Romantic relationships are important in the lives of adults with developmental disabilities. The purpose of this study was to explore dating and romantic relationships among these adults and to identify the nature and extent of interpersonal violence in their relationships. A random sample of 47 women and men participated in semistructured interviews. The authors found that relationships sounded very typical of people without disabilities, but their time together was more limited than they wanted. A high percentage of participants had experienced interpersonal violence, primarily in the form of name calling, yelling, screaming, and physical assault. Although the police and family or friends were the first sources of assistance following an abusive incident, more than one third of the participants said they did not seek any help.
Researchers have suggested that sexuality and romantic relationships are important in the lives of adults with developmental disabilities (Siebelink, de Jong, Taal, & Roelvink, 2006) and that women with developmental disabilities often place great value on partnered relationships, even if the partner exploits and abuses them (Stromsness, 1993). People with disabilities have been reported to be frequently abused in dating and partnered relationships (Copel, 2006; Gill, 1996; Nosek, Howland, Rintala, Young, & Chanpong, 2001; Smith, 2008). Women with disabilities have a higher risk for interpersonal partner violence than women without disabilities (Brownridge, Ristock, & Heibert-Murphy, 2008). Factors such as witnessing domestic violence, lack of communication skills, and poor problem-solving strategies (Carlson, 1998) are thought to contribute to victimization in dating and partnered relationships for people with developmental disabilities, as are lack of specific sociosexual knowledge and skills such as seeking consent, good and bad touch and mutuality, and social dimensions of gender (Cambridge & Mellan, 2000).
Carlson (1998) conducted one of the few studies of domestic violence incidents in people with developmental disabilities. Her findings suggested that physical violence and emotional abuse are widespread among this population. Although the study was limited, due to the small sample of women suspected of being victims and findings based primarily on perceptions of key informants, abuse dynamics were found to be similar to other domestic violence survivors. Elsewhere, women with developmental disabilities have reported fear of physical retaliation as a result of displeasing partners, emotional and physical abuse, painful sex, and rape (McCarthy, 1999).
There continues to be a paucity of published research on interpersonal and romantic relationships of people with disabilities. Unfortunately, most of this literature is focused on the problematic aspects of sexuality, such as sexual abuse, sexually transmitted diseases, and inappropriate sexual behavior (Siebelink et al., 2006). Sociosexual knowledge and attitudes affect socialization of people with developmental disabilities and their ability to form meaningful relationships with people of both genders (Galea, Butler, Iacono, & Leighton, 2004). Yet, sexuality and romantic expression of people with developmental disabilities are often avoided or ignored, thus creating barriers to the development of appropriate sociosexual skills (Galea et al., 2004; Siebelink et al., 2006). As Tepper (2000) stated, “Negative sexual messages about people with disabilities fuel negative attitudes and misguided beliefs about sexual potential” (p. 288).
A better understanding of the nature of interpersonal relationships among adults with developmental disabilities is needed to effectively support them in developing meaningful relationships and avoiding abuse. In this study we explored dating and romantic relationships among adults with developmental disabilities and identified the nature and extent of interpersonal violence in their relationships.
A semistructured interview questionnaire was developed and administered in face-to-face interviews to obtain descriptions of relationships, personal experiences of interpersonal violence, and how situations involving violence in dating relationships were handled by participants. The process used to develop the semistructured interview included literature review, item generation, and pilot testing. Information from articles in the domestic violence and disability services fields, as well as from local, state, and other groups was used to develop potential questions. The Institute on Disabilities at Temple University (Philadelphia, PA) provided additional information and made suggestions for questions specific to people with developmental disabilities who had experienced violence and abuse. Ultimately, a questionnaire developed by the Texas Center for Disability Studies (Armour & Escamilla, 2003) was adapted for this study. An initial list of questions was reviewed with volunteer participants from the Anchorage, Alaska, chapter of People First, a self-advocacy organization of people who have developmental disabilities. The volunteer participants reviewed potential questions for relevancy and provided feedback, including suggestions for modification. Two volunteer participants, one female and one male, engaged in trial interviews to make sure the final draft of the semistructured interview was understandable and to determine the approximate amount of time needed to complete the interview. Revisions were made until the 2 volunteer participants agreed that the semistructured interview was relevant and understandable. The final questionnaire included demographic information, fixed-response questions, and open-ended questions about dating, problems in their relationships, experiences with interpersonal violence, and support systems.
The target population consisted of people with developmental disabilities residing within the Anchorage area and Matanuska-Susitna Valley in Alaska. To be included in the study, participants had to meet the following criteria: (a) possess sufficient verbal skills to answer interview questions, (b) not experience a severe intellectual disability, (c) live in a home other than with parents, (d) live in a home with no more than three other peers, and (e) live without continuous supervision. Community agency staff identified potential participants. The goal was to conduct semistructured interviews with 25% of a total population pool of 172 potential participants. A random sample of 47 participants (22 women and 25 men) completed the semistructured interview, representing 37% of the total population.
Following approval for the study by the University of Alaska Anchorage Institutional Review Board, a letter was sent to the five main service agencies in the Anchorage area and Matanuska-Susitna Valley in Alaska that provided services for people with developmental disabilities. The letter explained the purpose of the study, how data would be collected, and requested assistance in recruiting participants. All five agencies agreed to participate in the study. These agencies were asked to complete the following: (a) develop a list of individuals receiving services from the agency who met the participant sample criteria; (b) assign a number to each person on the list; (c) match the random number provided to a potential participant; (d) contact the person assigned that number, read a brief written description of the study, and determine whether she/he wished to participate; and (e) provide sufficient information about those who agreed so that the researchers could follow up with informed consent and arrangements for interviews. For some participants, provider agencies agreed to provide transportation and private space to conduct the semistructured interviews. Other interviews were conducted in private at the participant's home or at the Center for Human Development at the University of Alaska Anchorage.
Semistructured interviews were conducted by the first and second authors (K.M.W. and R.L.B.), both of whom have extensive experience and training in the areas of developmental disabilities and domestic violence. On the appointed day and time, the interviewer met with the participant in a private location. To ensure participants understood the informed consent, the interviewer read a section and asked the participant to describe what the section was about. If the participant did not understand, the interviewer provided an explanation until the participant understood. Participants received $25 in recognition of their time and effort. Interviews lasted approximately 60 to 90 min.
For the qualitative analysis of the open-ended questions, we used an application of the Consensual Qualitative Research Model (Hill, Thompson, & Williams, 1997). Interviews were transcribed and coded using HyperRESEARCH software (HyperRESEARCH, 2003). The process involved two researchers' coding the data independently and then meeting to come to a consensus, while a third researcher served as auditor, providing feedback on the analysis. The three researchers rotated in the role of the auditor. This process was continued two more times to arrive at the final version. Interrater reliability was not assessed statistically. Hill et al. (1997) argued against “interjudge agreement methods” because “analyzing human communication is difficult because there are many ambiguities in meanings. Having the freedom to think and talk about these ambiguities helps the team come up with more accurate conceptualizations” (p. 524).
Descriptive statistics were calculated for the demographic information and fixed-response questions to provide an indication of the incidence of interpersonal violence among adults with developmental disabilities. Chi-square analyses were calculated using SPSS software to examine possible associations between interpersonal violence and gender and level of staff support. Additional analyses were not possible due to small cell size.
Data Handling and Management
Collected data were kept anonymous and confidential. No individual names were associated with the data. Copies of the completed semistructured interview form, tapes of the interviews, and money receipts, were stored in a locked file cabinet. Transcripts were coded by number.
Participants included 22 women and 25 men, who ranged in age from 18 to 57 years, with a mean age of 35.96 years. Over 40% identified themselves as Caucasian, 25% Alaska native or American Indian, and the remainder as other ethnic minorities or unknown. The living situations for participants were almost equally divided between living alone or with one or more roommates. Most participants (83%) indicated they were single and never married. Half of the participants received minimal support (less than 3 hr/day). More than half of the participants worked, most in part-time positions including janitor, food service worker, shelf stocker, and teacher aide. Many of these positions were supported employment through service agencies. See Table 1 for demographic information.
Participants were asked whether they had had a girlfriend/boyfriend since high school and if they currently had one. Of the 47 individuals interviewed, 85% reported either being (n = 17) or having been (n = 23) in a romantic relationship after leaving high school. They were asked what they typically did with their girlfriend or boyfriend. Types of activities engaged in with girl-/boyfriends were categorized as nothing, just talk, organized events, and typical things. The majority of participants described activities typical of friends, such as going to the movies, shopping, or going out to eat. A few participants said they did not do anything with their girlfriend or boyfriend or that they just talked. There were also some participants who reported they only had the opportunity to spend time with their friends at organized events for people with disabilities such as the Special Olympics. Examples of participant responses include the following:
“We go to movies. We go out. She's stayed over here a couple of times and helped take care of me. Our favorite thing to do is go out to eat. I love to eat in restaurants.”
“[We] play video games, go out walking, stay home, watch a movie. There's things we do that's time for us.” [a married participant]
“I don't do much things with him. He don't like computers. He don't like to knit. We do like to go on walks with the dogs. And he likes working out in the yard.” [another married participant]
“I take her to dinner. I bought her a nice bean burrito at Taco Bell.”
“You know, hanging out at his sister's house and playing cards.”
Although 17 participants said they were currently in a relationship, most indicated they did not get to spend much time with their girl-/boyfriend. Several participants said they saw their girl-/boyfriend every day, but additional inquiry revealed they lived in the same home or worked at the same location (see Table 2 for reported activities with girl-/boyfriends).
Description of a Girlfriend/Boyfriend
Participants were asked to describe how they knew whether someone was a girl-/boyfriend. Responses were categorized as follows: feelings toward each other, date, flirt, ask if the person is available, how they treat you, a symbol, and do not know. Approximately one third of participants said “feelings” were how they differentiated whether someone was a girl-/boyfriend.
“When I first met him, I almost kissed him. But not having sex with him.”
“She wanted only me and not anybody else.”
“I think if you have feelings for someone and they express those same feelings back toward you, there's a very strong possibility that there could be a relationship there.”
“I look for what's in their heart. And if they're actually, to what I think my standards should be, then yeah, I'll date them. That's just the way I was brought up.”
“I told her I love her. And she loved me back.”
The next most common response was flirting.
“Oh, they just sometimes compliment me.”
“And he just kept staring at me. And I asked him what he was staring at. And he said well you.”
“I guess it's by the way he looks at you… Oh boy. This is complicated. You know, smiles and body language. Stuff like that.”
“Well, they'd tell me. They'd just come out and tell me. I asked them myself what is it you like about me. And they'd say well I like the way you look. I like your personality. I like they way your eyes are. Your hair.”
Several participants said that getting asked for a date or exchanging phone numbers was how they knew if someone was a girl-/boyfriend.
“He likes you. Asks you out.”
“So he called me up and everything. Gave me his phone number and everything told me to call him.”
“Ask you out. I had a friend who became a boyfriend just by talking and friendship and then it turned into a relationship.”
Other participants said how someone treated them was what defined a girl-/boyfriend.
“Don't abuse you, don't hit you, don't lay a hand on you.”
“He was always there for me when I needed to talk to him.”
Some participants were very concrete in their responses:
“I just ask the person. Not ask the person to be my girlfriend, just like, uh, if you're available.”
“Might try by asking. You could ask the person if you belong to somebody.”
“I usually just ask them, do you want to be my girlfriend? I don't force. I just ask the question do you want to be my girlfriend. If she says yes, then I go home with her.”
Two participants said a ring or some sort of a symbol was needed. One said,
“I think it's kind of hard to tell if you've got a girlfriend or not sometimes unless you've actually got paperwork or a ring.”
Last, 8 participants said they did not know. Table 3 displays frequency of responses.
To explore the nature and extent of interpersonal violence in romantic–dating relationships, participants were asked whether they ever had problems in any of their romantic relationships, such as yelling, hitting, unwanted sex, and/or taking things without permission. Participants who said yes were asked to describe each incident separately and asked whether drugs and/or alcohol were involved.
Of those who said they currently were or previously had been in a relationship (n = 40), 60% (14 women and 10 men) reported they had experienced some type of interpersonal violence. About one third reported incidents with a single romantic partner and two thirds with multiple partners. Emotional abuse was the most frequently described abuse, followed by physical abuse. Eleven participants (45.8%) said that drug and/or alcohol use was relevant at the time of incidents. Table 4 displays frequency of responses.
A chi-square test was conducted to assess whether there was an association between incidences of interpersonal violence and level of staff support (<7 hr or ≥7 hr). The results of the test were not significant, χ2(1, N = 39) = 3.39, p = .066. These results suggested there was no association between level of support and experience of interpersonal violence.
Participants described incidents of emotional abuse, primarily name calling, yelling, and screaming. Proportionately, men described this type of abuse more frequently than women. Almost half of the participants commented that interpersonal problems in their relationships were precipitated by their girl-/boyfriend cheating on them or having sex with someone else. In addition to arguing and name calling, participants also described other forms of emotional abuse, including harassment, threats, denial of food and shelter, exposure to disease, financial exploitation, and destruction of property.
“He called me names. I say goodbye. I'm not putting up with that guy. And I did. I dumped him.”
“She never hurt me. But she put a lot of fear in me that she was going to.”
“He would call me names. He would twist words and make it seem like I'm manipulating him.”
“She said ‘if you go out with any other girls, I will really hurt you or something.’ And when she said that I was like ok. I don't like that. I do not like that.”
“He would scream at me. He would yell at me. He would call me everything but a White girl. Tell me that I'm just a slut and a whore. You know, just things like that.”
“This particular person [she] would yell and scream almost on a daily basis.”
“I was having garbage thrown around my house. I was having my mailbox torn down.”
“He locked me and my oldest one out, so we slept in the truck.”
“Sometimes if the food wasn't fixed right, he'd throw it on the floor. He was angry. He was an angry person.”
“He just lives here, sleeps here, eats here. I mean, I could buy groceries $40 and he says it's not enough to last us for the winter. But I say, you know, if you help too and he gets mad and upset. And he takes it out on me. And I just get upset and I start to cry.”
Physical abuse was the second most frequently described abuse. Both women and men described physical assault.
“He hit me somewhere. I know where. I don't want to say.”
“She tried to hit me a couple of times. Even when the cops had her in handcuffs, she tried to kick me once.”
“So she told her son, my stepson, to take me outside and teach me a lesson. Those were her exact words. So we go outside. He throws me down on a ramp that they had built for me to get out of the house and proceeds to shovel snow over my body. I'm wearing no shoes. I've socks on but no shoes. I've got no gloves on ‘cause he’d literally drug me out of the house. And I'm convinced if my stepdaughter hadn't come home and saw me, she's the only one in the family I still would choose to associate with, that I would be dead today.”
“Well, this one I had she hit me. She hit me quite a bit. I don't know why. Something I might have said something wrong to her. She wanted to hit me for it. I don't know.”
“He got pissed at me one time and threw a pipe. It hit me and cut me. I said why did you do that? And he chased me around my house with my knives, kitchen knives, around the house. Then he went outside and took them with him, and I said, okay, I'll follow him to his house. So I did. He sticked one in the wall next to my head.”
“I went like this to him [made a gesture] and he grabbed my arm and the first thing I knew was that my collarbone was hitting the ground. And that was my whole body weight. He ended up breaking my collarbone and then he made me walk to the theater to watch the movie.”
Five women reported they experienced forced sexual contact in their relationships.
“Oh, he asked me to do sex with him and I said no… Touched me. That's all and yelled at me. I didn't like that. That's why we're not together no more.”
“That's the time I'm kind of embarrassed to say, that's the time putting the penis in, you know. And then when he did, I started to bleed back there. And now [he is] acting like he wants to screw me back there. And I said no to him, and he gets angry and frustrated… Let's just say when I don't give it to him, he leaves.”
“He tried to put his tongue in my mouth. I didn't like that… It was confusing because I didn't know how it happened. But I didn't know any kind of what do… I wasn't sure of myself. And just like, you know, even now today I don't know what to do with violence. You know, how to interpret that… But he went down my legs and come around my side. I told him no and he stopped after that. And he did it again. I said if you keep doing that I'm not gonna sit with you. I slapped his hand away. And he went to reach around on my side, you know, how men do when they want to hold their girlfriend. I didn't feel comfortable at the time.”
“Well, I've been raped twice. But that wasn't dating. I guess it would be called date rape but I don't know… Me and two of my friends we were on a group date and we went back to my house. And we were all drinking and watching movies and stuff. And this guy just said this is what we're going to do. And I said no and my friends were off at the store and he just said do it or else. And I did it. And that was it. I never heard from him again. Didn't report it for a while. Told my mom after a couple months… He was very intimidating. He was a hefty guy. I mean he was strong. Everybody knew his reputation. He was very violent towards people… He tore off my pants. [He hit me] once in the face, just to say be quiet or else. We were all drinking. I'll admit to drinking and maybe I wasn't coherent enough to say no properly or whatever.”
Two men described how they engaged in physical violence during an argument.
“[She] hit me. And I asked her to stop hit me. She stopped. I did throw her on the ground so I could hold her so she couldn't hit me or hurt herself.”
“Oh it [hitting] was lots of times. It was all in the face. And when she went upstairs and got the knife and said now you start something, I just backed off.”
One man reported that his partner accused him of sexual assault.
“When we would go to bed at night. When she was asleep she could still hear a person in their sleep before they go totally in. I said ‘hey hon did you want me to make love to you tonight.’ And she'd shake her head yes in her sleep. That's where she got all the causes of saying that I was sexually harassing her.”
One man disclosed he had a sexual assault charge but said he was falsely accused.
Differences Between Women and Men
Although a higher percentage of women reported violence or abuse, a chi-square test was conducted to assess whether there was an association between gender and interpersonal violence for those participants who were or had ever been in a relationship. The results of the test were not significant, χ2(1, N = 40) = 1.67, p = .197, which suggested there was no association between gender and experience of interpersonal violence.
Sources of Assistance
We were interested in what types of assistance and support participants sought first when interpersonal violence occurred. Participants were asked if they asked anyone for help after the incident. Of the 24 participants who reported experiencing abuse, 9 said they did not seek help. The other 15 participants who did seek help were asked who they turned to for assistance. Sources of help included police, family, friends, staff, doctors or counselors, and domestic violence shelters. The police and family or friends were the most reported sources of assistance. These participants were asked whether they were treated with respect and support by helpers. Overall, participants indicated they were satisfied with assistance they received. Table 5 displays frequency of responses.
The purpose of this study was to learn more about dating and romantic relationships in the lives of adults with developmental disabilities. The results documented that partnered relationships were important in the participants' lives. Even those who spent little or no time with their girl-/boyfriends considered themselves to be in a partnered relationship. Their relationships sounded very typical of people without disabilities from the context of how they described a girl-/boyfriend, how they spent time together, and what they did together (e.g., going to movies, going out to eat, going to the mall). However, for many participants, the time spent with their girl-/boyfriends was limited, and they wanted to spend more time together. About one third of participants indicated they did nothing, just talked, or only spent time at organized events with their girl-/boyfriends.
Unfortunately, violence is widespread in the romantic relationships of adults with developmental disabilities. The literature indicates that people with disabilities are more likely to be victims of abuse than those without disabilities. Some researchers suggest this is 150% more likely (Sobsey, 1994). Women with disabilities are more likely than those without a disability (30.6% vs. 15.7%; p < .01) to report ever being hit, slapped, pushed, kicked, or physically hurt by an intimate partner (Armour, Wolf, Mitra, & Brieding, 2008). In this study, 60% of those who were or had ever been in a romantic relationship indicated they experienced interpersonal violence. The types of violence, predominately emotional abuse and physical abuse, were similar to findings in other studies (e.g., Carlson, 1998; Reiter, Bryen, & Shachar, 2007). Though we expected it to be much higher, only 5 of the women who had or were in romantic relationships reported sexual assault. We found no association between gender and reported partner violence, nor did we find any association between levels of staff support and interpersonal violence. Drug and alcohol use at the time of the incident was reported by one third of participants. The police and family or friends were the first sources of assistance following an abusive incident. More than one third of the participants said they did not seek any help.
This study has major implications for the field. Although romantic relationships appeared to be important in the lives of adults with developmental disabilities, a high percentage experienced violence in their relationships. The interpersonal violence was primarily in the form of arguing, name calling, yelling, and physical assault. These findings suggest that sociosexual skills training, including specific information about preventing interpersonal violence, is needed. However, the framework for this training should be on positive relationship development, not just sex education and staying safe. Furthermore, these adults need more opportunities to spend time with other adults that foster and support the development of meaningful relationships, as has been suggested by others (Grieveo, McLaren, & Lindsay 2006; Siebelink et al., 2006; Wade, 2002). These learning opportunities should be conducted in real-life settings (Wade). Training and support for family members and care providers are also needed. Parent education is a factor in the development of a positive sexual self-identify (Rothenberg, Franzblau, & Geer, 1979; Wiegerink, Roebroeck, Donkervoort, Stam, & Cohen-Ketenis, 2006), as care providers feel ill prepared to provide this type of support (Siebelink et al.). Social participation, friendships, and emotional well being have long been core components in measuring quality of life. However, quality of life has not focused on sexuality and romantic relationships. These issues must be addressed if we are truly committed to enhancing the quality of life for adults with developmental disabilities.
Editor-in-Charge: David Helm