Participation as a continuum
Following the narratives of the interviewees, participation can be understood as a continuum (see Figure 1). The interviewees’ subjective experience of participation in the areas of housing, education, work, family, relationship, and leisure time can be located along this continuum.
Here: Figure 1
The participation continuum extends on a horizontal level (from participation is restricted to participation takes place) and a vertical level (separative setting vs. inclusive setting). Inclusive settings cannot be equated with complete participation, and separative settings cannot be equated with participation that is always restricted. When we consider the interviewees’ subjective view, in general all levels of participation are possible in separative as well as in inclusive settings. For example, some interviewed persons living in an ‘inclusion-oriented setting’ lived on their own in an apartment where they were totally independent. Nevertheless, some of them faced diverse barriers (e.g., restricted social contacts). Due to these barriers, they concluded that their participation was restricted (see red point in Figure 1). On the other hand, we identified persons that lived in a highly separative setting, e.g., in a residential unit for persons with intellectual impairments, and not all of those interviewees were dissatisfied with their current housing situation. Some were satisfied and perceived participation possibilities (see green point in Figure 1). They were not currently considering a change to a more inclusive setting. Such a change would even be a burden at the present time, as they explained in the interviews (see example below).
A2: “Unfortunately, I have to say that yesterday the team [the carers, social workers] did something that I do not like. Behind my back they organized an own apartment for me. (….). I wish that I can simply be in a residential group with other people and have my peace. That I just have to cook and clean the kitchen. And that the carers don’t put me under so much pressure. That is what I want” (A2, male, age 34, cognitive impairment)
In family of origin and relationships as well, inclusive settings cannot be equated with complete participation, and separative settings cannot be equated with participation that is always restricted. For example, some interviewees living in their parent’s home in a quite separated context perceived their participation possibilities as good overall. Others, living in the same setting, saw them as restricted. They experienced limited space for self-determined decision-making and sexual activities due to overprotective parenting by their parent(s) (see more in detail in the paragraphs below).
Even though in general all levels of participation are possible in separative as well as in inclusive settings, a significant part of the interviewees wanted to move towards more inclusion-oriented settings. But they were currently facing various barriers that made it impossible to live in an inclusion-oriented setting. They were stuck in a kind of ‘in-between’ between separative and inclusive settings. For example, some of the respondents did not have any opportunity to pursue gainful employment in the primary labor market, but at the same time they were not challenged enough in the structures of the secondary labor market. It was impossible to contribute and develop themselves in the secondary labor market either personally or professionally. And, due to selectivity and structures of the primary labor market, it was impossible for them to move towards primary labor market employment.
Barriers, facilitators, the handling of barriers, and the mobilization of resources had an impact in every area of life on where persons with disabilities stand on the ‘participation continuum’ and on what kind of support was needed (see Figure 1). This was also the case in the context of family of origin and relationship.
Participation in the family of origin
According to the narratives and the understanding of the interviewees, the family of origin includes parents, siblings, and grandparents. Not all of them were mentioned in each interview. The interviewees prioritized certain family members, due to their relevance and importance in relation to participation, as being a special source of support or an important barrier to participation. Qualitative data material showed that there was a thin line between supportive/caring and overprotective families of origin. Overprotective families potentially limit participation.
Participation takes place; facilitators
The data showed that if there were good social and caring relationships between interviewees and their family of origin, the members of the family of origin were often important reference and support persons for a person with an impairment; they facilitate participation. The support provided by the family of origin was very diverse.
Despite being an adult person, some interviewees—especially persons with cognitive impairment—lived in their parent’s home. There are several reasons for this. For one, the interviewees said that they had and got everything they needed at their parent’s home. For another, parents can cushion the interviewees’ financial burden, since living in an (external) residential group can be very expensive. Even if interviewees no longer lived together with their parents, some of them had daily contact with their parents: “I actually go to my parents' every day for lunch and dinner” (B6, male, 35 years, physical impairment).
Some interviewees mentioned that their parents had offered substantial guidance concerning the choice of appropriate vocational training when interviewees were at a younger age. Even nowadays—at the time of the interview—these parents seemed to help and support their son or daughter when they faced problems at work or in housing.
Parents also provided help concerning the financial literacy of their son/daughter with cognitive impairment or handled organizational tasks, e.g., by keeping in contact and managing relations with hospitals, doctors, and so on. The following quote demonstrates again that for some interviewees, parents played an important role in supporting them and fighting for their needs: “She contacts the university hospital when something happens. My parents are very important to me, because I could not defend myself alone” (A2, male, age 34, cognitive impairment).
In addition to parents, some siblings also provided support for the interviewees. As the data showed, this support was mostly in the area of leisure time activities or holiday arrangements (e.g., creating opportunities to spend holidays together).
For persons with psychiatric impairments, an important facilitator of participation in the family of origin was family awareness of the family’s history of illness(es). As the data showed, the interviewees experienced more understanding for their situation if certain symptoms were already prevalent and were known and accepted within the family of origin. This seems to create a safe space and enhances interviewees’ capacity to share their experiences and concerns (related to psychiatric impairments) with their family of origin: “My great-grandmother has already had depression, my grandmother and my mother, and me, too. So I am the fourth generation. My father also grew older by being surrounded by that. He knew it in my mother-in-law and from my mother, and… Yes, we know that about each other, and we talk about it, and…you can feel it, too” (B4, female, age 50, psychiatric impairment).
From the verbal data we found that persons with cognitive impairment had a general tendency to receive more support and attention from parents and siblings than persons with psychiatric and/or physical impairments, even though also for persons with psychiatric and physical impairments their family of origin was important and could play a supportive role (as demonstrated above).
Participation is restricted; barriers
In addition to interviewees who assessed their relationship with the family of origin positively, there were also persons who reported a lack of relationships or very difficult relationships. Especially persons with psychiatric impairment experienced difficult familial relationships and reported a lack of support from their family of origin. Some of these interviewees stated that their problems or wishes were often ignored or denied by the family of origin: “I have never actually had a place of retreat in the way that I could go to my parents if I had a problem ...” (B2, female, age 32, psychiatric impairment).
The family of origin, especially parents of interviewees with cognitive impairment, sometimes found it difficult to reduce their support or to recognize when the interviewees were able to carry out certain actions independently, as the data showed. This became evident in everyday actions such as getting dressed:
“A12: In the outdoor residential group I could make the clothes ready myself and dress as I wanted, and now that I am in the ‘mummy and daddy hotel,’ mummy puts out my clothes for me again.
I: Ah yes?
I: But you could say: ‘I'll do it myself.’
A12: Yes, I could. But then she says again: No, it doesn’t go together (A12, female, age 36 years, cognitive impairment).
Some parents and siblings make important decisions concerning housing, work, relationships, and contraception. These decisions can limit the self-determination and participation of the person with an impairment. For example, a 43-year-old woman with cognitive impairment said in the interview that her brother placed restrictions on a new housing arrangement. The same woman also perceived restrictions coming from her parents concerning having a love relationship including sexual activities with her boyfriend: “I've brought a boyfriend to my house before. But the parents didn't like him. ... And then I wanted to have... Then the parents came and said: ‘Yes, you may not do that. I have a contraceptive here’” (A11, female, age 43, cognitive impairment). Especially persons with a cognitive impairment often seemed to be dependent on their parents’ consent regarding their love relationships and sexual activity. Further, the data showed that especially women with a cognitive impairment are influenced by their parents in matters of pregnancy prevention and even sterilization:
“A12: Because I love children, but I will never know for myself what it is like to have children.
I: Why do you say that?
A12: Because I had to be sterilized.
I: Why did you have to do that?
A12: Because mum and dad say: If I have children, they would have to take care of them anyway and raise the children. I could not do that” (A12, female, age 36, cognitive impairment).
Handling of barriers
What happens when conflicts, bad relations with the family of origin, or overprotective behavior of parents hinders the well-being and participation of persons with impairments in the family of origin? How did the interviewees handle these barriers and cope with the situation?
As a possible coping strategy, some of the interviewees withdrew or completely broke off contact with the family: “And I just had to say, uh, it tears me apart every time I talk to him [father] on the phone or hear from him. These memories come up again and again. And that also brings me down into the hole. And I just had to say: ‘Uh, no, I don't want any more.’ And that is now about ... 4 to 5 years. Yes. And I don't want to stay in contact with him anymore. Not with mother anyway ...” (B5, female, age 39, psychiatric impairment).
Other respondents forgave individual family members and approached them again gradually: “I'm getting closer to my family again. .... Today I have to say ... Something went wrong ..., but I can forgive my parents again” (B2, female, age 32, psychiatric impairment).
Interviewed persons with cognitive impairment that were confronted with overprotective behavior on the part of their family of origin (mostly by their parents) reacted basically with two coping strategies. Some distanced and detached themselves from their parents. They made it clear to their parents that they wanted to act independently. This could be very emotional for both parties: “For example, she accompanied me to the training location. In the beginning, I was happy, but after a few weeks I said: ‘Mommy, I don't want you to come with me!’ I was talking to a wall, and then I just said: 'Mother, go away!’ And then she cried, but so did I.” (B1, female, age 31, cognitive impairment). Other interviewees became accustomed to given circumstances and accepted them, even when solutions preferred by their parents were not very attractive for them: “And then mum and dad showed me that and said: ‘How about we take you down to C-Street? Then you could live with us at home’ (....) That's when I first freaked out. (....) And now I’m at home and living with my parents. (...) And, yes. I have it actually good.” (A12, female, age 36, cognitive impairment). These types of statements, which were also found for other areas of participation in the verbal data, were coded as coping strategies of acceptance and reframing.
Interestingly, interviewees did not mention professionals at all, such as social workers, physicians, nurses, or psychologists, who could have helped them manage their relationship with the family of origin. It seems that the individuals and the families had to deal with their relationships by themselves. The verbal data revealed a lack of professional family counseling and support from an early age on.
Participation in the context of a relationship
The verbal data provided reports on life in a relationship, as a single person, as a widow, as a divorcee, life in a marriage or registered same-sex partnership, life in a long-distance relationship, life as parents, and life as a childless person. The interviewees reported various types of relationship status, but at the time of the interview the majority of the interviewees lived on their own as single persons.
Participation takes place; facilitators
Life as a single person was accepted by some of the interviewees in a self-determined way, at least for the time being. These interviewees were not actively seeking a boyfriend or girlfriend. They named different reasons for being single: Some persons wanted to wait until the “right person” appeared. Others did not yet feel ready for a new relationship due to the death of or separation from the most recent partner. Some interviewees emphasized that other aspects in their life, such as individual career development, were currently more important to them than having a relationship.
Even though some persons self-identified as voluntary singles, a greater portion of the interviewees had a preference for a relationship. One man with physical impairments stressed the importance for him of having experienced a long-term love relationship with a woman as follows: “That gave me very, very much. At all uh ... just that someone can love me, that is an experience that [breathes in deeply] ... yes, I unfortunately have to say... many disabled ... never ... experience. [speaks slowly] I just know from myself what that, what that uh... causes in self-understanding in, in [seeks words]. Yes, I, I would not be myself if I had not been allowed to have this experience ...” (B8, male, age 51, physical impairment).
The interviewees mentioned the following aspects of a fulfilling and loving relationship: reciprocity, mutual trust, talking together, finding solutions together, and shared activities. Several persons with psychiatric impairments lived together with a partner who also had a psychiatric impairment. Those interviewees stressed that the insider knowledge about their partner with an impairment was a facilitator for the relationship. It ensured that there was a good basis for understanding the interviewee’s daily problems. Psychiatric care was sometimes even the starting point of a relationship: “I finally met my boyfriend in psychiatric care. … That is of course an advantage, because he knows this condition and got to know me under these circumstances. So, he cannot come now and say [speaks with a deeper voice]: ‘Yeah, I didn't know that’ or ‘I didn't know how bad that could be’ or whatever. And um, yes, I get a lot of understanding and support from him” (B4, female, age 50, psychiatric impairment). Further, for persons with cognitive impairment, the social environment could serve as a substantial facilitator for self-responsible and independent sexuality: A11: “There's something nice about being in love, you know. I like it when you pet me, and kiss me, and massage, or something else. Or, I like to sleep with my boyfriend, for example, and having sex. Then, make massages.
I: But you can’t do that if you don’t live together at all, can you?
A11: Well, in the evening, mum and me…So if I invite him home, then I will” (A11, female, age 43, cognitive impairment).
Interviewees brought up different places and opportunities to get to know potential partners besides the already-mentioned psychiatric care setting (for persons with psychiatric impairments). For example, the interviewees mentioned apprenticeships or workplace as good opportunities for making contacts and getting to know future partners. Also mentioned as possible contact options were the Internet or bars and restaurants, where they could flirt with possible partners.
Participation is restricted; barriers
Many interviewees reported that building a love relationship, living in a relationship, and fulfilling their sexual needs was challenging in everyday life. They viewed their participation in the life area of relationships as restricted.
Some interviewees were currently not living in a relationship, but they desperately longed for one. They were involuntarily single and identified several barriers causing them to be in that position: their own impairment, their perceived low value on the partner market, and lack of trust in other people.
Some interviewees thought that their cognitive, physical, or/and psychiatric impairment was an important reason for being single. Disabilities create strong barriers and disadvantages when it comes to relationships. Several persons put this argument forward by situating themselves in a partner market that is structured by the rules of supply and demand. In this market, visual appearance (beauty, physical appeal) and social standing (good education, integration in the labor market) are goods of great importance. They are decisive for an individual’s chances to choose or to be chosen as a potential love or sex partner. Due to their impairment(s), some interviewees thought and experienced that they could not keep up with some or all of the high expectations in this market.
A further barrier was identified on the individual level: a lack of trust in other people due to former negative socialization and biographical experiences. This made it difficult for the interviewees to enter into contact with people and build up a relationship.
Parenthood was a relevant topic in the interviews. Only a few interviewees reported that they had children of their own. Many of them had thought about being parents but decided against it with their partner. For instance, one young man reported that next to his work he had no time and energy for children. As a further argument, children were often costly. Some women with cognitive impairment stated that they had decided not to have children for health reasons. The argumentation of the interviewees with cognitive impairment in the sample suggested that the views of the close social environment (e.g., the family of origin) played a role in the decision not to have children, as was mentioned above.
Full participation in the area of relationships would also imply having sufficient possibilities for and access to sexual activities within a relationship or as a single person (e.g., casual sexual contacts). For the majority of the interviewees, this is not the case. Sexuality was a taboo subject from a social, family, and personal point of view. The interviewees criticized that their sexual needs were not being recognized by society and important reference persons (e.g., family of origin, personal assistants). Even within their circle of friends, some interviewees found that sexuality was considered embarrassing and not discussed. As one interviewee put forward, persons with impairment were often constructed in public and the media discourse as non-sexual subjects with no sexual needs: “But I just think that this is something that public perception misses out on, so to speak: ‘Yes, disabled people, they don't even have these needs, they don't need that at all’. ‘They don’t need sexuality and stuff like that.’ Yes, that's right, that’s also a lot of things that are simply very, very much in people’s minds. Also, how about disabled people is reported in the media ...how this is perceived” (B12, male, age 35, psychiatric impairment).
Due to the difficulty of finding a sexual partner or/and a relationship, some interviewees considered professional sex workers as an option for fulfilling their sexual needs. Those interviewees mentioned sex workers in general but also specialized sex workers who specifically meet the sexual needs of persons with physical and/or cognitive impairment(s), called Berührer/innen (‘touchers’) in German. But neither one seemed to be a valuable alternative for the interviewees, as they would not meet their actual needs: One male interviewee with a physical impairment stated that specialized sex workers would not be able to meet his needs, due to his perception that they would just caress and cuddle him without sexual intercourse. Another man with a psychiatric impairment, after considering visiting a female sex worker, came to the conclusion that he “only” wanted to experience physical closeness such as cuddling and being hugged.
Handling of barriers
The interviewees reported using different coping strategies when confronted with barriers. Some persons used non-functional coping strategies that did not improve and sometimes even worsened their situation. They gave up hope of finding a partner in the near future. They then increasingly withdrew, behaved more passively in the search for a partner, or even avoided places where they could get to know potential partners.
Also in the life area of a partnership, it became apparent that some interviewees mainly focused on personal factors when they tried to identify barriers that hinder participation. Social, material, and structural factors were neglected, and mainly self-stigmatization occurred. The interviewees thought that their personal and physical attributes caused by the impairment were mostly responsible for hindered participation in the life area of a partnership.
Some persons who were living as singles tried to find positive aspects in this status, even though it became clear during the interview that they would have preferred to live together with a partner in a relationship. This coping strategy—which we also identified in other participation areas of life—was coded as ‘reframing.’
A further coping strategy was ‘looking for support.’ Persons with an impairment realized that their chances of finding a relationship were currently poor. For help, they involved their social network; for example, with financial support from their family of origin, they registered with a specialized dating agency for people with impairments.
Last but not least, the verbal data revealed diverse self-determined strategies that the interviewees implemented—without any help from other persons—to overcome or weaken participation barriers in the life area of relationships and sexuality. Some interviewees reported that they did not have any opportunities to have sex with a partner and engaged in self-simulation and masturbation: “Because I need that, too. That’s why I do it in the evening, at home, myself” (A12, female, age 36, cognitive impairment). One man with physical impairment gave straightforward advice to his personal assistant on how she should behave in the morning when he is in bed with his girlfriend to ensure personal and sexual intimacy.
In the area of relationships and sexuality, the social environment, such as the family of origin, plays a crucial role in facilitating or hindering participation. This is especially the case for persons with cognitive impairment, as the data showed. Some barriers could be removed by sensitizing the social environment to the sexual needs of people with disabilities and by creating need-oriented family counseling and support services. Whereas the need for support mentioned above was reconstructed from the verbal data through qualitative-interpretative analysis, in the interviews the interviewees directly identified a personal support need that is of major concern to them. Although there are potentially many ways to find partners (see the section “Participation takes place; facilitators” above), it was very difficult for many of the interviewees to get to know someone. Therefore, the interviewees called for more meeting opportunities or ‘marriage markets’ like singles events and meetups that are inclusive and welcoming especially for people with impairment(s).