Certified Sexuality Educator, Terri Couwenhoven, discusses barriers for our siblings with disabilities getting sex education and gives us some great resources and advice to help us support our siblings who are seeking romance.
Certified Sexuality Educator, Terri Couwenhoven, discusses barriers for our siblings with disabilities getting sex education and gives us some great resources and advice to help us support our siblings who are seeking romance.
Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issue is important to us and our entire families. Thank you for joining us for another episode of the sibling Leadership Network Podcast. Today we will be talking about sexuality, disability and sibling support. I'm joined today by certified sexuality educator Terry Colin joven. Terry, thank you so much for joining us today. Well, good to be here. Could you just start off by telling us a little bit about yourself, your history working in the disability and sex education communities, and what makes you so passionate about your work?
Terri Couwenhoven:
Well, my whole professional life, I have been a sexuality educator. I started out at Planned Parenthood, I worked there for many, many years. And that is a you know, very common training ground for people in the sexuality professions. And then I had just started to do some programming that was unique and specific to people with intellectual disabilities. At the time, there was a lot of movement from institutions deinstitutionalization was going on, and people were living in group homes. And I think people were understanding that that transition from institutions to group homes, required people to have some good solid information, if they were going to be in the community, it was a different, you know, different environments. So. So I was doing a lot of programming for people with intellectual disabilities. And then, in 1989, my first child with my first child was born. And she happened to have Down syndrome. So not something we knew. But it was one of those moments where you just kind of say, well, I guess this is this is what I was meant to do, right? So I already had recognized there was a huge need for help and support in this area for people with intellectual disabilities, for parents, for professionals. So I started specializing, and working exclusively with that population. So that's how it all started.
Chris Berstler:
So what barriers exist within the disability community and society at large to individuals with disabilities advocating for sex education?
Terri Couwenhoven:
Well, you know, we have come a long way. But we there still are issues. attitudes, I think, from the general community, and myths. You know, that belief that people with intellectual disabilities are not sexual human beings, I think we still battle that often on. And usually, you know, usually, it's because these individuals who are supporting people or parents, they're just, they're just not aware, or they haven't had experience. And we know, there's a why there's a big diversity in people with intellectual disability. So this can be very individualized, but the attitudes are still there. So so that myth that people, you know, are asexual, or the other myth, you know, those those people with intellectual disabilities are, you know, their urges, and these are words people have used with me, I'm not just making these up. But their urges are somehow bigger and different than the general population. So, you know, and most of these attitudes, I think, come from people who just don't have a lot of experience or are observing things that aren't what they seem. So, so that's certainly a big barrier. We also know from the literature that staff who are supporting people with intellectual disabilities, you know, often understand that people have rights, but they're just not sure how to support them. And I think that's true for parents too. They're, you know, they're, they know that their kids are sexual human beings, but then things happen, and they're a little stuck, they get stuck, right. So yeah, so we're still kind of dealing with those issues in different ways, shapes or form, but when I look back and see how things have moved forward, we have made gains. You know, as far as resources, you know, in the olden days, I was making up my own stuff, and there just wasn't you know, Winifred Kempton was the only one who had developed a slide series a really comprehensive slide series that was pretty graphic on sexuality, but it viously in different communities, that wasn't always acceptable. So now we have many more resources. I think that's that's one of the gains and there's a lot more people who are doing training in the areas of sexuality. So there's, there's, there's more individuals out there who are interested and active and providing sexuality education, which is great. The more the better.
Chris Berstler:
Are there additional barriers that individuals with disabilities in the bipoc and or other intersectional identity communities face? And what advice or resources can you offer to help them navigate these barriers?
Terri Couwenhoven:
Yeah, that's, that's a really good question, I think depends, you know, your access to resources and how people address sexuality really depends on the community you're living, living in. And we know that, um, you know, they're the, the ableism, I think, is more prominent and dominant in some in some communities. And, you know, when when there is racism and ableism, we know that quality of life outcomes are diminished. So absolutely, I think sexuality sort of moves down to less of a priority when people are living in less fortunate communities. When we talk about diverse identities and sexuality, you know, and we, we know, sexuality is diverse. And we know it's also diverse among the population, and people have intellectual disabilities. But when you start thinking about the general population, and how much support people need, when they're struggling, and trying to move through life, with these diverse sexual identities, we know that people with intellectual disabilities don't always have the same access to support and in my opinion, they need they need more support than the general population. So So yeah, that's, that's tough, um, elevate us as a national group. It's an old colleague of mine from Planned Parenthood, who does a lot of more systemic training for organizations and agencies, and they have a really nice curriculum, but they also have a really nice website with resources.
Chris Berstler:
For sibs, sexuality can be a real cringe topic, what advice do you have for any siblings out there listening who want to help their sibs with disabilities advocate for their sex education?
Terri Couwenhoven:
there can be a wide range of sexuality issues for any individual with intellectual disabilities. And I guess my my best advice would be to just listen and pay attention. And sibs are great at that. So you, you know, sibs are, can be a conduit, between, you know, what they're seeing with their parent, and you're observing all of that, and I think they can fill in the gaps. We know that. So listen, we know listening and acknowledging and feeling heard, are a really important part of supporting people in the area of sexuality. So you know, don't, don't underestimate that listening, and helping your sub feel heard, really important, and then meeting them where they're at, I mean, different people are going to be in different places. So, you know, you may have a sip, who is, you know, really interested in dating, you know, they might express that they, you know, they want to date, but they just don't know how to go about doing that. So one of the things in my professional life that I wanted to do was make sure that people with intellectual disabilities had access to resources that were for them. So, you know, in my world, of supporting people, it was really common, I was seeing that it was really common for them to want to date and that, you know, they have the same needs and desires and that we all have, it's just that they, they move into that world with less information. So I think that's really important to remember. I wrote the dating book, specifically for people with intellectual disabilities, as a way to help them understand what are some really important steps in the dating process? So you know, finding someone, for example, is a huge challenge for the people that I work with. It's really tough, and it's really easy for us to say, well, everybody struggles with finding someone but there's a lot more barriers, I think, for people with intellectual disabilities. You know, they have to deal with the attitudes of the people around them. They have to you know, they in order to find someone, they have to have a an active social life and that in itself, is it Challenge, or a lot of the people that I work with, I mean, they come to the dating workshop thinking I'm gonna find them a date, which, you know, isn't that isn't what the dating workshop is about. But, um, so yeah, there's, you know, access issues for a lot of the people that I work with. So listening, meeting them where they're at, and then being that conduit between, you know, the parent, and you know, what the, what you see the parent saying, and what's what's reality. I think sometimes parents are just overwhelmed and can't always be everything for everybody. I can speak, I can say that as a parent,
Chris Berstler:
I can back you up the same things true, as a sib.
Terri Couwenhoven:
Yeah, yeah. And that's the other challenge, right? Because they're not usually driving. They're, you know, they require other people to support them in making this happen. And, you know, one of the questions you asked me, Chris, was, how can we? How can we support our sibs when we have our own lives? Right. And so one of the things we talk about, and I talk with parents about this, too, is just building your network. Because it can't all be on you. So what does that network look like? And I think we have done a, we're improving, as far as the ways that we're providing long term support for people with intellectual disabilities and integrating sexuality into those support mechanisms. So I think it's, I think that's the other thing that's gotten better. Over time, we talked about resources, but I think support for people with intellectual disabilities is getting better to
Chris Berstler:
Tell us a little bit about what healthy dating looks like for our sibs with disabilities, and what resources or advice can you offer to self advocates and their families around dating and Dave, dating services or apps?
Terri Couwenhoven:
Well, healthy dating for sips looks just like it does for all of us. I mean, we we want people to be in relationships that are respectful, and safe. And you know, boundaries are respected and their shared power. And we want we want all those things for everybody. So when we think about people within, again, that same needs, but less information. So those are things that we often have to teach about. One of the most popular questions when I'm working with parents is, you know, when we look at the general population, the most, the most popular way to find a partner is through online dating or, you know, apps. When we look at how that might work for people with intellectual disabilities, there's been websites, there's been apps that sort of come and go, come and go, come and go. And so I think, and sometimes they're created by sibs. So which is which is great, but I think they don't realize how hard it's going to be to kind of keep those things up, and then they just go away, which is unfortunate. So unfortunately, there's not as many, there's not as much access to those same kinds of ways to find a partner, as there is in the general population, which is unfortunate. So if you are connected, if your SIP is connected to well connected to your community, and you have access to organizations that are supporting people with intellectual disabilities, I think we're doing a much better job at classes and programs that can support people in not only learning about dating, but you know, finding people. You know, I always say to families, you in order for them to find someone to date, they have to have an active social life. And so that is one of the roles that organizations I mean, that shouldn't be on sibs. Right? That is an that is a role of organizations in the community. And I think we're doing a much better job at making sure people are active and supported and have a good social life. So that's a really important first step. You know, if you're, if you're interested in helping your sibling learn, let's say, let's say they're not getting the concept of mutual interest, which is sort of step two in my dating process, right? The first step is finding someone. The second step is really seeing if that person is interested. You might be interested, but they might not feel the same way. And that's a really common I find that for a lot of for some people with intellectual disabilities. There's this assumption that if they really really liked someone that it's mutual, it's automatically mutual. So that filler, that flirting piece is something that they've never been taught or they don't understand. And so we have to, you know, kind of teach that skill. But if there's a concept that you're you're recognizing they don't understand or there's a gap in information there are the National Council on Independent Living, has a video series are really nicely done video series by people with intellectual disabilities for people with intellectual disabilities. And there is one of the videos I show a lot in my classes, which is, you know, what happens if you really like someone, but they don't like you back? Is there something wrong with you? No, I, you know, kind of addressing those feelings. And so, um, and the people I work with really do like videos, I think that's, as far as teaching strategies, it's a visual, they understand it, it's just, it's, it's easy. Sometimes I use Amazon amazed.org is another little short, animated videos of a whole, they have tons and tons of videos, and they're designed not for people with intellectual disabilities. But sometimes I do use them they have a really excellent one on safety in the internet, and, you know, porn, and kind of messages related to porn that that we need to think about. And then there's another agency out of Canada, that has done a series of videos in its real talk.org www dot real talk, real hyphen talk.org. So people with intellectual disabilities, kind of talking about a whole variety of issues related to sexuality. So those are some resources, those are some go to resources that I use all the time. Another one of my favorite resources is the adult Down Syndrome clinic. And Illinois has a great website, it's if you go to the internet, and just type in adult Down Syndrome center resource page, you'll get you'll get you'll get a list of there's professional resources, Parent Resources and resources specifically for people with Down syndrome. So and you know, if you have a sibling with any kind of intellectual disability, though, they'll benefit from that. But they've done some really nice concrete succinct handouts, low literacy handouts for people to you know how to break up what what a healthy relationship looks like. So those that's a, I sometimes use those in my workshops as well. Katie Frank, who's an OT there, has done some really nice, has created some really nice resources. So that's another option.
Chris Berstler:
Tell us a little bit about boundaries and boundary confusion.
Terri Couwenhoven:
Wow, okay. I have a whole workshop on this. a whole lot of reasons why we see boundary confusion and people with intellectual disabilities. And, you know, one Biggie and I think we have a lot of work to do in this areas, when we that whole idea of infantile zation, you know, thinking about people with intellectual disabilities as perpetual children, we, you know, the, most of the people who believe this, don't do it on purpose, but they just, it's just there, and they don't have a lot of experience with people. And so, you know, and I laugh, because I think my daughter deals with this on a daily I think all of our sibs deal with us on a daily basis, and we don't always see it, but we were at Target the other day. And so my daughter is 34. And she was buying a DVD and we got in line. And this cute old woman was checking us out. And she looked at Anna and she said, do want a sticker. She pulled out this little Disney sticker. And, and I kind of looked at me and you know, we kind of have a script. She has a practice grip that she uses. And so I you know, I just kind of shrugged my shoulders. And she looked at the lady, she goes, I'm 34 so, and I'm sure the lady felt bad, but it was that, you know, that sort of ongoing belief that people are younger than they actually are. So, when we believe that when people have that in their heads, it does affect the how we treat people and boundaries. So, you know, in school age population of people with intellectual disabilities, you know, it might look like the teacher is, you know, the hugging piece, they don't deal with any of their other students. But they, you know, it sort of lingers into middle school, not usually in high school. But so some of those behaviors when we're modeling that, it creates some confusion about boundaries for our bar sips with intellectual disabilities, right? In other words, they're experiencing this modeled these model differences in how we interact with people, and it goes on for longer periods of time. Right. So there's, there's some confusion about that. I think the other piece is, and we know this now is there's a model desensitization. So for individuals, for example, who who need more help and support with intimate have intimate care needs. There's people kind of coming in and out of their physical spaces, more often, there's lots more people, and they're doing it more often than you were I would experience that. So that model dissents that desensitization is something that carries over. They do this to me, therefore, I do this to other people, right? It's modeled and it's engraved becomes ingrained. And so boundary instruction, you know, actually has to be taught. I think the other piece is relationship confusion. So, I know a lot of people, I work with a lot of people and everybody's their friend, right? Everybody's their friend. There's no role distinction, or differentiation between, let's say, a paid helper, and, you know, a family member. And so you just sort of treat everybody the same. And so, yeah, there's there's a lot of things that I think contribute to that boundary confusion.
Chris Berstler:
Are there any resources that you can point us to, as far as that's concerned?
Terri Couwenhoven:
Um, well, the most, I think the most popular resource is the circles curriculum, which is a visual way to think about levels of relationships in a person's life. And we can, and now they have a brand new version for elementary school age. So we can start this a lot earlier. But I think, you know, it starts with, you know, my body is in the middle. And then it's the premise of the curriculum is, you know, the less I know a person, the less I talked to touch and trust. So it's sort of it builds on that concept. So that's a really popular one for teaching about boundaries. The other resource I mentioned, the adult Down Syndrome center does have a little video on, you know, you know, my, this is how I touch paid helpers. And you know, they're doing a high five. And it's a very succinct, you know, sometimes when people have too many options is too hard, depending on the level of intellectual disability. So, you know, concrete, clear rules sometimes work better for people. So they have a little video on on boundaries as well.
Chris Berstler:
What is the likelihood that my sibling could get an STD and how can I help protect them?
Terri Couwenhoven:
If they're sexually active, and they're having unprotected vaginal sex bags and Pinoy, flat vaginal sex or anal sex? They're at risk. So the, you know, as far as STD, STI prefer vention. The only options we have are either abstinence or condom use. Just like for the general population, so there is a video on that, on that link. I gave you the National Center Council on Independent Living, they do have a video on how to use a condom, how somebody gets pregnant. Because that's also a really common question that people have, in order to understand birth control and prevention and protection. You kind of have to know how somebody becomes pregnant. So So yeah, condom use. So there's a video on that.
Chris Berstler:
Lastly, in your opinion, how can we as siblings do a good job of supporting our sibs love life, while balancing our own lives?
Terri Couwenhoven:
We talked about kind of meeting yourself where they're at and not everybody wants to be in a dating relationship and have sex. Okay, there's a there's a wide range. But I think, you know, David hangs Burr was a very famous he's no longer with us, but he was a very famous behaviorist and sexuality educator professional out of Canada. One of the one of his favorite quotes that I really like is that, you know, need, the need for intimacy is far greater than the need for sex. And I think for a lot of the people I'm working with, they just they do want and need that, you know, they're human, they have the same needs that we have. They want those human connections, meaningful relationships. And so for different people that that can mean different things. But we did talk about how you how you can support your serve. And, you know, looking at that network and understanding that network of how you can get that support, so you're not the only one providing that you're the only you're not the only one doing the work. I'll call it work because it is work.
Chris Berstler:
Yes, it is. Terry, thank you so much for speaking with us today. Any resources that Terry mentioned today, you can find in the description below. Terry, thank you so much. It's been a pleasure.
Terri Couwenhoven:
Thank you for having me.
Chris Berstler:
Find resources, tools and information about the sibling experience on sibling leadership dot for the sibling Leadership Network is a nonprofit, and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.
Could you just start off by telling us a little bit about yourself, your history working in the disability and sex education communities, and what makes you so passionate about your work?
Are there additional barriers that individuals with disabilities in the bipoc and or other intersectional identity communities face? And what advice or resources can you offer to help them navigate these barriers?
For sibs, sexuality can be a real cringe topic, what advice do you have for any siblings out there listening who want to help their sibs with disabilities advocate for their sex education?
Tell us a little bit about what healthy dating looks like for our sibs with disabilities, and what resources or advice can you offer to self advocates and their families around dating and Dave, dating services or apps?