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The influence of disability on family life and other social relationships will now be discussed.

2.3.1.1 Family life and marriage

Ferguson (2001) classifies research (from 1960 onwards) on familial reactions to a child with a disability as focusing either on the nature of parental reaction or on why they have a given reaction. The

nature of parental reactions is either exhibited in their attitudes or in behaviour, or in a combination of both.

Why parents react in certain ways is dictated by their norms and contexts (Ferguson, 2001).

Historically, negative familial adaptation to having a child with a disability dominated literature.

Ferguson (2001), for example, relates a matrix that classified parents of children with disabilities as either:

neurotic, dysfunctional, suffering or powerless. Another study that found that families could develop dysfunctional ways of dealing with a family member’s disability by denying the disability, or through parents becoming overprotective, or even rejecting the child (Carver & Rodda, 1978). This presents a rather negative historical picture on familial coping and disability.

In the past two decades, however, an adaptational model of familial coping with a child with disability has emerged (Ferguson, 2001). Research on families is now centred on three familial responses: adaptive, evolving and active (Ferguson, 2001). These concepts still recognise that positive and negative adaptations can take place, but that stress (adaptation), life course and family routines are now investigated in order to understand familial reactions to having a child with a disability (Ferguson, 2001).

It is now recognised that family life can also positively influence a PWD. Familial adjustment and well-being seems similar in families with or without a child with a disability (Ferguson, 2001). Many studies found that parents report numerous positive familial outcomes when raising a child with a disability (reported in Werner, Edwards, Baum, Brown, Brown & Isaacs, 2009 and Ferguson, 2001). Level of disability, family structure, family income, social support, ethnicity, culture and religion can all play a role in familial coping to a lesser or greater degree (Ferguson, 2001). In terms of family income, for example, Duncan, Swartz and Kathard (2011) found that psychiatric disability could add psychological strain and additional financial burden to families with low income, especially in poor communities. On the other hand, higher family income often provides a means for familial coping with disability (Ferguson, 2001).

Parental and sibling support can positively influence a PWD. Anderson and Clarke (1982) identified sibling support, as well as parental emotional and financial support, as ways in which a person with a disability can be positively influenced and supported. Trute, Benzies, Worthington, Reddon, & Moore (2010) found that the strength in the mother’s psychological coping was associated with successful familial adjustment to having a child with a disability. When mothers also have a positive outlook on childhood disability, familial coping seems to be expedited (Trute, Hiebert-Murphy, & Levine, 2007). It would seem that strong family support can provide valuable emotional support to a person with a disability. It is, however, important to note that family resilience differs and having a child with a disability can place more or less stress on some family units in comparison to others (Ferguson, 2001).

Marriage is, of course, responsible for forming some new families as well. In terms of general statistics, a recent American survey found that 13% of PWDs are married within eight years of leaving secondary school (Newman et al., 2011). This statistics is six percent lower for PWDs in comparison to their peers in the general population. In a study from Bangladesh, the minority of respondents reported that disability was negatively associated with marital prospects, especially for women with disabilities (Hosain, Atkinson, & Underwood, 2002). In the American sample, 29% of young adults with a disability reported

having a child in their past eight years since leaving high school, which does not differ significantly from the 28% for persons without disabilities (Newman et al., 2011). Similar statistics for South Africa could not be found, but it is assumed that similar trends may be present.

Disability can also influence the marriage experience for PWDs and their partners. In an article entitled “Marriage matters: for people with disabilities too”, the authors convey that PWDs also have the need to get married (Miller & Morgan, 1990). They focused their qualitative research on persons with cerebral palsy and found that there were mixed reactions from the parents of couples who wanted to get married. Also, with severe physical disability, the frequency and satisfaction of sexual relationships between spouses can be affected (Miller & Morgan, 1990). Overall, though, the findings from this study seem to confirm that marriage needs and satisfaction between PWDs are similar to their non-disabled peers. Another qualitative study, however, found that dissatisfaction and a feeling of loss could develop over time in marriage partners that became the primary carer for a person with Multiple Sclerosis (Mutch, 2010). A study by Milligan and Neufeldt (1998) again found no evidence of maladaptive motivations for women without a disability to marry a man with spinal cord injury, but rather that numerous individual and interpersonal factors interact to form the necessary commitment for marriage.

A PWD does not just interact within his/her own family, though. The following section will examine more social interactions of PWDs outside of the family environment.

2.3.1.2 Social interactions of PWDs

“Social networks are basic building blocks of human experience” (Pescosolido, 2001, p. 469). Social networks are also related to how people react, confront and experience disability, and also influence health and well-being (Pescosolido, 2001). A person’s community also influences disability, as it is “the place where disability is constructed and experienced” (Kelly, 2001, p. 396). How others view a person has an influence on a person’s identity, or how a person’s self-perception based on community response to him/her.

It also influences the formation on the self, or the way individuals are both linked and separate from their communities (Kelly, 2001).

Linton (2006) explains the term “ableism” (p. 161), which represents discrimination through favouring able-bodied persons. Other authors have explored the concept of normality and the consequences of persons being classified as deviant from the norm (Hammell, 2006). This ties with the concept of ableism, as it describes able-bodied as the norm/ideal. The differences in PWDs are deviant and thus make them inferior (Mackelprang & Salsgiver, as cited in Hammell, 2006). In a South African sample, Davies (1991) confirms that PWDs are more socially isolated than persons without disabilities. Finally, Miller, Chen, Glover-Graf, and Kranz (2009) also found less willingness by persons without disabilities to marry or enter a relationship with a PWD, especially where psychiatric impairment was present.

A study exploring interpersonal stress associated with the interaction between genders found that there was less interpersonal stress in a person without a disability when interacting with the opposite sex with a disability, as opposing to interaction with the opposite sex without a disability (Vilchinsky et al., 2010). This study’s participants were all students. This finding seems counter-intuitive at first, as one would expect more

interpersonal stress between a person without a disability and a PWD. The result is explained by Vilchinsky et al. (2010) by referring to other literature that found that PWDs are often viewed as asexual, which lessens the need to impress the opposite sex for persons without a disability. The traditional perceived gender differences between males and females with disabilities, that were reported by both PWDs and able-bodied persons, were also less distinct in comparison with gender stereotypes in general (Nario-Redmond, 2010).

The body image and self-evaluation of PWDs are often influenced by being physically different. A study focusing on self-esteem of adolescents with physical disabilities has found that both girls and boys have less perceived romantic appeal (King, Shultz, Steel, & Gilpin, 1993). Women with a physical disability report less sexual self-esteem, sexual satisfaction and lower body image than women without a disability in an Israeli study (Moin, Duvdevany, & Mazor, 2009). Men with later onset disability have lower levels of sexual satisfaction and body image than men with congenital disability in a Netherlands-based sample (Kedde & van Berlo, 2006). Nario-Redmond (2010) also found evidence that PWDs perceived other PWDs as more asexual than able-bodied persons.

This discrediting of the sexuality of PWDs may increase the risk of HIV infection, especially since PWDs are often excluded from sex education and HIV prevention programmes, according to a South African study (Rohleder & Swartz, 2009). There seems to be a tension in sex education providers on achieving a balance between the rights of PWDs to be informed about sex, but also on regulating and curbing possibly deviant sexual behaviour, especially in young adults with learning/developmental disabilities (Rohleder &

Swartz, 2009).

Quality social interactions, however, can help PWDs to function with confidence. A literature review was performed by Terpstra and Tamura (2008) to find effective strategies to promote social interaction between PWDs and peers without disabilities in existing inclusive settings. They concluded that peer training could be effective if the training format was easy to implement and likely to have an effective outcome.

Terpstra and Tamura (2008) provide a list of opportunities, training formats, guidelines for selecting strategies and several general strategies that can increase social interaction. Also, as mentioned in Section 2.2.1.2, contact with a PWD can produce a more positive attitude towards PWDs in general. This, in turn, can generate more positive social interactions and increase social confidence for and with a PWD.

For children who are able to attend school (many children with disabilities don’t), it is most often in the educational setting that a child with a disability will form most of their first social relationships outside of their families. This period has the potential to either build or undermine the social development of a child with a disability.