Shownotes
Lindsey Mullis speaks with Impact managing editor Janet Stewart about the lack of training for caregivers to provide social-sexual supports for people with intellectual and developmental disabilities.
Read her article here: Supporting the Whole Person: The Case for Educating Caregivers
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Transcripts
00;00;00;00 - 00;00;20;08
Janet Stewart
Hi everybody. I'm really excited because we've got a co-host today. Pauline Bosma is the founder and coordinator of the Rainbow Support Groups of Massachusetts. Let's get started.
00;00;20;11 - 00;00;58;18
Janet Stewart
Welcome to Impact the Conversation, a podcast of the University of Minnesota's Institute on Community Integration. It brings you strategies and stories advancing the inclusion of people with disabilities. Our guests are the authors of impact, our long running magazine that bridges the research to practice gap with professional and personal reflections on what matters most in disability equity today. I'm your host, Janet Stewart.
00;00;58;21 - 00;01;24;08
Janet Stewart
Welcome, everybody. Today we're talking about the impact issue on sexuality and gender identity. My co-host is Pauline Bosma. She served as the issue editor, and she also is the founder and coordinator of the Rainbow Support Groups of Massachusetts. Pauline and I are going to be talking with Lindsay Mullis, director of inclusive Health and wellness at University of Kentucky's Human Development Institute.
00;01;24;13 - 00;01;58;05
Janet Stewart
She also, co-leads the UCD Sexual Health Special Interest Group. And with both of those hats on, Lindsay actually contributed a couple of really terrific articles for our issue on sexuality and gender identity. The main article, which she wrote with her colleague Lindsay Swaby. Am I saying that right, Lindsay? Okay. So may, their article called Supporting the Whole Person The Case for Educating Caregivers.
00;01;58;08 - 00;02;35;26
Janet Stewart
Really from their perspective in, in a lot of training that they've done over their careers, as you know, how do we support the people in our lives, whether we are supporting them professionally or if they are family members? How do we support people with disabilities to have meaningful relationships that are romantic, sexual? These are the deepest relationships that we as human beings really have, and they're so important for a lot of reasons for inclusion and for self awareness and self-fulfillment.
00;02;35;29 - 00;02;58;20
Janet Stewart
This is a huge topic that we're grappling with in this issue of the magazine. And so we're really excited, Lindsay, to have you here and to share a little bit about, you know, what what you brought to this article, both from professional and personal standpoints. And, and I know Pauline, who's worked with you before, is excited to to chat with you as well.
00;02;58;20 - 00;03;03;27
Janet Stewart
So thank you both for, for being part of this.
00;03;04;00 - 00;03;06;03
Lindsey Mullis
Yeah. Thank you so much. Excited to be here.
00;03;06;05 - 00;03;40;04
Janet Stewart
Yeah. Yeah. So, Pauline, you know, when you talked, we talked a little bit, earlier about, you know, one of the things that Pauline did for this issue, we have, outside issue editors who are experts in the field really review every article that that is, appears in the magazine. And, you know, Pauline and I were talking a little bit about, you know, what's the essence of this article that Lindsay has written about, you know, navigating these conversations about supporting the person in some of these relationships.
00;03;40;04 - 00;03;52;10
Janet Stewart
And, you know, what? What do you really, Pauline, what really stood out to you about this idea of what can we do to support people? What what are some of those important things?
00;03;52;13 - 00;04;21;02
Pauline Bosma
For me, the you know, what I, what I learned from my knowledge and my that is that the key thing is just having, a network of, you know, family or friends or just somewhere else to talk to, but also somebody that can be like, you can go to and just ask questions about something and not be turned away and be put down or anything like that.
00;04;21;03 - 00;04;41;18
Pauline Bosma
I mean, that's happened plenty of times to me where I've been put down or looked at and talked about behind my back. So, I mean, you know, and, you know, like, I, I, I just wanted to know, like, like, like, how did you like, Come up with the idea for the article?
00;04;41;20 - 00;04;44;01
Janet Stewart
That's a good one. Yeah.
00;04;44;04 - 00;05;00;22
Lindsey Mullis
I mean, it's a great a great first question, Pauline. So I think what, when Janet and I first met and I was giving her all the, the topics, that idea of the, the context and the people that are doing such wonderful work. And it's such an important area. You know, one of the things that that came up was you.
00;05;00;23 - 00;05;32;05
Lindsey Mullis
What what's your unique lens that the take that you have and for me, I am not only a passionate professional, you know, in the, in this field, but also personally, I am the parent to a lovely young lady, Caroline, who is currently ten years old, and she experiences down syndrome and has a vision disability. And so, so often that role of the caregiver is not included in those conversations or in a part of the work that's being done.
00;05;32;05 - 00;05;56;11
Lindsey Mullis
There's so much focus on individual education and and so, you know, that was surprising to me. So as a, as a parent, going to support my daughter who's on the, the, the beginning stages of puberty and thinking through supporting her as she develops her sexuality. You are really wanting to have resources and support, and there's not a whole lot out there for caregivers.
00;05;56;11 - 00;06;20;12
Lindsey Mullis
And then the more I dug into that, the more I realized the, the very, very interesting nuances of that. If it comes from the perspective of a natural support, like a parent or a sibling, or if you're talking about paid supports like a staff member, you know, or a case manager, there's all these different considerations of what that role of the caregiver looks like when it comes to supporting sexuality.
00;06;20;14 - 00;06;41;24
Lindsey Mullis
And so that's really where that that topic came, came together. And the thing I love about my, my co-chair, Lindsay Lindsay, has such an incredible human rights approach to this topic. And I think that you, she and I complement each other really well because I have the the personal passion side. And then she can be you know, bounds at the legal side in the aspect of things.
00;06;41;27 - 00;06;50;28
Lindsey Mullis
And then that's really what we use as the voice of our article and advocating for inclusion of the role of the caregiver when it comes to supporting the whole person.
00;06;51;00 - 00;07;16;29
Janet Stewart
And, Lindsay, you you wrote that, that caregivers can either be critical challengers or perpetuate ers of the myths and negative attitudes around sexuality and gender expression. I thought that was so, that was so powerful the way you said that, like just the importance of of that role. Can you talk a little bit about that and, and how that shows up in your work?
00;07;17;02 - 00;07;43;10
Lindsey Mullis
Yeah, absolutely. I think that so often the caregiver is the catalyst to having positive or negative experiences in, in the world of sexuality for individuals. So in the trainings that I've done with, couple of parents groups, you're an example of the negative aspect is the, the mentality of, you know, what my personal values and beliefs are like.
00;07;43;10 - 00;08;11;29
Lindsey Mullis
That's what they are, and that's what I'm going to impose on the individual with disabilities that I'm supporting and how that doesn't respect the individual themselves. Right. And that that can be such an issue. And the flip side of that is is working to support caregivers who say, I want to support, you know, my child or the individual that I work with in a way that they need and meeting them, and that supported decision making process and how vastly different those experiences are.
00;08;12;02 - 00;08;32;09
Lindsey Mullis
And unfortunately, in my neck of the woods, in Kentucky, I've had more of the oppressive, experiences with some, some caregivers that are really avoidant, that my child has an intellectual development stability. So we're not going to talk about this topic, and I'm not going to work to provide education or social opportunities or even think about that.
00;08;32;09 - 00;09;01;21
Lindsey Mullis
They would want to engage in a romantic, well, and sexual relationship. Or, you know, the individuals that just have their own mindsets or the ways that they want to, view this topic and imposing that on the individuals with disabilities. And so I think that helps me really fuel that fire to provide education and advocacy for how important and critical that caregiver role is to provide positive supports.
00;09;01;23 - 00;09;34;19
Janet Stewart
And, Lindsay, can we unpack that just for a second with Pauline? Because, Pauline, you've you have worked directly with people with disabilities, and I'm sure you've heard similar stories about maybe a caregiver or family member isn't, actively working against this idea or they're not being mean to the person with disabilities. You know, they they truly love the person they they aren't trying to be, backward or, you know, you know, any, any kind of negative influence.
00;09;34;19 - 00;10;01;14
Janet Stewart
And yet just they just don't see their loved one or the person they're supporting as, as a sexual being. Right? You know what what what is how does that come out in your experience for people with disabilities? What does that feel like when you know the person loves you, but you also have a gut feeling that they're trying to protect you from just real life?
00;10;01;14 - 00;10;03;03
Janet Stewart
And that's kind of hard.
00;10;03;06 - 00;10;29;04
Pauline Bosma
Well, I have albums. Yeah. I mean, I have a really good story that I love to tell people, and it's really good because who puts a lot of thought to the to the person when I like it was one of my very first support groups I went to when I started that and the, you know, I went down there and started the group and there was a gentleman who raised this, and he was like, can I ask the question?
00;10;29;08 - 00;11;15;11
Pauline Bosma
Sure. As your group, you you run and you say, what would you want to say? And he and he literally looked at me and he says, what does it mean when I like somebody like me? And I said, you mean another man? He goes, yeah, you know, I said, that means you're gay. Now. At that time, none of his his agency or his people or has anybody within his life, but to answer that question, because like I said earlier, here in Massachusetts, we have the Department of Environmental Service, DNA and, you know, the agency could have gotten in trouble because because the public can say you influence someone saying that word gay.
00;11;15;14 - 00;11;34;18
Pauline Bosma
And and going like, no, you just actual questioning. You're not informing them. But that's been a blockages because people don't realize that you can do those things. You've had those questions and not be get in trouble or, you know.
00;11;34;20 - 00;11;39;08
Janet Stewart
Oh, this is this is a critical topic that Pauline raised that and it's something. Yeah.
00;11;39;12 - 00;11;59;12
Pauline Bosma
I mean, I want to add to it on like one where I, you I was trying to like educate more staff and agencies within your area. Trying a little bit at a time but not overwhelm them. Because I know this could be of what we call.
00;11;59;14 - 00;12;23;21
Lindsey Mullis
All right. Well, and I think too is what I'm learning is it's very unique to the agency, right, that that specific agency that you're working to support and what their policies and procedures are of the individual staff that work there. And then as well as the individuals with intellectual disabilities that are taking advantage of that program or service, if they have a state guardian versus if they have an actual support.
00;12;23;21 - 00;12;54;27
Lindsey Mullis
That and how it is that their values and beliefs play into it. And so what I've learned is that there's not some very simple, all blanket answer, right, that there's no training that everybody can take. And it's going to be wonderful, is you have to really have that individualized approach based on all of those unique environmental factors. And so, what I have done locally for, for me is I completed the the training, the elevator training from Catherine Lofland has, staff and a natural.
00;12;55;28 - 00;13;21;13
Lindsey Mullis
That I would have. Well, parents and sort of staff and a parent training for her program in addition to the individual education. So I got trained in that program as well as in sexuality for all abilities. They have a staff training. So being able to have the two different certifications and being able to pull from, from from those programs and to try to fit into, what can help support what is, what is available.
00;13;21;17 - 00;13;37;07
Lindsey Mullis
Right. And being asked for. But what I've learned is you got to take a little bit. They're not going to let you come necessarily and do this whole, you know, eight hour training or even just the the full scope of the program. But if I can get even just a little bit of time to talk to administration, right.
00;13;37;07 - 00;14;05;13
Lindsey Mullis
Or staff and to support this, or if I get invited to come and do, 60 minute training at a conference, we, my colleague Austin Nugent and I presented at the Kentucky Ending Sexual Violence, conference last December. So having any opportunity that we can to provide education and advocacy and then say and look at all these great resources that you probably had no idea existed, just like, you know, get us in the door to get that conversation started.
00;14;05;13 - 00;14;09;28
Lindsey Mullis
That still counts as a as a huge win, I think, because we have a lot of work to do.
00;14;10;01 - 00;14;43;22
Janet Stewart
And Lindsay following up on on what Pauline was talking about, that that critical moment when somebody says, oh, we you know, it's kind of like, don't say gay, right? Like we don't want to they they kind of accuse you of leading someone with an intellectual disability, for example, down a path. Oh, you've you've made them this way. You've, you've done too much to influence them to be this way at how do you educate people and get them to see that, that that's not what's happening.
00;14;43;24 - 00;14;50;05
Lindsey Mullis
And unfortunately, I have experienced that as a response, on several occasions in, in different settings.
00;14;50;05 - 00;14;56;25
Janet Stewart
And for instance, like how how has that been? I will give us an example of that.
00;14;56;28 - 00;15;29;26
Lindsey Mullis
So, that happened to me in particular in one, caregiver training that we were doing virtually where there was some, some pushback from from some natural supports. I think there was a parent and a sibling that were representing, supporting the same individual that came very hard at me, that this is just a propaganda that all the DSPs and the staff have, that we're going to try to promote, that there's more homosexuality in this population.
00;15;29;29 - 00;15;51;18
Lindsey Mullis
And so in that moment, you know, I said, well, you know, I can understand that you feel that way. So acknowledging that I heard what they have expressed and I said, you but our our time together here is to really focus on these resources and training that are positive supports that are human rights based, and that we're going to focus on supporting individual and needs that, that they have.
00;15;51;21 - 00;16;13;05
Lindsey Mullis
And giving them that expectation of structure as to what it was that we were talking about. And then also coming back with some of the research, there's research that exists out there that, you know, abstinence only is not is not the way to go. Right, that having a more comprehensive approach to sex education is going to be more beneficial.
00;16;13;05 - 00;16;49;27
Lindsey Mullis
There's research that shows that more oppressive and restrictive, opportunities in this topic actually promote abuse and interpersonal violence for folks that are not actual and developmental disabilities. So being able to cite some of that literature is also something that I can use to provide, you know, clout and and support to what I'm saying when I say, I hear your concern, but I need you to know that we're focusing on the individual, and these are the things that we can show in the literature that supports research that really negates this false myth that you're bringing forward.
00;16;49;27 - 00;17;07;12
Lindsey Mullis
And then on occasion, sometimes individuals don't don't, don't care to receive that information. And I I've learned that I have to just make it very clear that our time together is going to focus on what we need to do for positive sexuality. Supports and encourage them to continue being part of the conversation.
00;17;07;14 - 00;17;31;28
Janet Stewart
And Paulina, I'm curious, has has this happened to you? Has did anyone early on, I know you had some negative experiences when you told your family that you are transgender woman, and, and that led to some estrangement in your family? Did did anyone ever try to say, oh, you're not that that you've been, you've been told this by people?
00;17;31;28 - 00;17;34;17
Janet Stewart
Did they ever try to argue with you?
00;17;34;19 - 00;18;01;02
Pauline Bosma
Oh, there's there's been 1 or 2 people I've tried, like, I had a, a, DSS state support person that tried to say, like, you know, she's saying like, you know, you know, trans and this is all just, you know, just pretending there's no one there. And, you know, and I was telling her other things.
00;18;01;02 - 00;18;23;03
Pauline Bosma
I was saying, like, like, hey, at the time I was getting, I was getting constant headaches every single day. And she goes and she goes and you go, well, you know, she was saying, well, maybe the eggs on the pill that you're taking and I said, I said, okay, I'll prove it to you. So I went to my doctor and I said, I said, hey, can you give me up some of my pills?
00;18;23;06 - 00;18;42;29
Pauline Bosma
She goes, yeah, so why? I said, I gotta prove something to my, to my support person. And you know, okay, so my doctor we me off. I was like that. And about a month later I went, I went to go see her and I said, I said, oh, by the way, of all my hormones, I haven't take hormones for about a month.
00;18;43;01 - 00;19;02;00
Pauline Bosma
Oh, and one other thing. I'm still getting headaches now. So, I mean, so when I eat the pill that's giving me headaches, it's just something else. And and I said, I know who I am, and I know what I, when I met with my that I'm proud of it. And I was like that and I gotta go and I, I can't work with you no more.
00;19;02;00 - 00;19;07;18
Pauline Bosma
So I have to say, like, I got to I got to report you to your boss because, you know, I may be me.
00;19;07;21 - 00;19;31;04
Janet Stewart
Wow. And did you, did you do that and follow up and. Yes, yes. Got from you. And so when you have a new, DSP, a direct support professional or someone new in your life helping you out with things, do you have any advice for other people with disabilities and things that you've done to sort of let them know, this is this is who I am?
00;19;31;06 - 00;19;56;00
Pauline Bosma
And just to be upfront and honest, I mean, it's like, like we have, I have a measure. We have, it's called an ISP, a personal progress report, meaning every year for me, it goes over everything that I'm doing over my whole life. Sorry that I've done for about a year. And in my ISP, I. I put that I am a transgender person.
00;19;56;03 - 00;20;12;20
Pauline Bosma
And like I say, because I wanted to let you know, somebody opens a folder and they open up the booklet and they know who I am. They see it that it's there. It's who I am, this is who I am. So I'm not hiding it. And I'm going like, you got to accept me for who I am regardless.
00;20;12;23 - 00;20;40;19
Janet Stewart
And so on. A on a global scale. And it's tough to answer this, I'm sure. But if this information is getting into more and more support plans, is the caretaking field equipped to customize itself and handle that so that someone who really, isn't going to be able to to support that person in an appropriate way, there are other options.
00;20;40;19 - 00;20;49;12
Janet Stewart
Or is the caregiving crisis so dire that sometimes those kinds of things get overlooked?
00;20;49;15 - 00;21;19;17
Lindsey Mullis
And I think that's a that's a tough question. And I think that's really going to be specific to states and systematic approaches to really knowing what the result would be from staff turnover and the issues there with being able to have access to to staff. But I think, Pauline, thank you for sharing that. An incredible story. And I think the the other thing that I was coming back in response to that is having an appropriate part of staff training that acknowledges those personal beliefs and values.
00;21;19;17 - 00;21;47;04
Lindsey Mullis
So that's a part of some of the trainings that I've done, is acknowledging what somebodies thought processes of what what they believe that they bring to that table and acknowledging what that is, and then recognizing that from a paid staff perspective that now needs to go on a shelf because that's her personal beliefs, and you're here to support the individual, and we're going to meet them where their needs are and where their supports are needed, to have that positive interaction.
00;21;47;04 - 00;22;15;18
Lindsey Mullis
And I think recognize that for some staff that is doable and for some that that might not be a possibility. And then recognizing it's not just that individual level, but also the environmental and systematic approach from the agency and how there needs to be policies written in place that that's the expectation, right, that we're going to recognize the individual and their needs and the things that they're representing and going to honor that.
00;22;15;20 - 00;22;27;29
Lindsey Mullis
And if that's an expectation from the top down, then the support staff is going to be more supported to be able to support the sexuality positively of the individuals on their under their care.
00;22;28;01 - 00;22;33;08
Janet Stewart
That's great. And can you tell us a little bit about how and why you wanted to start the special interest group?
00;22;33;12 - 00;22;53;17
Lindsey Mullis
Well, I did, I will say didn't start it, I joined it, when we had a site visit in Kentucky from Indian Parata. Was that used to be director of the time and, the pleasure of meeting him and having a conversation with him. And I told him that I was interested in the topic of sexuality, and there was no funded projects in Kentucky, but I did what I could on the side.
00;22;53;17 - 00;23;13;04
Lindsey Mullis
And he said, oh, you should check out the special interest group. And so I started to join the meetings. And at that time, Julie Atkinson, was was leading that with Rebecca from Alaska. And I really enjoyed getting to connect with this network of other passionate individuals. Some of them are professionals and the network, but there's also self-advocates.
00;23;13;04 - 00;23;40;09
Lindsey Mullis
There's individuals that are doing work in the field that aren't associated with you said. And so it was just a really great way to learn about the work being done in this community and connect with others. And then as time went on and Julie needed a partner, she asked me to to join, join the ranks with her. And that was an incredible opportunity to get to be a part of the sexual, talk, sex talk for self-advocate webinar series that we did that spanned over several years.
00;23;40;11 - 00;24;01;22
Lindsey Mullis
And all of that was informed by surveys that were sent out nationally for Self-advocates to ask questions. And so that was an incredible project that was done. And then as as Julie retired, that's when Lindsay joined me. And we've we've worked over the last little bit to expand topics on on internet safety consent. It's been a really big thing that people have wanted to focus on.
00;24;01;22 - 00;24;15;28
Lindsey Mullis
But what I love most is just the network. The listserv is incredible. If somebody has questions about something or they need help with sharing a resource, different kinds of things, it's it's just a great network of folks to connect with.
00;24;16;00 - 00;24;34;22
Janet Stewart
And there have been, some strides in getting more information out there. There's there's certainly some podcasts now. There's disability after dark. There's there's some that are really getting some traction. Do you, do you listen to any of those? Do you are you excited about that? Is it is just more better. Is, is that as they say?
00;24;34;24 - 00;24;52;13
Lindsey Mullis
Yeah. There's so much great work going on in in this field of sexuality and disability. I just wish that it was less siloed. There's a lot going on in a lot of different pockets and in different areas. And the networks are a great way to stay connected. But then there's still a good handful of folks doing great work that aren't a part of the network either.
00;24;52;13 - 00;25;10;28
Lindsey Mullis
So I wish that there was a a national entity that can take all the wonderful things that are happening and put together a clearinghouse library of resources that we could then use to our disposal. That would be that's the dream. That's the pipe dream right there to be able to know all the cool things that are happening.
00;25;11;01 - 00;25;19;12
Janet Stewart
That's wonderful. Pauline, any other questions on your mind for Lindsay?
00;25;19;14 - 00;25;40;16
Pauline Bosma
Well, I mean, I will, you know, like, if you ever need input, I would love to give you more than anything that you're doing. If you want my help or, you know, I'm always I'm always looking to. And, you know, I, you know, I just want to like, like, like one thing that I want to just, by that I really question is more like.
00;25;40;19 - 00;26;01;09
Pauline Bosma
So I live in Massachusetts. I work, you know, like the engine that I work for is called mass survivors. And it's wrong and they're upset, and they and they get funded by the state. And with that, and, you know, there are all, you know, the director of the program who is always telling me it's going like, well, you know, you got to work within Massachusetts.
00;26;01;09 - 00;26;32;27
Pauline Bosma
And I'm going like, yeah, but there's a whole world there of. So advocates that need to know what's going on, not just Massachusetts. I mean, because you got other parts of the world going on and they all have the same issues. They're all talking about the same thing. They're all discussing it in their own format. So we kind of like, how do we get those dots connected to each other, you know.
00;26;33;00 - 00;26;38;15
Janet Stewart
Kind of like Lindsay said with the silos. Right. And you're talking about the state limitations. Yeah.
00;26;38;17 - 00;27;14;23
Lindsey Mullis
What do you and I think to follow that up, Pauline, is too is normalizing sexuality, I think is so important. So recognizing that even in some of the work that, Lindsay and I have done in the past with The Stig, we have to delicately navigate sometimes using the word relationships or healthy relationships instead of calling it what it is, and understanding that sexuality is a spectrum of all of these different topics that can include so many different things, but just the act of intercourse or how somebody expresses themselves or what gender they are, all of these different things are so, so intertwined.
00;27;14;23 - 00;27;22;23
Lindsey Mullis
And I think we can normalize sexuality. That would also be an incredible way to start to connect those dots.
00;27;23;00 - 00;27;43;03
Janet Stewart
And along those lines, I loved what you brought up in your article about just the concept of self-pleasure. No one really talks about that and disability. So that's another one too. And it's a great segue into the my final question, which was, you know, you also wrote a lovely personal story about being a mom and thinking about all of this as you raise your three daughters.
00;27;43;03 - 00;27;45;00
Janet Stewart
Can you talk a little bit about that?
00;27;45;05 - 00;28;10;02
Lindsey Mullis
Actually, I am really proud of my my little kiddo. She just this past week expressed her body autonomy and she just turned seven. And so getting to witness her as a child expressed to a family member at a holiday event. An adult family member that was male. I'm not in the mood for a hug right now, and my body is my choice if I don't want to do that.
00;28;10;02 - 00;28;28;07
Lindsey Mullis
And I was just so proud of her, so, so proud of her. And so I think, you know, again, with, with when in that moment I was the only adult, I think, in the room that was proud of her. Everyone else was taken aback of like, but that. No, you should give a heart. No, it's her body.
00;28;28;07 - 00;28;54;27
Lindsey Mullis
And she was so polite and firm. And to know that I think sometimes I talk to my kiddos and I explain things and this topic, and I try to do it appropriately. And especially with Carol, I know that she's such a visual learner. With her disability, you can try to find ways to provide information in a way that I know she can absorb it, but we don't necessarily have great conversation like we're having today on a podcast.
00;28;54;27 - 00;29;17;17
Lindsey Mullis
But to know that they're still hearing those messages and they're still understanding and respecting that, like even just the other night at the dinner table, we were talking about how girls can have long hair or short hair and boys can have long hair or short hair, and that's that's a choice that they can have about their bodies. And something as simple as that is still teaching respect for someone else.
00;29;17;19 - 00;29;29;09
Lindsey Mullis
And that just makes me really, really proud as a as a mom. And also as a passionate professional, to know that these are the kinds of conversations that we need to be having.
00;29;29;12 - 00;29;32;14
Janet Stewart
Pauline, what do you think about that? You know, when you think about.
00;29;32;16 - 00;30;03;08
Pauline Bosma
Yeah, I think that that's very important because, you know, I didn't really have the opportunity to learn about sexual education or learn about anything because, you know, I'm not my mother was a, you know, depression that she grew up in the Great Depression. And by the actual back then, they they didn't talk about body or sexuality or gender or anything like that because they didn't want to hear it like that.
00;30;03;08 - 00;30;30;08
Pauline Bosma
And it's like, they don't we don't quack. Well, that is you know, so, you know, and, you know, I just saw where, like, like it was on I think it was on a news program, something like that. And then when talk there were talking to, doctor Ruth, you know, where she just, I, I think it's just sort of like 90 years old or something like that, you know?
00;30;30;10 - 00;30;50;00
Pauline Bosma
And here she is. She's still active and talking about sexual health and sexual relations and the like. And this is a woman that recently got the topic on TV to talk about it and going, like, here we are now we're trying to get out there like that. So, you know.
00;30;50;03 - 00;31;04;18
Janet Stewart
Yeah, I, I haven't thought about Doctor Ruth in a long time, but maybe that's the kind of example, Lindsay, where, where we do need to break through and, and go into those more mainstream, kinds of conversations. Right.
00;31;04;20 - 00;31;10;17
Lindsey Mullis
Well, I think that's an excellent idea and an excellent role model for us, Pauline, to model ourselves after.
00;31;10;24 - 00;31;31;02
Pauline Bosma
Yeah. Well, I mean, I would like to just sit, you know, like, like, just ask the question until and say, like, you know, like, like ask her a question, like, how do you think we've I know what she's not. You know, we act like, look how far we come, but look how far we've also gone back to.
00;31;31;02 - 00;31;35;29
Pauline Bosma
We've gone forward a little bit. We also go backwards now. So I mean I understand that.
00;31;35;29 - 00;31;55;17
Janet Stewart
And so that and that was a lot of our issue wasn't it, Pauline. A lot of the articles that you reviewed that we all reviewed for, for the issue talked a little bit about that backsliding and, and the fact that we're all getting a little more uncomfortable talking about some of this stuff. And any other final thoughts on that?
00;31;55;17 - 00;32;03;24
Janet Stewart
Just the the idea of, you know, what the field needs to do to bring out some more of these conversations.
00;32;03;26 - 00;32;27;08
Pauline Bosma
And for me, I just think keep on talking about it. And translate, you know, like, people might come around, but, you know, you gotta you can't. One thing I learned, you can't force it on anybody and you can't. You gotta let them go at their own pace, you know, let them fill it out and I'm not gonna sit there and enforce anybody and say, hey, you don't want to listen.
00;32;27;12 - 00;32;35;13
Pauline Bosma
You don't want to listen. Don't don't be, Oh, yeah. I, so it was, you know, my back, you know, want to be I don't yeah.
00;32;35;15 - 00;32;52;08
Janet Stewart
I that's great. Lindsay. Any other final thoughts? It's just been so good to, to chat with you about all this. Any, any other thoughts on, supporting people with disabilities in their sexual lives and their gender identity?
00;32;52;11 - 00;33;24;06
Lindsey Mullis
Yeah, I think that just making sure to involve the full scope of the environment for the individual. So what does that look like? What is what is the caregiver role or what is the the the role and the policy procedures at the agency? Going back to a lot of things I talked about today and thinking through all of those intersectional points, because if we just focus on the individual and providing them with support to advocate for themself or to acknowledge, I think you're talking about the individual, your your, work group or the, support group that you have.
00;33;24;06 - 00;33;42;23
Lindsey Mullis
Pauline acknowledging, asking those questions and having a safe, trusted place to be able to do that and really focusing on that bigger, bigger scope than just individual education is really going to be key, because I don't think we can be successful if we don't consider all of those access points.
00;33;42;26 - 00;34;03;10
Janet Stewart
I want to thank you. Pauline, I want to thank you, Lindsay, for sharing. Really, your life's work, both of you, with us. It's given us a lot to think about and a lot to act on, and we are just so pleased to have you both, contributors to this issue of impact. You really made a difference. So I want to thank you for that.
00;34;03;12 - 00;34;39;14
Lindsey Mullis
You know, thank you so much for the opportunity. And I and following up, the last thing that Pauline said, one of my favorite things when I get to talk on this topic is to have a picture of Caroline and her sisters in my presentation slides, because I want to express that as a parent, I have the same expectations for Caroline as I do or Marcel any for the fact that that she's going to have romantic relationships and experience heartbreak and, and all of those things, like, I want them to have those same experiences, but recognize that as her caregiver, she will require some different supports to be able to do that successfully or positively and
00;34;39;18 - 00;34;44;25
Lindsey Mullis
want to take that responsibility seriously. So I just wanted to leave that. That's great, isn't it?
00;34;44;29 - 00;35;09;22
Janet Stewart
Like how as a parent who your first instinct is to protect them from the bad things that Pauline talked about, that every, you know, that we all know can happen? So how how is that for you when you do think about. Yes, you want these experiences for all your daughters, but there there might be. We could certainly understand and forgive if you are a little overprotective of Caroline.
00;35;09;22 - 00;35;12;07
Janet Stewart
So how do you get over that hump?
00;35;12;09 - 00;35;34;26
Lindsey Mullis
That's a great question. I think for me, my perception on that is that, you know, we learn from those mistakes, right? Those heartbreaks, those kinds of things are how we learn and grow for ourselves. And so you probably smile and shake our head. So if we never had those opportunities for growth, then there's so much more that we need to learn.
00;35;34;27 - 00;36;07;18
Lindsey Mullis
So being able to recognize the value in in those moments, but also acknowledge that individuals with intellectual disabilities are seven times more likely to be sexually assaulted. So knowing that teaching about sexuality and being that safe and trusted place for my for my kiddos or for any individual that I am supporting and helping them find that is so critically important, and teaching those skills about body and harmony and autonomy and abuse reduction is an important part of the conversation.
00;36;07;18 - 00;36;30;04
Lindsey Mullis
Because if I only focus on the positive things and don't support them to be prepared for the negative or for the scary, then I'm just setting them up for for having more failure or for having a more negative experience. So and I learned that very early on when I started in this topic, Pauline, the very first time I presented on this, I was like, I'm only going to have positive sexuality and talk about it in that way.
00;36;30;08 - 00;36;32;29
Lindsey Mullis
And I very quickly learned this and.
00;36;33;02 - 00;36;34;09
Pauline Bosma
I got.
00;36;34;11 - 00;36;39;14
Lindsey Mullis
You can't do that. Nope. You got to acknowledge the challenges to be able.
00;36;39;15 - 00;37;01;06
Pauline Bosma
I mean, I, you know, like like when I was growing up, you know, my mother, I was I went to school and I went home then didn't do any clubs. And when I chose groups or anything like that because my mother just wanted me to stay home, she didn't want me to do anything. And, you know, and I didn't, I didn't learn how to socialize.
00;37;01;10 - 00;37;26;14
Pauline Bosma
I didn't learn how to do anything because it's like I, you know, I'm so learning to socialize and how to be around people. I mean, I could be around people. I could talk to people. But somewhere along the day, I'm going to go like, okay, I got to go get some alone time. So I'm going to go run outside and I'm going to go be by myself for, for, you know, a little while to get some fresh air or whatever, but because I can't take it, you know.
00;37;26;14 - 00;37;27;09
Pauline Bosma
So yeah.
00;37;27;11 - 00;37;28;28
Janet Stewart
Pauline just carry, just.
00;37;28;28 - 00;37;30;01
Lindsey Mullis
Kind of learning. Yeah.
00;37;30;01 - 00;37;41;05
Janet Stewart
Just curious. Pauline, did you, do you feel like when you started expressing yourself more fully as a woman, that some of that socializing got easier?
00;37;41;08 - 00;38;09;08
Pauline Bosma
Yeah. Because, because I, I, I went to a therapist once by a transgender therapist a long, long time ago. And he he gave me a really good analogy that I like to use once, while I use it all the time. You know, I told them I was trying to generalize or cross-dressing, whatever, and I said, you know, when I would get dressed up, I would be relaxed, my brain would be calm down.
00;38;09;08 - 00;38;31;22
Pauline Bosma
And it was like that because it would be as blunt. And I said, I can, I can go by dresses and by all this stuff. But then a month later, I'm going to be throwing it all away and buy a new stuff, you know? And he said to me, he said it. He said, he said it. And who you are is in your DNA as part of your genes.
00;38;31;22 - 00;38;59;22
Pauline Bosma
It's part of who you are. And I kind of, you know, took that for granted that I said, he's right. It's part of who I am. I'm not I can't I can't change the brain. So I to change the body, to match the brain. Now I kind of figured it out, you know, I was like, okay. And as I started getting dressed up more, my brain kind of like, relaxed and I wasn't as nervous and tensed up and going like, oh my God, what am I doing?
00;38;59;25 - 00;39;19;27
Pauline Bosma
You know? And it just made me feel better, know. So, you know, but I had to learn now, you know. And there was, there was no way to show me how to, you know, like like how to buy certain things. I'm going like, I don't know, you know, like like I went to a friend of mine. I said, how do I how do I get a how do I get a bra?
00;39;19;27 - 00;39;34;16
Pauline Bosma
Well, I go, well what do I do? And she said, I'll take you out. So she took me a version because she wanted to help me, you know, but I didn't have anybody else to help me. You know, I get to know these things. Yeah.
00;39;34;18 - 00;39;35;28
Janet Stewart
Perfect. Perfect.
00;39;36;05 - 00;39;36;18
Pauline Bosma
Oh.
00;39;36;20 - 00;39;59;07
Janet Stewart
Well, thank you so much. This was. This was beyond expectations from both of you. I really, really appreciate you, Pauline helping me co-host. And Lindsay, as always, just from start to finish. You were so terrific, for advising this issue. I just really want to thank you for that. And and I hope we'll stay in touch and come back sometime and, give us an update on on both of your work.
00;39;59;10 - 00;40;06;10
Lindsey Mullis
Thank you so much. It's my pleasure.
00;40;06;13 - 00;40;16;22
Janet Stewart
Thanks for joining the conversation. If you'd like to reproduce all or part of this podcast, please email ISI pub at n.edu.
00;40;16;25 - 00;40;44;08
Pete McCauley
Our show is co-produced at the University of Minnesota's Institute on Community Integration by Impact managing editor Janet Stewart and AISI media producer Pete McCauley. Skyler Mihajlov is our editor. Graphic designers are Connie Burkhart and Sarah Curtner. For more information on the Institute and all of our products and projects, please visit ICI. NZD.
