A full life, minus one thing
Adriana Quinones is happy caring for three children as a nanny, painting with colorful plastic diamonds and hanging out with her mom. But something else she’d like in her life — a good man — has proven hard to find. She has intellectual and learning disabilities, compounded by English being her second language. Adriana doesn’t always recognize red flags and has been abused in many ways by love interests.
People with intellectual disabilities are at a higher risk of abuse than the general population. Society doesn’t always set up adults with intellectual disabilities to succeed in relationships. Can sex ed, therapy and other support help people with intellectual disabilities avoid abuse?
“Social inclusion is the ‘next frontier’ issue in intellectual and developmental (IDD) research, policy, and practice,” says the American Association on Intellectual and Developmental Disabilities. People with intellectual disabilities are our classmates, coworkers and neighbors. But the AAIDD says: “Social inclusion goes far beyond just being present in the community. It’s about the roles we take in civic life, who we love, and how we build fulfilling relationships with others.” The third season of A Valid Podcast brings listeners into the lives of people with intellectual disabilities and asks what society could do better to support social inclusion.
Guests:
Adriana Quinones
Monica Ruiz
Beverly Frantz, Temple Institute on Disabilities.
The podcast is produced by All-Abilities Media at the Center for Media Innovation at Point Park University. The podcast will be published via Unabridged Press podcast channels. Images and written material will appear on PublicSource. A Valid Podcast is on Apple Podcasts, Anchor.fm Spotify, Google Podcasts and others.
Point Park University’s Claire Lindsey interviewed Adriana Quinones and Monica Ruiz, thanks to support from the Pittsburgh Media Partnership. Jennifer Szweda Jordan hosts this season with commentary from award-winning podcaster Erin Gannon. PublicSource Managing Editor Halle Stockton provided editorial advice. Jeweltone Production’s Liz Reid mixed audio and interviewed guests. Portions of this podcast were recorded at Rain Cat Recording Studio in Jensen Beach, Fla. Cover art was created by Mick Fisher, with assistance from Creative Citizen Studios. George Casselberry and Jane Ondrusek, from the Woodlands Foundation, provided music for this season.
TRANSCRIPT:
TRIGGER WARNING: In this transcript there are references to rape and sexual assault that trigger some readers.
QUINONES: Reina!
(Sound: Dog nails on hardwood, laughter..)
JORDAN: Adriana Quinones has a full house. Her Chihuahua mix, Reina, skitters around her apartment. Two girls she nannies play a computer game in the living room. Adriana’s mom, Monica Ruiz, helps with paperwork at the dining table.
RUIZ: Did you sign this sweetie? I’m gonna send the check with this.
JORDAN: Like a lot of us, Adriana, who’s 30, would like one more person in her life, a boyfriend.
QUINONES: I like to, like, go out to eat, go to movies … just walk around the park, cook together and watch TV. And that’s it.
JORDAN: It doesn’t seem like much to ask. Especially from someone who makes you feel right at home when you visit. But like a lot of us, Adriana has had some really difficult relationships–in dating but also in friendships–hanging out with the wrong crowd kind of thing. And because Adriana has learning and intellectual disabilities, that can magnify problems.
QUINONES: That’s hard for me to, like choose good, you know, friends.
JORDAN: I’m Jennifer Szweda Jordan. This is A Valid Podcast. We are in our third season and we’re talking with adults with intellectual and learning disabilities about relationships. We’ll also be hearing about ways to support people with these disabilities to have positive relationships. That includes dating and friendships. Later in this episode, we hear from Temple University Institute on Disabilities’ Director of Criminal Justice and Sexuality Initiatives Dr. Beverly Frantz, who spoke about the importance of sex educaiton. Award-winning podcaster Erin Gannon will join with commentary throughout this season.
GANNON: Because there are so many different issues, and stories to learn.
JORDAN: I’ve worked with Erin not just in podcasting but in the group home where she lives. I’ll share some of my experiences too with her and other group home residents. I have chauffeured couples, helped pick out ugly Christmas sweaters, coordinated phone calls between love interests. Supporting couples who have intellectual disabilities to simply have the opportunity to talk together on the phone, to be alone in the same space, it’s not as easy as you might think. A lot gets in the way. Now we head into our first conversation of this series with Adriana and her mom. And just as it has for everyone else, the digital age has caused particular problems in Adriana’s experience of relationships.
QUINONES: I feel like, I don’t know, like lonely. I feel unloved, (they’re) not paying attention. When I text this person don’t answer me and then–and I noticed you’re, you know, online, and I was like, ‘OK, what’s going on? You OK?
JORDAN: Note that In today’s episode there are references to rape and sexual assault that trigger some listeners.
Point Park University student Claire Lindsey interviewed Adriana and her mother.
Adriana showed Claire around, sharing her latest hobby. She presses colorful diamond-shaped pieces into slots on a plastic canvas.
QUINONES: This is the… Joseph, Mary and … the baby. This is baby Yoda and Stitch.
JORDAN: Adriana lives in a great old two-level house along the T line in Dormont. The five rooms give her space to spread out her crafts and enough room to post the kids she nannies. She’s worked hard to get where she is.
RUIZ: When she’s determined to do something, she’s gonna do it.
JORDAN: One thing that’s been tough on Adriana is her parent’s divorce. They separated when she was a teenager. Her dad started a new family in Cleveland. And disabled or not, that’s tough. One predictor of positive romantic relationships for women is their relationship with their dad. Adriana’s has been rocky..
QUINONES: Well, my dad is really difficult right now. Like, for example, like on my birthday. I do feel like really sad because he texted me on my birthday. So that wasn’t very nice. He didn’t call me to say ‘Happy Birthday.’ Yeah. So that was a sad day for me.
JORDAN: Adriana spent her early years with her dad’s parents in Puerto Rico while Monica and Adriana’s dad went to school in the U.S. So Adriana’s first language is Spanish. When it came time for school, Adriana joined her parents in Cleveland. She says the language difference made learning in the U.S. tough.
QUINONES: English is hard—like reading, and reading a book. Well, I don’t like to read a book. And my mom does read a book. I was like I don’t know how you read books. To read books, I can’t do it. And writing is hard for me (in) English.
JORDAN: It’s hard to know where Adriana‘s disability begins and learning a second language ends. Adriana went through special education classes throughout her schooling.
RUIZ: She wasn’t talking very much in kindergarten, and so she repeated kindergarten. Once we got to like, first and second grade, we were told, “You know, I think there’s some learning disabilities here, or something, you know, we need to start performing some tests and things.” And, you know, we were told, “Yeah, you know, we don’t think she’s gonna make it out of the fifth grade.” And we’re like, “Well, okay, well, if, if that’s what it is, that’s what it is. But let’s just see if there’s something that we can do to kind of help that.”
JORDAN: Adriana got help. And she made it to fifth grade. And while she had to repeat the grade, she kept going.
RUIZ: We had another evaluation at that time. And, and, you know, again, they were like, “Well, you know, she’ll probably never finish high school, unless she’s got like, a lot of help and whatever. And she definitely won’t be able to go to college.”
JORDAN: The family was told that even if she did go to college, her work options would be limited to repetitive tasks.
RUIZ: So like, she has probably been, and every enrichment program.
QUINONES: Oh yes.
RUIZ: (Laughs) Right? And just trying to get her exposed to things because if this is it, this is it. But if it isn’t, then it isn’t, right? If there’s one extra skill that she learns, you know, because we’re doing 20 extra things, we’re okay with that one extra skill or no extra skill.
QUINONES: And finally I graduated high school.
RUIZ: She did—she did graduate high school.
QUINONES: Honor award.
RUIZ: Yeah, she did, and with honors, she got straight As. She ended up taking classes at CCAC. You know, that’s what I’m saying. Like when somebody receives the right support in the right environment, amazing things can happen. And we just need to provide more spaces in our world for that.
A Valid Podcast Is working to create more space in our world for the conversations like the one you’re hearing. A Valid Podcast comes to you from the All-Abilities Media Project at the Center for Media Innovation at Point Park University. We support people with disabilities To produce podcasts and other media and host disability-focused events. Or supported primarily by charitable foundations. And if you like what you’re listening to and can support our work, by all means, please head over to allabilitiesmedia.org
Around the time Adriana graduated, she was faced with a new hardship. And that’s putting it lightly.
A family member sexually assaulted Adriana three times. She was 18. The years since have included other betrayals of trust. A boyfriend raped Adriana. And when I asked if there was any other physical or financial abuse over the years, her mom jumped in.
RUIZ: All of, all of the above, yeah.
JORDAN: And then one night last year, a friend kept texting Adriana to come to a house party. She went. There was dancing, there was drinking into the morning. And at some point Adriana blacked out.
RUIZ: And I couldn’t remember how in the world. So woke up in the hospital, I thought it was a nightmare for me.
JORDAN: She was a passenger and a truck that crashed. A man at the party, the driver, told police he had four beers.
RUIZ: The car was, it was a pickup truck. And on the news, you can see it’s just like one big ball of metal. They had to cut her out of it. And she could have died. She’s very lucky to be alive.They knocked a utility pole completely out. And then the impact hit her side of the car.
JORDAN: Adriana‘s pelvis was fractured. She had surgery. The accident took place in the early days of COVID. She was in Mercy Hospital in downtown Pittsburgh for three weeks. Her mom was only able to visit once a day for an hour. She’s back on her feet, able to run around with those kids she nannies. And Adriana’s also working now to learn the nuances of good relationships. A therapist helps her identify red flags.
QUINONES: I’ve seen my counselor like every, every week, once a week. And she’s very nice and we always talk about like red flags and stuff. If you see red flag, like what do you think about it? And then we like you know write it down and stuff. And you know, it helps, it helps with the red flags.
RUIZ: Can you give me some examples of what red flags are?
QUINONES: One example is guys like use you and take advantage of you just throw out the bus. Like, oh, you know, I did when I was this person. Like OK, you know. It’s like you hear from them and they come over and you’ve just heard from them for like, months and years and they just want to like, “Oh, hi, how are you?” I’ll be like, “OK, like, really? What a miracle you know, like, why you’re texting me?”
JORDAN: Adriana’s experience raises the question: How do any of us learn to navigate relationships? Dr. Beverly Frantz has an idea. She directs Criminal Justice And Sexuality Initiatives at Temple University’s Institute On Disabilities. Dr. Beverly says comprehensive sex ed could teach boundaries, healthy relationships, consent and dating violence. But Adriana wasn’t offered sex ed in her schooling.
Adriana will be back in the next episode..
MUSIC: Piano, “Always,” by Jane Ondrusek, the Woodlands Foundation.
JORDAN: PublicSource is copublishing A Valid Podcast this season. The publication has long been a leader in Pittsburgh-area disability coverage. One recent story I invite you to check out is about one of the musicians for this very podcast–pianist Jane Ondrusek. Jane’s an accompanist with the Woodlands Foundation, which hosts music camps for people with disabilities. You can learn more about her at Publicsource.org.
And now to Dr. Beverly from Temple University. She spoke with Liz Reid for A Valid Podcast.
REID: What are the common misperceptions about people with intellectual disabilities and sexuality?
FRANTZ: One of the most common misconceptions about people with intellectual disabilities and sexuality is that they’re asexual that they’re not really interested in having a serious relationship, getting married, having children, self-identifying as who they are, instead of in quotes “the system,” suggesting that everyone is heterosexual. I think those are some of the most common misconceptions.
I think we do it because we are so uncomfortable talking about sexuality, that we would just rather not have that kind of discussion.
REID: Do you have any idea to what degree sex ed is happening for people with intellectual disabilities?
FRANTZ: No,even if a school district offers sex education, we don’t know if students with disabilities are included. We don’t want somebody to sit in a classroom, here’s something, misinterpret it, and believe that’s a fact. That’s really important. The Department of Justice just released their statistics on crimes against people with disabilities. So they say the rate of violent victimization is almost four times higher for people with disabilities than without disabilities. And females with disabilities are at a rate of violent victimization. 49.4% compared to females without disabilities at only 11.3%. Now what they do say in their study, it’s very hard to get to people with disabilities to assess to actually just ask them the question: “Have you ever been a victim?” Because a lot of individuals with disabilities live in group homes. So how do you access the group home? How do you access an institution? How do you access somebody, even if they’re living with their family? Does the family answer, or does the individual answer? So even though these statistics are very high, they probably are lower than what is really happening.
REID: Students with disabilities often have IEPs–individualized education plans. If a parent or even a student for that matter wants to get sex ed in an IEP, what do they have to do and how likely are they to succeed?
FRANTZ: Ah, it’s a loaded question. Generally, IEPs focus on negative aspects: A student isn’t doing X, Y, or Z. They’re not generally talking about including something including a proactive strategy. Very seldom if ever do you have anybody that’s willing to talk about healthy sexuality. And we always encourage parents to bring it up. If a parent brings it up, unless there’s somebody that they’ve already made a connection with that understands the importance of sex education, it just isn’t heard. People with intellectual disabilities are going to make mistakes. But they’re the same types of mistakes as people without disabilities make. And so sex ed can help them, limit the amount of mistakes they might make, help them to understand the consequences, and to feel comfortable talking to somebody about whatever they’re thinking or feeling or is going on.
We have parents that are constantly and, I absolutely mean this in all sincerity, call us on a regular basis and ask us where they can go for their son or daughter to get sex ed.
REID: One of the people in your department, Parris Boyd pointed out that in a study about LGBTQIA people with disabilities, one woman in a same-sex relationship was told by her parents that they would stop providing life-sustaining care if the relationship didn’t end. Do you have a sense of how often LGBTQIA people with intellectual disabilities are receiving positive support?
FRANTZ: We don’t know that. And we don’t know that because we are still somewhat resident or hesitant rather, to talk about anything other than heterosexuality.
REID: What about group homes–knowing that the turnover rate for staff is between 50 and 85% a year–what can they do to better support their residents or clients?
FRANTZ: Well, we’ve been struggling with that for a long time. The Office of Developmental Programs in Pennsylvania has put out a bulletin and has asked all provider agencies that they license to have comprehensive sexuality policies and training for their staff. It is not a mandate. So you have a high turnover of staff. And so you train once you this week, your training staff and You train all your staff. And in two months, you have a turnover. And then how do you retrain those other staff. And, and part of it is, you know, we would advocate that you train everybody as soon as they’re hired. And that you monitor how they use that training. We’ve also heard from staff that, why am I here? Why are you doing this for them when nobody did it for me? And so we forget that people without disabilities are sexually abused and physically abused at high rates also.
REID: Pennsylvania is one of the states that has passed legislation making it easier for police and prosecutors to investigate cases and take them to trial. What do you think of the effectiveness of that legislation?
FRANTZ: We just don’t see that many people reporting to police. So we can do police training. But how does the victim actually access police to report what happened? If they live in a group home, who’s going to make that phone call for them? Because a lot of times people that live in group home, even though there’s a telephone there, they don’t have access to it. Agencies like to do their own investigations, and they make a determination whether they think it’s legitimate or not. How does that victim actually get to the police. And that’s one of the biggest hurdles. That’s where some of the self-advocacy groups have been extremely wonderful.
JORDAN: Thanks to Dr. Beverly Frantz of Temple University’s Institute on Disabilities for sharing her expertise.
And now I want to bring in a conversation with Erin Gannon. Erin inspired All-Abilities Media with her award-winning podcasts. She interviewed her parents about raising a child with Down syndrome–Erin has Down syndrome. Erin says her family’s example has taught her a lot about love.
MUSIC: Harmonica, “Beautiful Christy,” composed and played by George Casselberry.
JORDAN: What did you learn from them?
GANNON: Not just the way they look at each other–just just watching them, they have a connection
JORDAN: So what are some of the things that you are what’s like something you see that tells you they have a connection?
GANNON: I can tell because they have that like sort of like a you just can’t, can’t see it. But they feel it.
JORDAN: Erin herself had a great romantic relationship several years ago.
GANNON: I was at a dance. No, in a group session I was with him. And he was a lot of fun. Really easy to talk to. And he was the most one wonderful person I ever dreamed of having him as a boyfriend. We went out for dinner for my birthday and sometimes we kissed but not all the time.
JORDAN: Sometimes what?
GANNON: Sometimes we kissed. It was going really well.
JORDAN: At the same time, a family member was trying to connect Erin with a different man, a coworker. He said to Erin:
GANNON: I hear you are looking for a new boyfriend. I’m like no I already have a boyfriend…that turned into like a big mess and a half.
JORDAN: The coworker persisted.
GANNON: He tried to kiss me.
JORDAN: In the office? At work, he tried to kiss you?
GANNON: Yeah, he tried to kiss me.
JORDAN: Oh.
GANNON: My boss said, “No we can’t do that.”
JORDAN: Yeah, that’s like, harassment stuff now. Yeah. Um, okay, so what happened?
JORDAN: The real boyfriend stepped in.
GANNON: So he ended up calling him to back off.
JORDAN: And that’s what broke you up?
GANNON: Yeah.
JORDAN: Erin said she and the boyfriend talked and the whole thing got to be just too stressful for both of them.
GANNON: The breakup is not based on my decision or his. We made it together. And of course, I called his house and just I wanted to wish him a Merry Christmas. And then after that his mother hung up on me and said that I broke his heart. No, I did not break his heart. It was both our decision.
JORDAN: So, um, do you think you’d ever date someone again?
GANNON: No.
JORDAN: Really? Never?
GANNON: Never. After what happened, I wouldn’t.
JORDAN: Wow, that’s kind of sad to me.
GANNON: Because some nights I end up crying.
JORDAN: Now, years later, Erin feels at peace about it.
MUSIC ENDS
JORDAN: We’ll hear more of Erin’s story, and Adriana’s, on the next episode of A Valid Podcast. Thank you so much for listening.
This work is part of the All-Abilities Media Project based at the Center for Media Innovation at Point Park University. CMI Director Dr. Andrew Conte is executive producer of this podcast. And from interviews to music, and the cover art for this podcast, the majority of us producing this have one or more disabilities.
PublicSource’s Halle Stockton was the lead editorial consultant for the podcast. Liz Reid, of Jeweltone Productions, is our audio engineer and sound designer. Point Park University’s Claire Lindsey conducted research and interviews for this series. Claire’s work was thanks to funding from the Pittsburgh Media Partnership. Disability advocates Dr. Rachel Kallem-Whitman and Erin Gannon consulted on the content of this podcast.
George Casselberry created the original harmonica piece used in this episode.
I’m Jennifer Szweda Jordan. I publish Unabridged Press and also work as the All-Abilities Media Project Manager.
On behalf of our team, we’re all so grateful to Adriana Quinones for sharing some really difficult stories with us. I hope you’ll check out the great photos of Adriana that accompany this podcast on publicsource.org.
