Empowering Youth with Disabilities Through Sexual Health Education

Tim Villegas

Hi friends, it’s Tim Villegas with the Maryland Coalition for Inclusive Education, and you are listening to Think Inclusive, our podcast that features conversations with people doing the work of inclusion in the real world. This week, we have two special guests, Connie Senior and Breon Williams. Connie is an Assistant Director with YAI, an organization that supports and advocates for people with disabilities. And Breon is a Project Shine Youth Ambassador. Now, what is Project Shine? You’re going to learn all about it in just a minute, right after I tell you about our fantastic sponsor for Season 12, IXL.

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Okay, after a short break, my conversation with Connie Senior and Breon Williams with Project Shine. Catch you on the other side.

Tim Villegas

Breon Williams and Connie Senior, welcome to the Think Inclusive podcast.

Breon Williams

Thank you for having me.

Tim Villegas

So, Breon, my understanding is you are a Youth Ambassador for Project Shine. Welcome, Breon. And Connie, could you say your role in Project Shine?

Connie Senior

Sure. I am the Project Manager for Project Shine from YAI. YAI was one of the agencies that were part of the three-year project, and I’m the Project Manager. We have an advisory board.

Tim Villegas

Okay, so that’s how you say the acronym.

Connie Senior

YAI, yes. I’ve heard so many things in media, but it’s YAI, which stands for Young Adult Institute. That was the initial name, but since then, we have been serving more than just young adults.

Tim Villegas

Right, okay. Now I know how to reference YAI. Great. So, Project Shine. What I would love for our audience to know is just a little bit about Project Shine and what it is. Then, Breon, you can share how you got involved with the project. Connie, would you mind sharing a little bit about Project Shine?

Connie Senior

Absolutely. Project Shine is a three-year project in conjunction with Planned Parenthood of Greater New York and six other affiliates throughout New York State. It was funded by the Office of Population Affairs through a grant. We found there was a gap in social, sexual, and sex education for youth with IDD (Intellectual and Developmental Disabilities) between the ages of 16 and 24. Over the three years, we first assessed where exactly the gap was and then created something to help youth with IDD access correct information. Information that they didn’t need to necessarily get from a parent but have it accessible in a way they could understand. This would empower them and give them the knowledge they need. We had heavy involvement from people with IDD, including youth ambassadors and other individuals with intellectual disabilities at every step of the project. We also had an advisory board with people with IDD, family members, and professionals.

Tim Villegas

Excellent. So, it’s a three-year grant or project. How far along are we?

Connie Senior

Oh, we completed it at the end of last year. We have a product. There are two products that came from it, actually three, because there was a white paper written as well. There’s a website and a video game that came from the project.

Tim Villegas

And that can be found at the Your Sexual Health Toolkit website, right?

Connie Senior

Yes, and on the website, you can also access the game.

Tim Villegas

Okay, thank you for setting that up. You talked a little bit about this, but maybe unpack it for us about why this particular resource is needed. You mentioned gaps, but I imagine a lot of people don’t like to talk about sex. I’ll be honest, I don’t like to talk about it.

Connie Senior

That is absolutely true, and it’s something we can’t get away from because there is social sexual development. We all develop and have a social, sexual spectrum, so to speak. As you grow up as a child and go through puberty and adolescence, that’s all part of social sexual development.

And you’re an emerging adult and then an adult, right? It’s important because we all go through this, whether you have an intellectual disability or any disability. For many of us, family told us some information, friends told us, and we read things, but we checked things for ourselves. People with intellectual and developmental disabilities learn differently and may think differently, right? They need to be taught a lot of this information. It’s important to provide this information to help prevent abuse, so they can know their bodies better and advocate for themselves better.

When they don’t have this information, the statistics of abuse are staggering. Eighty percent of people with intellectual disabilities will be abused and multiply abused, and it’s because of a lack of knowledge. Sex education isn’t taught in schools in New York City anymore, so how do they learn? They end up making mistakes, being traumatized, mostly because of a lack of knowledge. That’s not good enough. We’re seeing too many things happening.

Tim Villegas

I want to turn it over to Breon. Breon, how did you get involved with Project Shine?

Breon Williams

Well, I got involved with Project Shine because my mom came to me and asked me if I wanted to be involved, and I said yes. I had sex education when I was in elementary school, but as Connie said, they don’t have it anymore. I feel like it’s important for kids to know about sex education and the importance of it, like how to be safe and things of that nature.

Tim Villegas

Yeah. Were you involved in creating the toolkit?

Breon Williams

Not that I remember.

Connie Senior

The youth ambassadors were involved after the website was created. Their main role was to share the information, telling other people about what was on the site, and learning it themselves. Breon is an awesome ambassador, sharing it with his own family. Many people said, “I don’t have an intellectual disability, and I didn’t know half of this stuff.”

Tim Villegas

Exactly. Breon, is that what happened with your family when you shared the toolkit?

Breon Willims

Yeah, I showed my twin brother and even my mother. I shared it with everyone I could.

Tim Villegas

I’ve previewed the toolkit. It looks very user-friendly and clear. We’ll make sure to link it in our show notes for people to use and encourage them to share it, whether as a resource for schools or communities, whether they have an intellectual disability or not.

Breon, a lot of people who listen to this podcast are educators. What do you want them to know about people with disabilities and their access to information about sexual health?

Breon Williams

I want people to know that it’s important for people with disabilities to know about sex education because many are misinformed. They don’t have sex education in schools anymore, so this website is a great tool for kids and even adults to learn more about protecting themselves.

Tim Villegas

Right, exactly. Connie, have you seen any patterns or “aha” moments when people explore the site or try to learn more about sexual health?

Connie Senior

Absolutely. Like the names of body parts. You’d be surprised how many people do not know the names of body parts; they only know the slang names. The fact that the site can read the information to them makes it very accessible. Hearing other people’s testimonials, like the first time they had sex, is also very helpful. The library on the site is extensive, allowing people to look up things they thought they shouldn’t even be talking about.

Tim Villegas

Some families believe that people with intellectual or developmental disabilities should not be thinking about or having sex. How do you get past that barrier?

Connie Senior

People with intellectual disabilities have the same need and desire to love and be loved. They develop the same way. I always say to parents, if your child can love you, do you think they can love someone else? Absolutely. Education is the answer to abuse. Being educated helps with sexual advocacy and knowing that they can say no. Social and sexual education helps them advocate for themselves, know when something is wrong, and report it. It also helps them have body autonomy, like their bodies, and make informed choices. When parents don’t allow their child to get sex education, they’re violating their human rights because sexual rights are human rights. They’re not equipping them to be safer.

Tim Villegas

Right. Breon, is there a part of the toolkit that you found most useful?

Breon Williams

Sure. Learning about body anatomy, how to protect yourself, and even about pleasure. It’s all important, like knowing about the uterus, vagina, penis, and how to protect yourself.

Tim Villegas

I also noticed in the toolkit there are videos or interviews of people talking about these things. Was that helpful as well?

Breon Williams

It was. Hearing from someone else’s point of view about their experiences and how they learned to better themselves was helpful.

Tim Villegas

Are there any other barriers to people with IDD accessing information about sexual health?

Connie Senior

Sometimes the material is not created in a way that’s easy for them to understand. The videos are great because you get to hear from people. There’s also shame from families, not just fear. When I was growing up, it wasn’t something you talked about. Another barrier is not having enough trained people who are sex-positive. You can have sexuality training, but if it’s negative, portraying sex as bad, it doesn’t help. We need more trained people who see social and sexual rights from a positive lens.

Tim Villegas

There’s not a lot of information out there that uses plain language or makes things understandable for a wide variety of people. The barrier is really big for any of this information.

Connie Senior

Absolutely. Medical professionals also lack information. Families turn to clinicians, pediatricians, and therapists for help, but they often don’t have the information to give. That’s a barrier for someone learning about their bodies and trying to figure things out with no one to tell them.

Tim Villegas

Right. Even if a family talks about sex positively and wants to give good information, if the resources aren’t there, then what do you do?

Connie Senior

Yeah, and that was one of the things we saw. Materials where the bodies were not biologically correct, but it was a drawing that didn’t look right. So, we had medical personnel check the knowledge. As you said, it’s so user-friendly. What I also like about it is that it’s real. It’s talking about different positions, but not in a pornographic way, in an educational way. It’s letting people know there isn’t just one way to do things. You can take this to your therapist and talk about it. You can take it to your doctor and inform your own doctor about it.

When you think about schools that go up to 21, they’re in school at 17, which is the age of consent. So, 17-year-olds in school are able to have sex but are not having any information. Then we wonder why they end up in spaces they might not have chosen if they were educated.

Tim Villegas

Right, exactly. I haven’t looked at the toolkit in total, but what about reproductive health? Is there anything about that in the toolkit?

Connie Senior

Did you get to that part yet, Breon? This is like pregnancy.

Breon Williams

I don’t think I got to that part.

Connie Senior

See, that’s another thing. A lot of information is about how to not get pregnant, how to not get STIs. That’s what schools talk about. They don’t talk about pleasure. They don’t talk about what can be pleasurable, what parts of your body can be pleasurable, like the clitoris or different positions. It does talk about different contraceptions. It has a definition of what abortion is. It covers gender, orientation, everything. It’s such an awesome tool. I’ve been sharing it everywhere.

Tim Villegas

People can find this at yoursexualhealthtoolkit.org. Like Connie and Breon said, there’s a glossary, a spot for stories, a game, and additional resources for anyone to use.

Connie Senior

Yes, it’s very broad. Another thing that’s really good about it is there are guidelines. For a family or caregiver that may say, “I don’t know where to start,” there’s a whole guideline of what to think about, questions to ask, things to assess yourself. There are also guidelines for professionals, for educators, and for a person with IDD who just wants to go on by themselves. It’s covered.

Tim Villegas

It looks very comprehensive, and I think the team did a great job with it. Any impact stories that you can share with our audience about people using the toolkit and learning something new or impacting their life in any way?

Connie Senior

Did you have any stories, Breon?

Breon Williams

No, I don’t need any stories.

Connie Senior

There is one person, a young woman in a social sexual group that I run. She took it with her to her GYN appointment and came back saying she was able to talk about some things with her GYN that she didn’t even know she wanted to know about. That’s exactly what it’s for, to help advocate and give the language needed. She took it on her tablet to her GYN. That’s exactly what it was created for.

Tim Villegas

That seems like a very useful way to show, “Hey, this is what I’m looking at. This is what I’m trying to understand. Can you help me with this?” Breon, anything else you want to share with our audience about the toolkit or your experience as a youth ambassador?

Breon Williams

Yes, the toolkit at yoursexualhealthtoolkit.org covers various topics of sexual health. It teaches the importance of being safe because a lot of kids and older people are misinformed. If you get diseases and don’t know what you’re doing or anything about your body, you can hurt yourself. That’s why this toolkit is a good resource for people.

Tim Villegas

Absolutely. Thanks, Breon. I wanted to show you, I’m wearing my Project Shine shirt.

Breon Williams

Oh yeah, let me see it. Can you see?

Tim Villegas

There you go. I see it now. Project Shine Ambassador. It’s a blue shirt with white letters. Very nice. Breon, how often do you get to go and speak about Project Shine?

Breon Williams

Not that much. But we had a conference at the headquarters, and we got to see all the ambassadors. We talked about sexual health and educated people on it. I thought that was pretty cool.

Tim Villegas

That’s cool.

Breon Williams

Yes, and we got book bags. I thought that was cool.

Tim Villegas

Excellent.

Connie Senior

He was featured in the agency’s internal and external newsletter as a youth ambassador. We want to get more opportunities to talk about it. One thing he said that shouldn’t be missed is the need to use lubricants with certain sexual positions. It’s not just about safety from getting pregnant or STIs, but also safety within the interaction itself.

Tim Villegas

Right, that’s a good point. We’ll link that article in our show notes so people can learn more about it and get to know you better, Breon. Thank you for all that. The last segment is called the mystery question. I have a stack of prompt cards with getting-to-know-you questions. Breon and I were talking about sports before you came on, Connie. Breon is a New York sports fan. This is more general stuff about life. Let’s see what this says. What is the nicest thing a stranger has ever done for you? That’s the question. The nicest thing. I don’t know if I can remember the nicest thing. One of the most recent things that happened: our family went to vote early. We parked and took a shuttle. After voting, we went back to the car, and it was dead because I left something on. I ran up to a person and asked if they could jump our car. They were so nice and helped us. That was the most recent nice thing a stranger did for me.

Connie Senior

You want to go next, Breon?

Breon Williams

The nicest thing anyone has ever done for me was recently when I went to vote. I was waiting in line with my brother and needed a pen. A lady was kind enough to give me a pen to write. I gave it back to her and said, “Thank you, ma’am. I appreciate it.”

Tim Villegas

Two voting stories, nice.

Connie Senior

Mine is a foodie story. I was in line at Dunkin’ Donuts getting my coffee and bacon bits. When I went to pay, the person in front of me had already paid for my order and gave me the change. I got $6 change. I was like, wow.

Breon Williams

That’s nice.

Tim Villegas

That’s amazing. They paid in cash?

Connie Senior

Yes, they paid in cash, and I got $6 change.

Tim Villegas

That’s a good story. For your coffee and bacon bits.

Connie Senior

Yes, Dunkin’ Donuts.

Tim Villegas

Very good. Awesome. Thank you for sharing. Breon Williams and Connie Senior, thank you so much for being on the Think Inclusive podcast to talk about Your Sexual Health Toolkit. Really appreciate it.

Breon Williams

Thank you for having me.

Connie Senior

Thank you.

Tim Villegas

That’s it for this episode of Think Inclusive. Time for the credits. Think Inclusive is written, edited, designed, mixed, and mastered by me, Tim Villegas, and is a production of the Maryland Coalition for Inclusive Education. Original music by Miles Kredich, additional music from Melod.ie. Thank you to our sponsor, IXL. Learn more at ixl.com/inclusive. We appreciate each and every one of you that listens, and we’d love to hear from you about how you are using our episodes. Are you using them for a class you teach, or are you sending them to your local school administrators? Let us know. You can always reach out to me at TVILLEGAS@MCIE.ORG. Thanks for your time and attention. And remember, inclusion always works.