, whatever you need during sex to feel safer and more comfortable. And I would also say there's starting to be, you know, many sex toy brands and even lines of kink toys and other things are making accessible toys that have longer handles or easier grips or they're round or you can put them in place or you can use them with remotes. And while that's not always designed for people around disabilities, that's absolutely something that can be used by people to support their disabled needs.

16:38We got this from Melissa who writes, I'm the parent of an older teen with a neuromuscular condition. They have physical but not cognitive challenges. Getting folks who are comfortable talking to them about contraception and pleasure is wildly difficult. Care for transition age young people needs to do better. And Bianca, I'd love to hear from you on this. how can people with significant care needs broach the topic of sex with parents, with medical providers, or with caregivers? Yeah, it's a really good question. I love it when parents bring this in because they've focused on recognizing that their child does possibly want a sexually expressive life.

17:17And so I think it comes under training for many people. We don't have the training offered for people to understand And this is a core component of individuals' needs and interests, right? People know how to bathe someone, but they're not talking to them about what they're doing next. And I think those are some really common ways that we can incorporate and help guide people who are in caregiver situations. There are several disabled sexuality professionals, educators who do virtual trainings, virtual offerings, who support parents, who support individuals, who help individuals find the care that they need.

17:52And so I would usually refer to Finding Us. We are very accessible online. We do one-on-ones. We are happy to fill in a lot of the gaps that do remain as we try to continue to do those kinds of trainings with service providers as well. I think it's a really great reminder for all parents, no matter what disability or abilities your children have, is to remember that if you're not talking about a topic, you're creating an environment where your children are learning this is not something we discuss in this home. So even if you're uncomfortable, if your palms are sweating, if you stutter, if you fumble, you want to get the words out of what you want to talk about.

18:27So even if it's just dating and relationships, you want to make sure that you're talking to your children about using different types of condoms, making sure they know that those are available to them, what different contraceptive options exist and which ones might or might not complement their medical regime if they have one, a regimen if they have one. and be clear that they get to change their minds as well if something's not working for them. So it does take a lot of individual activism. And there are resources that are available. And this is another big lift as well for medical providers to also be able to do the work to unlearn their own ideas about what is considered a good, healthy body.

19:10We all have great bodies. There's no wrong way to have one. Yet there is a lot of oppression and ideas of discrimination that impact the way that people seek care and are able to have it, especially as disabled people. Well, that echoes this message we got from Stone, who writes, young adults who are first entering the sexual exploration era of their life face a heavy stigmatization from their parents or caretakers and are often treated very childlike for extended periods of time beyond their youth. This stifles their sexual desires because the parents are scared. So not only are they wanting to have sexual encounters, but they also can't receive resources associated with or to prepare themselves for such encounters.

19:49Shanna, how have you seen families or caregivers navigate what sounds like what's first a bit of a mental block before they could even get to the discussions and the resources around having a healthy sex life? Yeah, this comes up a lot. You know, I think one of the things that Dr. Bianca already mentioned is navigating our own senses of ableism, whether it's internal ableism for ourselves as disabled people and being like, oh, I can't do this or nobody wants to have sex with me. I'm not desirable anymore. But the same is also true for parents, right? Who in most cases want what is best for their child or want their child to be safe and protected.

20:32We know that there's really high rates of sexual assault and sexual violence against children with disabilities, particularly those with intellectual and developmental disabilities. So oftentimes that plays into their reaction of, if I just keep my child in this kind of infantilized space, I can always keep them safe, right? And that's not true for any set of children, although that is a worry that most parents have. And so I would say the same to parents of disabled children is, you know, if you genuinely want your child kept safe, you have to meet them where they are, right? Because otherwise, this is where we get things, you know, on the down low, people are not telling you what's happening.

21:12And that includes in cases of sexual assault and abuse. If we don't talk about this, then there's no space for reporting those things either. But it brings up the question for me of consent. And people with intellectual development, developmental disabilities have historically been denied the right to make decisions about their own bodies. We can look at the history of forced sterilization, for instance, in the U.S. So what determines how and whether someone can consent to sex? There are age-appropriate ways, and that's kind of somebody's lived age. You know, for some neurodivergent people and intellectually disabled people, that age might not match up with the age of their, you know, kind of the physical age of their body.

21:55But there are ways to talk about consent at every level. And we know this because we talk to three-year-olds about consent, right? And what happens to their bodies. And a big issue we have in the disability community, particularly folks who've been disabled since being children, is that their consent and bodily autonomy has been taken away, right? We take you to the doctor. We've been waiting to see this provider for a year. You have to let him touch your body. You have to let him give you these shots. You don't want this procedure, but this procedure is what you need. You have to let this happen.

22:23We're going to OT. We're going to PT. We're seeing a therapist. Like, all of these things have to happen. And so in the same way that we're now encouraging kids to, you know, family members to ask kids about consent, you know, can I touch your body? I would really encourage parents to center consent in all of their conversations with their kids with disabilities. Is it okay if I move your legs in and out of bed? Is it okay if I change your catheter? Is it okay, you know, I'm going to move you here. How would you like me to do that? And from there, we can build on conversations of consent. But everyone has a right to consent to what is happening to their bodies, whether it's sexual or non-sexual throughout their lives.

23:02This question of autonomy comes up in an episode of HBO's The Pit. This is a conversation between Dr. Mel King and her sister Becca, who is autistic and lives in an assisted living home. And Mel just found out that Becca has a boyfriend and is having sex. When Adam asked you to have sex. He didn't ask me. I asked him. And so you didn't pressure? No. So you wanted to have sex? I wanted to have sex. Sex is great. That storyline sparked public discourse about people with intellectual and developmental disabilities, ability to make their own choices about having sex. Now, Tal Anderson plays Becca on the pit.

23:43She's also autistic, and she sent us this message. I understand that it's not black and white and that people have individual circumstances, but the right to be part of making decisions about your own body and issues that affect you personally is a right that we all should have. That includes the right to privacy and finding joy and happiness for yourself within your resources and constraints. I do get responses from non-disabled people, and it's obvious that it's a very polarizing issue. I also hear from many neurodivergent and other disabled people who feel that finally the subject of infantilization of disabled adults has gotten a platform.

24:32This storyline has made them feel seen and has sparked open conversation with family and caregivers, resulting in a better understanding of their point of view. Tal, thanks for leaving that message and sharing that with us. In The Pit, Becca, the character, mentions attending a sex education class at her assistant living home. Bianca, what are some of the barriers people with disabilities face when it comes to accessing information about sex on their own? There's so many. I mean, adults experience this as well. But I think one of the main challenges is that a lot of resources don't communicate at a very plain language level for people who may interpret information differently.

25:15The United States in general has a fairly low literacy rate. So we need to be creating content that people can understand when they directly come into contact with it. So websites, for example, that have a lot of words and not too many pictures or breaking up the space of the lines. That can get really confusing, overwhelming, not very welcoming for people to stay on a website to gather the information. There's also a lot of misinformation on a lot of websites. I mean, we're living in a generation of tech. It's the future for many of us. And that information is constantly evolving. So I think another challenge that emerges is identifying what do I believe, what do I know is valid.

25:57So media literacy and those understandings of how to interrogate media and how do I trust this particular source is really important, which is why finding disability community is really helpful. When many disabled people, especially newly disabled people, are trying to figure out what's happening to my body, how do I build a relationship, where do I find lovers and more, they can find some of those answers in disability community. But if we keep people separated and not connected to one another, that is a direct violation of interdependence, of collective liberation. And it doesn't get us to the space that we all want to be at, where our needs are all met and we're able to be in community.