ANCOR Links: Season 1, Episode 10

André Floyd

Hello and welcome to another episode of ANCOR Links. I am your host, André Floyd, and I am the communications manager here at ANCOR, and of course, podcast producer. It is Valentine’s Day. Happy Valentine’s Day to you and yours. For this episode, we wanted to do something a little bit different. We know that Valentine’s Day means, you know, love, Cupid, all of those things that are discussed around this time of year. Flower sales boom, and chocolates, and all of the things that you normally get from Valentine’s Day, all of the gifts, all of the love that is shared and showed for, I guess, I guess for people who have like, you know, that’s their love language. The gifts, the affection, all of that. Well, we wanted to take a look at it from a bit of a different lens here at ANCOR Links. We believe and have always intended to do with this podcast to show things through a little bit of a different perspective. So, for this episode, we brought on Erica Thomas from RCM of Washington here in Washington, DC. She is going to join us for a conversation or really more of an explanation of a really fun program that she put together to help people with disabilities like Ashley, who you will hear from in just a second. Erica speaks with Ashley, who’s a person with disabilities, who went through the program and has quite some interesting and good words about what the program meant to her, what she learned through it, and how she learned to advocate for herself in a number of settings. So it is interesting, I’ll say, that when we think about intimacy, when we think about these sorts of things on a day like this, most of us typically think about it from the most popular viewpoint, the most popular lens, the commercials that prompt you, the jewelry commercials that prompt you to tell you what love is, the Hallmark movies, all of those things. But when it comes to body autonomy, when it comes to consent, when it comes to intimate relationships, whether intimate means an intimate romantic partner, or whether it means somebody who, like a direct support professional, is supporting a person with a disability. Depending on what they have to help them with that can also to require some level of intimacy or at least discussion about intimate topics or things. And so we brought Erica on because she is an expert at talking about it and so much of an expert that she put together an entire program. It is called the My Body, My Choice program and it is fantastic. So first up, we are going to hear Erica and Ashley talk about the program itself, what Ashley learned in the program, and then we’re gonna come back and really just talk to Erica about why she decided to develop this sort of program and also all the different components of the program itself. So it’s going to be a bit of a different episode, but we hope you stick through till the end because there is so much there to think about when it comes to these topics with people with disabilities, and we think we got one of the best people to talk about it on this podcast. So, without further ado, here is Erica and Ashley to talk about what the My Body My Choice program meant to her.

Erica Thomas

Hey friends, my name is Erica Thomas and I am here with Ashley Anderson. And we’re gonna talk to you today about the My Body My Choice program. So I would like to give an intro for Ashley. Ashley is 30 years old. She lives with her two cats, three birds. And when she lets her in the house, her mom. She enjoys books and her book club. She loves a Starbucks coffee. She likes to cook. She loves board games, dancing, going out into the community, listening to music and learning new things. You’ll see when we talk today that Ashley uses her iPad to help her with talking and communicating. And she answers yes or no questions that are asked of her. She’s been working with RCM and me since 2023. And then I’ll give you a quick intro about myself. I’ll tell you a bit about myself. My name is Erica Thomas and I’m the education and outreach manager at RCM of Washington in Washington, D.C. RCM is a disability services provider and we’re located in Washington, D.C. and we provide an array of different supports for folks with disabilities. And our goal is to help people to live their best lives and to be valued members of their communities. I’ve been providing supports to folks with intellectual and developmental disabilities for over 15 years. So pretty long time. And speaking about the My Body My Choice program, I came up with this idea because I was hearing a lot from advocates about their different experiences when they’re out in the community. Ashley, can you tell us about some of the important things that you learned in the My Body My Choice program? Done. Learning about sex and that it is normal. Learning about my rights to have people touch me or not. Learning I have a right to privacy. And Ashley, can you tell us a little bit about what… you liked learning into my body my choice program?

Ashley Anderson

Sure. I liked learning that I had the right to say stop.

Erica Thomas

Is there anything else that you wanted to share?

Ashley Anderson

That I can make my own healthy choices. I make all my doctors ask my permission before they touch me.

Erica Thomas

And so Ashley, did learning this information make you feel more confident?

Ashley Anderson

Yeah.

Erica Thomas

And do you think that you use the information that you learn in your everyday life?

Ashley Anderson

Find someone like Erica who believes disabled people have a right to their own bodies and choices. Ask them to teach you everything you want to know.

André Floyd

You heard Ashley get somebody like Erica to teach you these things. And listener, luckily for you, we have THE Erica Thomas that you’re gonna continue to hear from throughout the rest of this episode. What’s coming up next is I really was interested in hearing from Erica about what kind of prompted this development of this program. You know, she mentioned it a little bit, but I think there’s definitely a lot more to be said because it is a deeper topic. It can be taboo in some spaces. It can be something that even family members are not comfortable with speaking about, but there are so many benefits on the other end. One, not only just for the whole person and an entire, a person’s entire being. Intimacy is a part of that, but there’s also a major advocacy component. And teaching and… Being able to facilitate people with disabilities and being more confident about themselves, taking ownership over themselves and their body will help with other interactions as well. And so I really wanted to hear from Erica about all of the reasons why this program and developing this program was so important, even from some areas where it may seem obvious in terms of intimate relationships, but also some areas where it might not.

Erica Thomas

In thinking about developing the My Body, My Choice program, you don’t see a lot of sexuality education out and about, especially when supporting people with disabilities. And so a lot of times I find folks are receiving a lot of misinformation or just, I guess, maybe a lack of information. And then looking at the much bigger picture, people are uncomfortable with talking about sex and sexuality and, you know, all of these things, private parts and all, people just aren’t comfortable with it. And I feel like I could sit and talk to you all day and tell you stories about, you know, what the people that I support, what they were told about sex and sexuality, you know, I’ll give you a quick one. I was told by a person that I support that someone told him to lubricate a condom that you use butter, right? And so, you know, this misinformation, lack of information, or just not being comfortable talking about the topics, you know, I wanted to make sure that people are getting clear and correct information about these topics. Yeah, should I keep going? I have a couple more points. I feel like loneliness and isolation are also driving factors as well, and you know, why I wanted to make sure that folks got information about their bodies and advocating for their bodies. I mean, just like, like think about it. A lot of times folks with disabilities are told what they can’t do. They’re told they don’t look a certain way. They don’t act a certain way. They don’t dress a certain way. And they’re told that they aren’t smart enough and just that they aren’t enough. And just sit for a second and imagine how that would make you feel if you heard that, you know, time and time again. Right. So, you know, hearing this and feeling this, it further isolates folks with disabilities from other people. So when it comes time for people to look for a partner or a friend, whatever that looks like, they already kind of have these preconceived notions that they aren’t enough. And I find a lot of times with folks that I support because they have these preconceived notions about themselves, because they feel like they aren’t enough, they choose people who might not be a good fit for them or they might not be the best person for them. And so like in turn, they settle basically for someone who might be mean to them, someone who might…you know, talk to them a certain way, might treat them a certain way because this person places value on that person. And even though it’s not in a positive way, it’s like finally there’s someone who’s giving them attention, someone who wants to be in their lives, right? And people with disabilities, just like everyone else, they want to be seen as desirable. And I mean, sometimes it looks like attention, even if it’s negative attention is good attention. So I wanted to make sure that folks knew their value. I wanted to make sure that folks knew that they are, you know, that they know that they are enough. Are you enough, Ashley?

Ashley Anderson

Yeah.

Erica Thomas

Yes, you are.

André Floyd

And that’s the empowerment approach that Erica really took with the development of this program. And as you’ll hear, she talks through the components of the program that it really comes back to empowerment of and ownership of one’s own body. And that comes in many different forms. And so one of the first ways that she went to approach this was to take the first component and send it around. Bodily autonomy, why it’s important, and also to have a discussion about vocabulary, to kind of remove some of the taboo nature of the discussion so that people can actually have a way to discuss these things, whether it is in a romantic setting or otherwise. Say if something perhaps isn’t right, you still want to have them be able to have the vocabulary to be able to voice a concern, to be able to say no, or to be able to say that’s not right. Because that is all part of empowerment as well. So I wanted Erica to really speak to that first session, why it lays a great foundation for the rest of the program.

Erica Thomas

And our first session, we did an overview of body autonomy. And so in this particular section, we define body autonomy, its history, and how it has its roots in the feminist movement and how it applies to marginalized populations. We had conversations about respecting people’s adaptive equipment and how it can be viewed as an extension of a person’s body. We also talked about how body autonomy is a right and that we all have a right to decide what happens to our bodies. We talked about people with disabilities and how they experience more physical and sexual violence than their non-disabled peers. We also learned that we are in control of our bodies. In knowing this information about ourselves and about our bodies, we know that we are in control of our bodies and we are more likely to tell someone if we experience any sexual abuse or if any, you know, even in a situation with the doctors, right? And doctors not asking permission before they touch so we can advocate for ourselves. Then body autonomy teaches us how to respect our bodies, and in turn teaches others how we want our bodies to be respected. The second session we did was called All About Me, and this covered anatomy and private parts of the body. So we spent a lot of time correctly identifying the different parts of the body, especially private parts, and then we practiced using anatomically correct language. We also identified private parts of the body. We talked about setting body boundaries. And when we talk about body boundaries, that means, you know, who can touch our bodies in half? And this topic around like anatomy and private parts is especially important because sometimes people do not know the proper names for body parts. And like people sometimes have nicknames for body parts. I’ll share like a really quick story with you. Um, a while back I was teaching a sexuality education session and this session was for adults who were providing direct care to people with disabilities. And so we were talking about private parts and all, and of course the word vagina came up and like this woman, she was just like, what do you mean a vagina? That’s called your pocketbook. And I was like, what? And she was like, you have to protect your pocketbook. And it’s just like, I, for a split second, like I had no idea what she was talking about. I’m like, do I need to like go and get my pocketbook? Like, do I need to be aware of my surroundings? Like what’s going on? But saying pocketbook and that being the word that she used for vagina. And if she’s teaching people that she supports that this is, you know, your quote pocketbook, if someone is inappropriate with them, if something, you know, if they’re in pain, if something hurts, if a doctor is performing a procedure or whatever else and they say, you know, my pocketbook, it might stir some confusion. So I wanted to make sure that folks knew proper body parts. And if people choose to have these conversations and use slang language or nicknames or whatever else, that’s cool. But making sure that they knew proper anatomy and proper words for their private parts. As mentioned before, a big part of learning a lot of this is not only for facilitating healthy, intimate relationships and allowing people with disabilities the space, the freedom to be able to do such a thing, but also it is a massive part of advocacy, self-advocacy as well, even in a setting such as perhaps a doctor’s office. We know that sometimes, and we have seen this and heard this as well from many people with disabilities, that doctors will not speak to them. And that even goes further to where sometimes a doctor will just touch them or get whatever procedure started without first asking if they can, announcing their intention, all of those things, because they assume a lack of understanding. And so that also is a really big portion of this program.

André Floyd

So. This next section is really important for a number of reasons. Of course, the intimate partner relationships as well, because it all centers around consent, but consent in multiple settings. And in the My Body, My Choice program, Erica covers it all.

Erica Thomas

Consent was broken down into three different sessions. So we went into doctor and patient relationships. We talked about relationships of choice. And then we also talked about intimate relationships of choice. And notice their relationships of choice because people with disabilities do have a choice. They have a choice which doctors they choose to go to. They have a choice in which intimate relationships they choose to have. They have a choice in friendships, relationships and whatever that looks like. So folks do have a choice. And within these three consent topics, we also explored appropriate friendships, what intimate relationships look like, and we also talked about LGBTQ+ relationships as well. We have a partnership with Georgetown University and that partnership, and within that partnership, we have Dr. Kim Bullock and she gave them some tools and taught them how to advocate for themselves when being seen by a physician. And then when we were learning about relationships of choice, we learned about consent, how important it is to gain consent. I think that when we were talking about consent, I feel like the most shocking part when we had this conversation was that people didn’t know that consent means stopping at any time. So it doesn’t matter how far you’ve gone with any particular act or whatever you choose to do. If you wanna stop, no means no, and that the other person should respect that, right? Should the person respect that, respect your choices? Yeah, we talked about how to give consent. And so even if someone doesn’t communicate with words, we talked about what that could look like, um, to, to how to give consent. We practice communicating yes and no, um, as well. We talked about intimate relationships and we explored like understanding the importance of giving and obtaining consent, consent and intimate relationships. And so when we’re talking about consent, as far as like intimate partners, it can look like people who are intimate partners who we’re having sex or engage or who we are intimate with. But it also can mean people who receive direct supports and direct care from someone else because you know, they are, you know, touching intimate parts of a person’s body and they need to ask for permission before they touch. It’s like this concept around, you know, setting body boundaries, and what that looks like is very important. We talked about who we can talk to, we talked about who we could ask for help. And then Dr. Bullock, she facilitates a program called Community-Based Learning at Georgetown University. And this is where first-year medical students learn how to interact with folks with disabilities and how to provide supports for people with disabilities. And so along with local advocates, I help facilitate a series of listening sessions where people support it. They’ll have space to share their thoughts about what doctor and patient relationships should look like and what they mean to them. And then one of the major points from advocates has to do with doctors just touching them and not asking for permission. And doctors do procedures and then think about pap smears, for example, and you’re sliding yourself down to the end of the seat like a little more, a little more, and that can be a little unnerving, right? And then something is going inside of your body and that might be painful. So people support it. They were saying, my doctors are performing these different procedures on me. They’re not asking for my permission and they’re not telling me what they’re doing. And so it was great having that conversation with Dr. Bullock. And I feel like she really, really empowered folks to, you know, to advocate for themselves and to advocate for their, for their bodies.

André Floyd

The conversation about consent of course leads into a bit of a more difficult subject so before this next piece I just want to go ahead and issue a content warning we are going to discuss the possibility of sexual violence so if there are any sensitivities of course please fast forward is it about a couple minutes long once you distill experience the full episode but understand about sensitivity so fast forward if this is an aspect of the conversation that you are not prepared to listen to at the moment for whatever reason. So what Erica wanted to do in talking about this and why it was so important is to make sure that people with disabilities understood what it was like to be treated properly and improperly. And this goes back to also the vocabulary portion of it that we talked about a couple segments ago.

Erica Thomas

And giving the not only bodily autonomy, but given the words to actually say, this isn’t right, this is something that happened to me. We wanna make sure that you can actually report it to somebody, tell somebody, do something about it so that it does not continue. So this is a really important piece, a difficult piece, obviously, but a really important piece to the program. This one was a tough session to go through because so many people in the disability community have experienced trauma and that trauma could look like sexual violence. So people with disabilities, we know are victimized at a far greater rate than their non-disabled peers. And so very often folks are abused by family members, their support staff, and these are people who like folks should trust. And so in this session, we talked about understanding how to be safe, identifying who can be trusted, where to find help. We also talked about how people with disabilities are sometimes looked at as not being human, not being able to make decisions and not being able to speak up for themselves. And so I wanted to make sure that folks knew their value, that they knew that they have a right to say no, and that they have a right to heal from trauma, and that they can advocate for themselves and others. And you know, there are people out there who can help them. This conversation also led to a next step of the program, which is to discuss privacy. Privacy is super important because as we know, in many settings for people with disabilities, most are in a group home. There are people that support them who come in and out. And it can be very difficult to feel like there’s a sense of privacy, a private life that they can have, but it is important to facilitate and foster that that is so. And also to say whatever you happen to be doing in private, as long as it’s healthy and safe, then that is something that you have the right to do. And so that is another component of this program, because as we talk about all of these other things as well, in terms of keeping people with disabilities safe, there is also the other component of pleasure and pleasure can be watching TV or pleasure can be something else and that has to be okay because it is okay for anyone else that is a natural part of life and intimacy and self-love, however you want to brand it, but making sure that these are things that are kind of removing the taboo nature of some of these things and also advocating for privacy and teaching people with disabilities how to advocate for privacy despite all of the other people who may be around, maybe in their lives, maybe even in their own spaces from time to time, finding ways to ensure that their privacy is respected is also a major component of the program. So we talked about privacy and a person’s right to privacy. And then we went into what a person has the right to do in private. So like if a if a person chooses to, you know, close the door and watch a movie, you know, that’s privacy. If a person chooses to close the door behind them and masturbate in private, then they should be able to do that. Some people receive care from a family member or from a DSP. And so it’s important to stress to you know, our parents to like our loved ones to people providing direct care that you know, some I need privacy, I need some time by myself, I need some alone time. Right. And then we need to we practice like how to have those conversations because you know, at the end of the day, we all need and deserve privacy. And the people that we support deserve that same right as well. And we should respect that. We also talked about what we do in public and private places. And then again, we talked about how to ask for privacy and what that looks like. And then I just want to say like, Hello, out there. People need privacy and that’s okay. So if let’s say, let’s do a little quick scenario because we did a lot of different scenarios during our session. So if a person decides to have someone over and they choose to be alone, we wanna make sure that we’re giving them space and we wanna make sure that we’re giving them their privacy. Right, Ashley? We should be giving privacy. Yeah, privacy is important. And it’s like, you don’t have to keep the door cracked just in case. You know folks are adults and they should be able to engage in adult activities Whatever that looks like for them and privacy and so also people who are providing supports for other people So this is parents. This is loved ones This is you know DSP’s not before you come into someone’s room with before you come into someone’s space, right? So don’t assume their folks are in their rooms or private places just staring up at the ceiling We don’t know what’s going on. So we need to respect people respect their privacy and not before you come in Yes, and like actually We need a long time, don’t we?

Ashley Anderson

Yeah.

Erica Thomas

Yes.

André Floyd

Again, the program is really centered around empowerment and nothing is kind of more empowering. And we talk about this in this space in terms of person-centered supports, making the person the lead in what they want to do, how they want to live, where they want to live, these sorts of things. It is not always, hasn’t always been done in such a way, but it is important to do so. And this is yet another aspect of life in which people like Erica trying to encourage and find ways to encourage from a different standpoint, but also a standpoint that allows someone to be a fuller person. So the next section is all about choices, making your own choices, being empowered to do that, and of course, advocating for yourself. It is super important information as well, especially given the background of everything learned from vocabulary to removing taboos to being able to tell doctors, hey, do this, ask first, or do this before you touch me, get consent before you do these things. All of this is about empowerment and choice and treating a person like a person.

Erica Thomas

Choice in decision making. So in this session, we talked about recognizing what choice looks like and a person’s right to make choices. And then of course, when we make choices, there are responsibilities and consequences that come with those choices. So we talked about that as well. We also identify people who can help us to make decisions and help us with making our choices, because I feel like we all need help from time to time when making important choices. And so this session was especially important because like quite often people with disabilities are looked at as not being able to make their own choices or able to make their own decisions. And I don’t know about you, but I feel like, I mean, I make choices every day, right? And so does Ashley. So Ashley chose what she was gonna wear today. She chose what she was gonna eat today. And you know, I did that too before I left out. And when I have big decisions to make, I mean, guess what? I asked for help with that.

Ashley Anderson

Mom.

Erica Thomas

Yeah, sometimes you ask mom for help. Yeah. So we have these people in our lives who help us with making big decisions. And that should be the same for people with disabilities because they have a right to make decisions. They have a right to make their own choices. And we want to make sure that we’re empowering folks to be able to speak up and advocate for themselves so they can make choices and make decisions. So our last kind of discussion-related session was self-determination and advocacy. And so in this particular session, we learned that people with disabilities have the same rights and responsibilities as their non-disabled peers, and they also have the right to decide what they want their lives to look like. In doing this, we took a deeper dive into understanding a person’s right to make decisions about their bodies, what they do in their communities, and what that looks like. And we also talked about what it means to be an advocate and what the path to self-determination looks like.

André Floyd

Self-determination, that is what it is all about. And even on a day such as today, such as around this time of Valentine’s Day and thinking about that, it allows you to see how so many of these are connected to so many different elements of empowerment. And we think it is incredibly important information. And we hope that if you have any questions or if you have any interest in developing your own program that you can reach out to us, perhaps we can connect you with Erica or use other resources that she has given us as well To be able to do this to have these discussions to help break down some of these barriers and some of this taboo that exists. But finally before we get out of here, I have to say a massive thank you to Erica and Ashley. This is obviously sensitive subject matter, but we felt that it was really important to be able to share this with you. Erica does this on a very consistent basis. She is excellent at it as well. As you can hear, the program is really well thought through, really well filled. It’s a full curriculum with the ultimate goal of self-empowerment and delivering the ability for people with disabilities to be able to have control over their own lives, intimacy, advocate for themselves in their bodily autonomy, what they want, what they don’t want all of that super important and we thank them for their time and also their openness in sharing everything that they have shared with us today.

Erica Thomas

So at the end of the day, we all wanna have the freedom to live the lives that we choose. We wanna make our own decisions. And all of this applies to everyone. It doesn’t matter if you have a disability or not. Thank you for letting me speak and share my ideas. And thank you for giving Ashley and I space to talk about the importance of body autonomy, the importance of having these conversations and the importance of supporting people with disabilities to live their absolute best lives.