Sex and Disability

UU: But then there's sex.

S1: Hi , beautiful. Ms.. Lolly here with another episode of Everyone's Doing It. I'm really glad you showed up for this one , because the conversations that I had with today's guests were super eye opening to me , and I think they will be for you , too. The idea for this episode , it all started while I was at the gym. I was a little bored on the treadmill , which happens every time I go. I looked around and noticed all the people doing different exercises and all with different goals and reasons for being there. So 20 minutes , 30 minutes in my mind continued to wander and I started to think about human bodies as these ever changing things with various levels of functioning at any given time. Some days you're tip top , some days you're sick , some days your neck hurts from staring at a screen all day. And sometimes the functioning of your body is much more of a challenge than that. I realized I've spent a lot of time talking with people about how mental health affects sex , but the topic of physical health rarely comes up in these conversations. So I set out to change that. This week on Everybody's Doing It with Ms.. Lolly. We talk about sexual discovery and pleasure through the lens of physical disability. This podcast is about sex. There will be language not suitable for all ears , so be advised. The spectrum of how people's minds and bodies show up in the bedroom is huge. Our physical and mental health is not stagnant and one always affects the other. I wanted to talk with people who have spent time understanding this connection and how powerful it can be since the spark of curiosity started in a gym. The first person I thought to talk to about the ever changing body was Javon.

S2: So I played every sport except for hockey and golf. Very active my whole life. Pursued an NFL career. I chased that as long as I could , you know , sustained some injuries , which led me into looking into how and why the body moved and how everything kind of comes together. And then also the process of getting back to 100%. I got my degree in exercise science , and then from there I started working with the general population and athletes. And I won't say that I specialize in like corrective exercise , but I definitely dabbled quite a bit in that general area.

S1: This man helped me through the aftermath of a very long term injury that had me on crutches for at least a year and walking funny for many , many years after that. He taught me how to look at the body as a bunch of parts that all work together mind , body and nutrition. Currently , he is the director of strength and conditioning at Dallas Strength Coach. He works with amateur and pro athletes and has been an athlete and a coach himself for over 20 years. And while I just missed him because I haven't seen him since he moved to Texas , so I thought I'd give him a call. How important do you think the functionality of a person's body is to their life and their existence ? Movement.

S2: Movement is life. You know , movement is life. I think the more you move , the better you feel from moving around and doing things. I feel like that's how people's energy is kind of given off. That is how people start to connect on so many different levels. I think the moving little by little every day or doing something , you know , whether it's getting in the yard and doing basic stuff , chores and things like that , walking going up and down stairs are all the essential to your well-being and your health.

S1: Yeah , focusing on the day to day.

S3: Things you can do in the present rather than , you know , worrying about what you didn't do in the past or what you should be doing in the future.

S1: You know , I think that's something that that a lot of people struggle with being the best you can be right now in this body right now , because the future who knows what that's going to hold. We're all going to get old if we're lucky , you know , and our bodies are going to change and.

S3: They're going to function very differently.

S2: So think like a perfect picture of health isn't linear. Things are always going to be some ups and downs , and that's kind of part of the game. Things are very adaptive. There's change to be made , so you have to deal with stress for your body to say , okay , well this is how much I can take.

S3: What steps do you take to make yourself feel like you are functioning at 100% even when you're say , injured for a long time.

S2: Doing the things that they want to do , you know , even if it's just something small by yourself or if it's small with somebody who you love and trust. But , you know , just definitely being active on some level , because I think the biggest limitation is like in your mind and then how you see things , you still have to make the decision to to look at it and say , Whoa , I can still do something with what I have. You make your mind up like what you want to do. You can't look at this set of circumstances and , you know , spend time making that your existence. You have to make a decision and say , hey , this is not the best , but maybe this is really a setup for me to thrive despite my circumstances.

S4: As much as.

S3: You're a person who knows.

S1: So much about the body and the physical aspects of every chemical that happens in your body , you are still a mind over matter person. I swear.

S2: The biggest part is going to be your perception of it all. You can look at things and say it's not going to work out. And you're right. And you can look at things and say it's going to work out and you're right.

S1: Mind over matter. I love that. But , you know , easier said than done , right ? Not everyone is as naturally positive and optimistic as Jon. I needed to talk with someone who's experienced dramatic changes in their physical functioning , and he was blunt and honest about their feelings and experiences , even the not so good ones. Rachel came to mind. Rachel is a badass middle school teacher who knows how to support their students , and they have creative ways to give kids permission to be themselves. They are also one of the most open people I know , so I called them up to ask a million questions about their experiences of sex and dating while you. Using a wheelchair for the first time. How do you talk about.

S3: Yourself and your state of being when you are in a wheelchair ? Because I know that you were in a wheelchair for a long time. Yeah , almost four years.

S5: And then I've been out of it for two and now I'm in it again. I just say I'm disabled and I know that that.

S3: Was also something that all of a sudden happened. And then there you were , in a wheelchair for four years. Yes. Shortly after my.

S5: 30th birthday , I got diagnosed with Crohn's disease. And that's essentially how I wound up in the wheelchair was so it was my femur that stopped getting blood. And then they developed osteoporosis from 30 to 32 is when I started having to get hip surgeries and stuff.

S3: So at the time that you were in a wheelchair , what was dating like for you ? Oh , I avoided.

S5: It every time I went out. Like the interactions I had with people were so condescending. I was just like , I don't even want to like , date. And then at some point with my hips , my legs were , like , pinned together. I couldn't open my leg , like , more than to , like , wipe when I went to the bathroom , when I finally did start dating , I purposely chose people that were like further away so we didn't have to meet in person. So that way I didn't have to like navigate dating feeling like different all the time.

S3: So the physical side of it , you just kind of gave up on.

S5: Yeah , like someone wanted to hook up with me. It felt like it was for charity. I literally had people telling me this guy was like , Let me go home with you. I'll go down on you. You deserve love , too. And I was like , You're acting like I'm up there. Like. Like I've never been like , I'm fine , bro. Like , I don't need you. And his weird reason was his sister's in a wheelchair. No , Like , it's a Oh , yeah , that's gross. Yeah.

S3: Yeah.

S5: And it was so like , that's really gnarly. And that's like has been like the experience when I was in the chair , like going out and like , meeting people.

S3:

S5: I think because I would have I know I would have got bored. Like I'm like , I need somebody. I need something. Like someone talk to me. It's just if my legs stay pin together , I probably would have been less serious about how I would pursue the relationships because I would expect that most people would expect like sex at some point.

S3:

S5:

S3:

S5: So it would be like impossible to get in there in a comfortable way. And you didn't.

S3:

S5: I mean , I guess like , I did get like , like , like a clit stimulator , that that's all it does. And I was like , that was cool because I don't need like , like penetrative sex in order to get off. And instead of trying to like , teach someone like , how to work with my body was like , no , because I didn't I didn't care about anyone that I was seeing casually at the time. Not enough to invest time and effort into making it like a good fuckable moment.

S3: For four years you were avoiding real , deeper connections or at least deeper connections with people that you could physically touch.

S5: Yeah , I felt so devoid of like , touch. I got a robot foot massager and I was just like , Oh man , just having something like Squeeze me. It feels nice.

S3: Just as humans , we need that physical touch. I think a lot of people who all of a sudden find themselves not as physically abled , I guess , as they once were , go through that thought process , too , right ? Who's going to want to , like , figure this out with me ? Exactly.

S5: That that last one , like figuring it out because , like , I didn't know. It was like I didn't know how long ago was going to be like that. So didn't want to , like , invite someone in my life and then have them stuck with like a cripple like that. They have to like , look after and it's just a wheelchair. It's not like I have cognitive disabilities or anything else. It's just like because I'm in like a mobile device. It's like there's like an immediate switch and how people perceive you and I didn't really know know that because people would always be like staring either at my legs or like trying to figure out like , what was wrong with them. Or they would be like trying to figure out , like , what's wrong with me ? Completely like , So it was like every conversation I had with people , we started off with like , What's wrong with you ? Okay , so you're normal. Okay , now we can talk like , Oh God.

S3: And that's just with people that you're not trying to date.

S5: Yeah , that's just people out and about usually think , oddly enough , being in the wheelchair , I'm more like. Like , like consider myself like. Like pansexual now. Like , whereas before I was like , I'm very straight and I don't know if it was like the wheelchair just having to sit and think about how people interact with me or what would really make me happy. Because when it got to the point where I couldn't like have penetrative sex , and I was like , Well , I don't really even enjoy it. I really enjoy like other things. So it kind of like at least like made me like , sit and think about what I wanted for my body. And then I kind of like open my eyes was like , Oh , I'm a little gay. Don't know , because I felt like I was like different. And then I was like , Wait. And then I felt like , Oh , I'm queer. And then queer people always feel different. They've had a lot of other marginalization. And then it kind of it works like it's like there's similar like struggles and stuff. And so I attribute some of my queerness to the wheelchair experience because it forced me to like look at myself and what my wants and needs were.

S3: Yeah , really changes the perspective of what is like , you know , penis and vagina does not mean like the that's not the only way to have sex. Well , what a beautiful thing to realize.

S1: Rachel found that in a situation where their body didn't function how it used to , they were able to redefine sex and their sexual identity altogether. They found various workarounds and tools to get their physical needs met and communities and partners who are able to understand and fit in to their life. When we come back , we will hear from a nurse and sex educator who is paving the way for more open discussions about sexuality and disability. After getting off the phone with Rachel , I became really interested in looking into resources and tools and sex education for people with disabilities. That's how I found Ryan or Ray. Ryan is a nurse advocate , athlete and host of an Instagram video series called Dildos and Dislocations , where she discusses her experiences and provides sex education and toy reviews. Ryan has lived most of her life with a disability that makes her joints chronically dislocate , which unfortunately derailed her dream of becoming a dancer. As a second choice , Ryan decided to go to nursing school , but the program was backlogged for years. So as her third choice , she pointed herself towards health sciences , where she found a special concentration in human sexuality , which must have been kismet , because , as it turns out , studying human sexuality fit her just right. And it sent her down a path to become an educator , advocate and role model. Can you put into words your passion.

S3:

S6: I'm teaching them ways to advocate for themselves. When I was living in southwestern Virginia , teaching human sexuality to people with disabilities , that's not a thing that existed. There was no one else doing that. It wasn't something that they could just go and ask their doctor about. I was working in the case as a case manager in the hospital at the time , so I would have been the one supplying those resources had they existed. Just showing people in each of my roles that there are people like myself out there who exist. You are open minded and who are patient and who will stick with them , whether it's a new sport , whether it's a new diagnosis , whether it's just learning about their own sexuality. It's just getting to be the person that I needed when I was newly diagnosed , newly in the sports brand new nurse , that kind of a thing that has tied all of my interests together , I think.

S1: So you decided that you were going to become the sex educator.

S6: I have been openly queer since the second grade when I found the language that I needed because my family was this open , honest , communicative group of people. As I got older , I always ended up being the person that friends would come to to ask their sex questions. Just because I grew up with that open mindset about sex. And so I was diagnosed with my disability , Ellas Danlos Syndrome at age 16. And at that time in my life , I had planned to go to school for dance. The doctors were like , Yeah.

S7: No , that's probably not a great idea.

S6: With my disability , every part of me dislocates. In every part of me is very stretchy. I got to college and I was like , Well , I'm not really sure what I'm going to do. I been working as an EMT in high school and I really liked that hands on medical approach to things. And I said , Well , if I can't perform , maybe I can make a living out of seeing patients. I went to study nursing and that nursing program was backlogged. Like , I mean , I would have had to drop out of college and come back in a couple of years in order to get into that nursing program. And I was like , Well , I'm not doing that. I was 18 years old.

S7: My parents are paying enough for me to be here. I will find something else to study. So I started studying.

S6: Health sciences and found a concentration in human sexuality. I graduated from nursing school in 2015 as my disability kind of progressed and I became a wheelchair user. Eventually , I was kind of at that point posting my story online , and that was when I realized that when it came to sex ed and that kind of thing for people with disabilities who may , you know , have different sensations that they enjoy , different levels of ability as far as toys , things like that , nothing existed. Even a friend of mine who.

S7: Was nine years.

S6: Old , they found a spinal tumor and had to.

S7: Remove part of his spinal cord.

S6: It was crazy experimental thing , surgery , making him instantly a paraplegic. His mother happened to be a nurse I worked with long term , and I said , Please tell me they at least had this discussion of puberty or what he would go through with you. Just absolutely not. I got nothing. I was just blown away and working as a as a registered nurse in the hospital. I didn't really have the time to commit until the past couple years. And I had this kind of Instagram thing going. I said , you know what ? If I started making videos discussing this part of sexuality and this within disability ? And so I created a video series called Dildos and. Dislocations.

S7: Dislocations.

S6: Specifically just about sexuality and disability and everything in between the videos.

S7: Or not specific to people.

S6: With disabilities , but it is inclusive to that. It turned out that the people that reached out to me had never had any kind of sexuality discuss with them after , say , a spinal cord injury or something like that and had basically given up hope with ever coming in touch with that.

S7: Part of themselves ever again. They just said , Well , my sensation is gone.

S6: I can't hold a sex toy. So that's it for me. Do you think.

S3: That doctors think of that part of a person as just physical ? It's like , Oh , well , I guess you're not doing that anymore. And they don't really acknowledge the fact that it is part of your being and part of our human experience. If you just say that it's physical and now we're disconnecting , that you're taking away a huge part of who somebody is.

S6: Thinking about people with disabilities. A lot of times in some situations , you know , you have gone through this major trauma or this major life change , whether it was the way you became disabled or just how your life has changed because of your disability. And a lot of times with that and with any kind of trauma or major life change , your sexuality can change and flow as well. You know , when I had more normal sensation all over my body that I was interested in and I was more ambulatory and more able bodied , not the same things that I find sexually appealing now that I'm more disabled than I'm a wheelchair user , none of that was being discussed. And so these people.

S7: Are like , Well , I no longer am interested in sex the way that I was having when I was.

S6: Completely able bodied.

S7: So I must just not be into that anymore. That must be part of my disability.

S6: Being in health care as long as I have. I understand why. I mean , if it's just your primary care physician who is experiencing all of these different patients with all of these different comorbidities , sexuality is not the top of their list in Western medicine. I mean , it's just that's not it. We are preventing. Death.

S7: Death. You don't really discuss your mental health.

S6: It's getting better. It's getting so much better. When I do talk to people with.

S7: Disabilities , the only ones that have had some sort of sexual health discussion with the physician men , with the spinal cord injury , who without medication can no longer ejaculate or reach erection.

S6: For women experiencing same kind of sexual dysfunction for possibly the same disability , not so much.

S3:

S7: With my disability , I.

S6: Experience frequent dislocations , and for me , I was a dancer. And so there's no.

S7: Cartilage left in my hips , knees or ankles. My hips , because of the frequent dislocations , have a lot of nerve damage.

S6: And those are the same nerves innervate the pelvic floor. I've had issues with rectal prolapse having to have surgeries from that , living in a place where after that surgery , not having a pelvic floor specialist and so dealing with that. But my main issue has been just the change of sensations. And when I was had less nerve damage , I was into more lighter touches , more softer vibration sensations and things. And as that nerve damage progressed , that is when I started realizing like , I'm not the only person that's going through this.

S7: It's not something that's exclusive to disability.

S6: I mean , when after childbirth , you're dealing.

S7: With the same situation. Yeah.

S6: Relearning what touches and what things I considered pleasurable , even if they weren't necessarily the textbook. This is what sex is supposed to look like. Took me a little while.

S7: To not.

S6: Cope with , but just kind of come to terms with. Does it fit into a box where I'm an easy sexual partner.

S7: That I can just slip in the bed like a fish ? Like that's not going don't work for me. I need a little extra.

S6: Even in the beginning when I didn't know a lot and hadn't done a ton of research as far as the scientific.

S7: Behind that and the nerve damage and things.

S6: I knew if I spoke up , there would be people there who would fall in and say , Hey , I've experienced this too. Here's X , Y and Z , here's how I've been helped. And that's been the biggest blessing for me. And that's why I do what I do. Solutions.

S7: Solutions.

S3:

S7: It's been the easiest. Now that I'm with another.

S6: Partner that is disabled and with other disabled partners I've been with in the past , that kind of.

S7: Conversation about.

S6: Sexual adaptation or.

S7: Hey , I might need something that's.

S6: A little different.

S7: Maybe , you know , my sensation is not that great. My clit you.

S6: Can you go more to inner thighs or something that I can feel better or something like that. That conversation.

S7: Alone has been.

S6: A lot easier with someone who also experiences disability. From then on , I started looking at.

S7: All of my sexual relationships.

S6: A little.

S7: Bit different and going into.

S6: It kind of with.

S7: More of a.

S6: Kid like mentality of , okay , this is.

S7: Supposed to be fun.

S6: This is not supposed to.

S7: Be this chore that I'm supposed to be trying to shove my body into a box that it doesn't fit in its play. It's fine. Yeah , it's play like. Totally open my mind to the idea of what.

S6: We think of as pleasure. I've had a partner that had absolutely no ability to maintain an erection or reach orgasm , and with him , all of his neck and upper body and everything , you could still stimulate a pleasure response where you can almost bring the person to organize. And he's like , This is what I enjoy.

S7: Now in the.

S6: Body that I'm living in now.

S7: And we found ways to kind of.

S6: Adapt and.

S7: Testing like lines of sensation and made it.

S6: Fun and not like a doctor's office.

S3:

S6: I wouldn't even say an orgasmic sense of pleasure. But towards that realm , releasing our ideas that sex is only sex if genitals.

S7: Are involved and that.

S6: You can have a sexual moment by yourself with another partner with lots of partners.

S7: It's just so much more than we were ingrained to think of.

S6: I've spoken to quadriplegics. You absolutely have no motion below their neck. What then is sex and self-pleasure to them ? But there are people with that kind of a locked in. Whatever your disability is that you can go to a place in your mind and you know , it takes work , it takes effort , but so does any kind of a new sexual exploration. It's different and it's just learning a different way to get your mind to that place.

S3:

S7: I just haven't gotten to it yet.

S6: They're vibrators that don't necessarily have a handle like a vibration pad that you can literally sit on.

S7: Anywhere you want if it's on your wheelchair , that kind.

S6: Of thing.

S3: I'm curious about the adaptive sex toys , even the really expensive ones like so a pad that you sit on that makes sense to me.

S7:

S6: The thigh harnesses are really great , especially if you have a partner who might be someone who can't stand from a wheelchair , but your partner is ambulatory and they.

S7: Can climb on.

S6: Top , but maybe you don't. It's harder to put a full.

S7: Strap on on.

S6: Someone who cannot transfer themselves to and from a wheelchair. So a thigh. Harness.

S7: Harness.

S6: Amazing alternative.

S7: Because then the person is right there. You have.

S6: Full access to do whatever your body is able to do while you're still having that. Interaction.

S7: Interaction.

S6: Love anything with a handle mechanism because most of them are kind of just the grab and go. And if you don't have a lot of hand dexterity , that's hard. We talk a little bit about duct taping it to your hands , but that's if we can find ones that have a better grip sensation that those are a plus. My number one is the plug in the wand.

S7: Yes , the wand.

S3: The magic wand or the.

S7: Toxie magic wand is no longer the magic wand. I was like.

S3: A massager. Massager.

S7: Massager. Love that toy. Because it's been around for so long that there are so many attachments that can make it so accessible. And boys like that that.

S6: Have a bit of a stronger motor for people who don't necessarily have the same nerve conduction patterns. Those are those are in my top three so far.

S7: The vibration pads , the Hitachi Magic wand and harnesses , love to educate on positioning wedges or different kinds of pillows.

S6: To help any kind of a.

S7: Positioning issue.

S6: Because with my disability , if I lay on one place too long , something's going to dislocate. So having a wedge to kind of assist with and then absorbent blankets.

S7: That is my other disability sex tip because , you know , you never know what's all going on down there and then you don't have to worry about it. Absolutely.

S1: Answering these questions.

S3: Is there anything else that you would want to.

S1: Say about.

S3:

S7:

S6: Talking about sex and disability is since becoming disabled , my idea of what constitutes sex has been broadened.

S7: So much now as a fluid , queer kind of human , it has always been that way. You can't really say it's just sex if that's not what you're working with.

S6: So just taking a minute and stepping away from the Red Book 17 magazine. Idea.

S7: Idea.

S6: Of This is what sex and pleasure has to look like , that sex and pleasure can be anything from holding your partner's hand in the movie theater and experiencing pleasure from the feeling sensation of their skin on.

S7: Yours to full on whatever you want to do in the back of your bedroom with straps and whips and shake. I mean , this spectrum.

S6: Is massive and I love having conversations with that with people who didn't really think that they could.

S7: A sexual being anymore.

S6: Because of a disability or a life change.

S1: As Javon pointed out , pain and stress can push us to change and adapt. Rachel and Ryan are very different people with different disabilities and different personalities , yet they are both prime examples of people who are able to adapt and continue to explore their bodies and pleasure. And ultimately they expanded who they are open to connect with and how they play. Our bodies will change over time and we may even find ourselves in a place where our bodies function in a more limited way. But sexual pleasure , play and connection is for everyone , and it is what you make of it. As always , keep playing beautifully. See you next time.

S3: Everybody's doing. It is produced and hosted by me , Miss Lolly for Bad for Media. Our executive producer is Parker Edison for Meridian.

S1: Arts and our head editor is the talented.

S3: Chris Reyes. I am so grateful these two don't blush easily. Adrian Villalobos.

S1: Media production specialist. Lisa Morissette is director of audio programming and operations and John Decker is senior director of Content Development. You can subscribe and find our newest episodes on Apple , Spotify or wherever you get your podcasts.

S3: This programming is made.

S1: Possible in part by the KPBS Explore Content Fund.

S3: Have fun out there. Beautiful. And thanks for listening.