Experienced and Anticipated Discrimination in Persons with Physical Disabilities in Serbia

Introduction

The World Health Organization defines physical disability as “any impairment which limits the function of limbs or fine or gross motor ability” (WHO, 2011). It can be the result of congenital birth issues, accidental injury, or illness. Physical disabilities include impairments which impact one or more major life activities. Goffman (1963) observed physical disability to be a discrediting social identity which influences the sense of personal value. He suggests that it is not the experience of actual limitations that pose the greatest challenge to persons with physical disabilities but rather perceptions of deviance and being labeled as a person with a disability (Goffman, 1963).

Stigma includes three elements: problems of knowledge (ignorance or misinformation), problems of attitudes (prejudice), and problems of behavior (discrimination) (Thornicroft, Rose, Kassam & Sartorius, 2007). There is a great deal of literature exploring attitudes towards persons with physical disabilities. Research of stigmatization was largely conducted in the field of mental illness, but only recently in the field of physical disabilities.

Thanks to progress in human rights, the promotion of social equality legislation and improved access to public spaces in recent decades, people with physical disabilities have attained better social acceptance, greater visibility and more opportunities. But despite this progress, people with disabilities still face stigma and discrimination in many areas of life. The effects of stigma are strong and are manifested in the realm of employment, housing, education, transportation, medical care, making and keeping friends, lower self-esteem and damaged family relationships (Thornicroft, Brohan, Rose, Sartorius & Leese, 2009). Consequences of stigma may take different forms, such as withholding help, avoidance, and segregated institutions (Corrigan & Watson, 2002). There are different expressions of discrimination. Overt discrimination has been reduced nowadays, but new and subtle forms of discrimination exist for different groups in society (Staniland, 2009). Perceived discrimination is defined as the perception of experiencing different and negative treatment just because of belonging to a particular group. Anticipated discrimination refers to the expectation of being mistreated. Anticipation of negative or unfair treatment may result in avoidant behavior of persons with disability (Link, Struening, Cullen, Shrout & Dohrenwend, 1989). Furthermore, expectation of rejection refers to the anticipated responses of individuals which may or may not be the result of actual experiences of discrimination.

The Republic of Serbia signed the Convention on the Rights of Persons with Disabilities and Optional Protocol in December 2007. The Parliament of the Republic of Serbia ratified them in May 2009. ¹ Anti discrimination low in Serbia was passed in National Assembly in 2006. ² The annual reports of the Commissioner for the Protection of Equality³ indicate that the greatest number of complaints on the basis of disability was in the field of labor and employment, access to public services and/or using public facilities, education and professional training, as well as in the proceedings before public authorities. The main findings of the Commissioner for the Protection of Equality was “that even though de jure prohibition of discrimination and promotion of equality of persons with disabilities exist, they are still de facto discriminated in almost all aspects of the private and social life which is, among other things, a consequence of the lasting practice of segregation of persons with disabilities, rooted stereotyped attitudes and prejudice against persons with disabilities. ”⁴

The aims of this cross-sectional study were: (1) to explore extensity (regarding various life domains in which it appears) and intensity of experienced and anticipated discrimination of persons with physical disabilities; (2) to investigate how experienced and anticipated discrimination relate to each other; (3) to explore relations between experienced and anticipated discrimination and certain socio demographic variables (gender, marriage, residence, family type, employment and age).

The study conducted was the first systematic study in Serbia in which participants with physical disabilities were asked to report if they experience discrimination in different areas of life.

Methods

Participants:

The sample consisted of persons with different types of physical disabilities (N=119, N_male=59), of different age (18-70), various levels of education, employment, marital and residence status (see table 1). Sample was designed based on probabilistic principles, and therefore it cannot be considered as completely representative for Serbian population.

Table 1. Socio-demographic characteristics of a sample (N = 119)

Instruments:

In the study, the revised 32 item Discrimination and Stigma Scale (DISC 12), interview based instrument, was applied. DISC 12 was administrated in research exploring experienced and anticipated stigma and discrimination of persons with mental health problems. The scale was adapted for persons with physical disabilities, for the sake of this study. Instead of the term mental illness we used the term physical disability. The question whether a person is improperly treated in mental health services was changed to whether a person is incorrectly treated in services for physically disabled persons. DISC 12 was first administrated in the Aspen Indigo study exploring stigma and discrimination in persons with major depression in 24 European cities. The instrument was translated into the Serbian language, back translated, and approved by the general team of the INDIGO study group. Participants were asked to comment on the extent to which they had experienced discrimination as a result of their disability. The instrument addresses key areas of everyday life and social participation, including work, marriage, parenting, housing, leisure and religious activities. This instrument also considers the extent to which participants limit their involvement in areas of everyday life due to anticipated discrimination. DISC 12 considers experiences of positive as well as negative discrimination, focusing on these events from a service user perspective. In the first part (questions 1-21) the experienced discrimination was explored. Service users were asked about situations when they have been treated unfairly because of their disability (for example: “I would like to ask about times when you have been treated unfairly because of disability?” or “Have you been treated unfairly in making or keeping friends?”) In the second part (questions 22-25), the anticipated discrimination was explored. Participants were asked how often they had stopped themselves from doing things because of anticipated social responses. The service users were asked to give examples of each experience of stigmatization. For each part of the scale participants had to answer if they encountered these situations not at all (score 0), a little (score 1), moderately (score 2), or a lot (score 3). If the question was not applicable for a particular participant, a it was treated as a missing value (for example, the question “Have you been treated unfairly in your role as a parent to your children?” was not applicable if the participants had no children. ).

Procedure:

The scales were administrated by the fourth semester students of the Faculty of Special Education and Rehabilitation at Belgrade University, trained in conducting interview and administrating the scale. The instrument was designed to gather self-reports of discrimination that was actually experienced and anticipated by people with physical disability. Data collection was conducted during 2014. Contacts with participants were obtained through organizations of people with different types of physical disability, in five cities in Serbia (Belgrade, Niš, Kragujevac, Vranje, Leskovac). All participants gave written consent after being fully informed about the study procedures. The participants were informed they could stop answering the questions at any moment and that their responses would be kept confidential and will have no implications for care received. The testing procedure lasted 30–45 minutes. Participants were persons with any disorder of the musculoskeletal system which may have arisen from various causes resulting in reduced mobility (spinal cord injury, muscular dystrophy, multiple sclerosis, amputation, orthopedic cases and cerebral palsy) (Table 1).

Data Analysis:

Pearson correlation coefficients were used to obtain relations between various discrimination scores from DISC12 questionnaire and gender. Parried samples t test was used to investigate differences between experienced and anticipated discrimination of same participants in different life domains. Independent samples t test was used to investigate relations between experienced and anticipated discrimination and participant’s gender, marriage status, residence type. Univariate analysis of variance was used to investigate relations between experienced and anticipated discrimination and participant’s family type and employment status. Linear regression analysis was used to test prediction of anticipated discrimination based on experienced one.

Results

Answers on Discrimination and Stigma Scale were scaled from 0 (not at all) to 3 (a lot) and two types of scores were calculated:

Discrimination extensity, showing the spread of discrimination across various domains of life, regardless of its intensity. This score was calculated as a number of questions on which a participant marked any answer except 1, that is, answers 2, 3 and 4 (a little, moderate and a lot, respectively). Frequencies of a little, moderate and a lot answers were not considered, but just the information if there was, or was not, any discrimination, for every question.

Discrimination intensity, showing the degree of discrimination presence in life, regardless of life domain. This score was calculated as a mean of all questions, for experienced discrimination and for anticipated discrimination. These scores include frequency of different answers (not at all, a little, moderate and a lot), not just the information if there was, or was not, any discrimination, for every question. Not applicable answers (NA) did not affect this score, since they were treated as missing values. For example, if a participant had one NA answer out of 21 questions, mean was calculated based on remaining 20 questions.

Both scores have satisfactory reliability, which is shown, with other descriptive statistics, in table 2.

Table 2. Descriptive statistics for extensity and intensity of anticipated and experienced discrimination on Discrimination and Stigma Scale

Two scores, discrimination extensity and intensity correlate between each other significantly for experienced (r=0. 926; p<0. 01) and for anticipated discrimination (r=0. 789; p<0. 01). We can see that for experienced discrimination two scores are very similar, while for anticipated stigma they differ, which is why we decided to use both in further analysis.

If we consider experienced discrimination distribution across life domains, we can see that highest level was established for realms of starting a family (65. 5%), of family relations (61. 3%), of getting married (45. 4%), of assuming a parental role (45. 3%), privacy (43. 7%), employment (42. 1%), problems with transportation (40. 4%) and of discrimination by professional staff (40. 3%). Detailed distribution of discrimination intensity across various life domains is given in table 3.

Table 3. Responses for experienced discrimination trough different life domains (N (%))

On the other hand, anticipated discrimination was explored in domains such as looking for a job, in applying for education and when engaging in close relationships. The highest level of anticipated discrimination was established in seeking intimate relationships (Table 4).

Table 4. Responses for anticipated discrimination trough different life domains (N (%))

Looking at the difference between experienced and anticipated discrimination intensity, for domains for which it was possible, it was observed that participants anticipated discrimination in intimate relationship more than they actually experienced it. In other two domains no such differences were found (Table 5).

Table 5. Statistical significance of difference between experienced and anticipated discrimination on various life domains⁵

Further on, we tried to analyze whether experienced stigma can predict anticipated one. This was done separately for two scores, discrimination extensity and intensity. Analysis showed that anticipated discrimination extensity can be predicted by experienced discrimination extensity (F_1;117=49. 901; p<0. 01; R²=0. 299). Also, anticipated discrimination intensity can be predicted by experienced discrimination intensity (F_1;117=33. 287; p<0. 01; R²=0. 221). These results indicate that experienced discrimination can be considered as one of possible sources of anticipated discrimination.

As for socio-demographic variables, independent samples t-test didn’t reveal any significant gender difference in scores of administrated DISC subscales. Same analysis showed that unmarried participants had higher anticipated discrimination intensity than married participants (t₁₁₇=2. 236, p<0. 05). Also, it was established that participants who did not live in their own apartment reported higher level of anticipated discrimination intensity (t₁₀₈=-3. 489, p<0. 01) and higher level of anticipated discrimination extensity (t₁₀₈=-2. 086, p<0. 05) then participants who had lived in their own apartment.

In regards to whom participants had lived with (nuclear family, extended family and alone), a significant difference was observed on anticipated discrimination intensity (F_{2, 116}=3. 983, p<0. 05). Scheffe post-hoc tests showed that participants living in extended families anticipated discrimination more than participants living in nuclear families. The highest anticipated discrimination intensity was found in participants who lived in extended families, then in those who lived in primary families, and the lowest intensity was in those living alone.

Univariate analysis of variance showed significant relation between employment status and experienced discrimination extensity (F_{3, 115}= 3. 294, p<0. 05), (anticipated discrimination extensity (F_{2, 115}= 7. 019, p<0. 01) and anticipated discrimination intensity (F_{2, 115}= 3. 395, p<0. 01). For experienced discrimination extensity employed and unemployed adult participants had higher scores retired or students. For anticipated discrimination extensity and intensity, unemployed adult participants had highest scores, retired had lowest scores, while employed and students were in between.

Pearson correlation coefficient showed a negative relationship between age and experienced discrimination extensity (r=-0. 186, p<0. 05), anticipated discrimination extensity (r=-0. 315, p<0. 01), experienced discrimination intensity (r=-0. 199, p<0. 05), anticipated discrimination intensity (r=-0. 314, p<0. 01). Negative correlation coefficients mean that younger participants perceive larger extensity and intensity of both, experienced and anticipated discrimination than older ones.

Disscusion

Participants in this research experienced discrimination in all explored domains, but the mean score was low. However, the consequences of discrimination should not be underestimated because of the accumulation of discrimination experiences. Research in the field of racial discrimination established, for example, that discrimination might accumulate, across processes within a domain (e. g., discrimination in high school may diminish opportunities to attend university) or across domains (e. g. discrimination in education may affect employment opportunities) (Blank, Dabady &Citro, 2004). The results are also in line with findings which point to a high level of empowerment in persons with disability as well as to their better social acceptance and to attitudinal changes among members of the general population. In a British survey it was established that 82% of the sample of persons of general population perceived the persons with disability as everyone else (Stanilend, 2009).

The highest levels of experienced discrimination against persons with physical disabilities in Serbia are reported in areas of family life, starting a family, marriage, role as a parent, privacy, being shunned or avoided, transportation and in communication with professionals.

In our research, younger and unmarried participants have higher scores in experienced and anticipated discrimination, assuming they face more challenges in looking for intimate relationship and starting a family. In general, persons with disabilities have more or less narrowed communications and fewer opportunities to benefit from sexual counseling. In the realms of intimate relationships, the research results show that persons with physical disabilities are not perceived as sexual human beings (Milligan & Neufeldt, 2001). Furthermore, a disability can challenge long-standing family roles. Disabled men have been stereotyped and stigmatized as if they cannot fulfill traditional role of breadwinner (Lewis, 2000). As for disabled women there exists a conviction that they are not able to be mothers and housewives (Addlakha, 2007). They are twice as likely to be divorced ⁽Abu-Habib, 1997). Studies in other developing countries have found similar results (Addlakha, 2007). People with a disability are less likely than people without a disability, to be married ⁽Watson&Nolan, 2011). The difference is evident in the age group 25 to 44. While 48% of the general population in this age group is married, the same figure for people with a disability is 35%. In our research, 75 participants are single compared to 34 married. Possible explanations for the association between marital status and disability are that persons with disability may have greater difficulties in meeting a suitable marriage partner and lower socio-economic status, which contributes to remaining single or having a marital breakdown (Watson&Nolan, 2011).

Another area in which our participants experience discrimination is the role of a parent. Becoming a parent has been often actively discouraged for persons with disabilities, because of possibly giving birth to children with a disability. In a study by Barker and Maralani, disabled parents appeared more likely to have a disabled child than nondisabled parents (14% vs. 3%) ⁽Barker&Maralani, 1997). The reason for this may lie in genetic causes. Also, more disabled parents are unemployed compared to nondisabled parents (48% vs. 22%), a fact which has an impact on raising a child. Kirshbaum et al. pointed to the fact that U. S. child custody laws imply that parents with disabilities are not capable to properly raising a child ⁽Kirshbaum, Taube& Lasian Baer, 2003). In a survey conducted in Montenegro reasons given by respondents indicated that they are less reluctant to become parent are: socio-economic reasons (financial, housing situation), the difficulty in finding partners, prejudices, lack of support services, lack of self-confidence, reasons related to the disability itself (fear of inheriting the disability and fear for their own health) (Federation of the Association of Paraplegics of Montenegro, 2014).

Callow et al. noted that in most U. S. states a parent's disability can influence official decisions about keeping custody of the child ⁽Callow, Buckland & Jones, 2008). Also, access to adoption has been often impeded for persons with a disability by discriminatory practices. But, the research results indicate that predictors of problems in the process of parenting are often the same for disabled and nondisabled parents (Kirshbaum, Taube& Lasian Baer, 2003).

Higher scores in experienced discrimination in the area of family life can be explained by insufficient social support. Although family members may be the main source of support, they also could contribute to discrimination that people with disabilities experience in family life. They can begin to blame others or to withdraw (Corrigan, Watson & Miller, 2006). Family members are more likely to abandon the disabled relatives if they don’t believe that improvements are possible ⁽Howard, Leese & Thornicroft, 2000).

Family members could also be a target of stigmatization themselves. Negative attitudes towards family members of persons with disabilities can be described as “stigma by association” ⁽Mehta & Farina, 1988). This type of stigma can strain the relationship between family members and add to the burden or “experience of care-giving” ⁽Lefley, 1989). Family sometimes describes living with a relative with disability as a type of bereavement ⁽Wahl & Harman, 1989). Parents who have a child with a disability are troubled by what will happen when they are old and not able to care for the child. Anxiety, depression and sleep disturbance are common mental health problems in parents of children with a disability ⁽Szmukler et al., 1996). Some parents see the child as an extension of themselves and may become over-protective and encourage dependency (Szmukler et al., 1996). The paternalistic relationship is also a discriminating attitude, which interferes with the capacity for self-reliance of persons with a disability. On the other hand, it is important to recognize that many people with disabilities receive unconditional support from family members. In our research it was established that younger participants experience positive discrimination mostly in family life. Family members are first to help in coping with the constraints and barriers that disabled individuals may face. Many studies show that family members are satisfied with their role of care giving ⁽Thomas, Bax & Smyth, 1989).

It was observed in our research that employed and unemployed participants experience more discrimination than students or retired participants. Persons with disabilities may experience discrimination in looking for a job or keeping a job. According to Thomas et al., (1989) unemployment can have serious negative effect on the lives of disabled persons, such as financial and psychological stress, feelings of frustration and being constrained to live on state benefits. In spite of anti-discrimination laws in numerous countries, the percentage of employed persons with a physical disability is lower than the same percentage among able-bodied persons. According to the US Census Bureau, out of 15. 6 million adults, aged 16-65, 79. 8% without a disability were employed compared to only 34. 6% with a disability ⁽US Department of Commerce, Bureau of the Census, 1999). They also earned less than the general population. It could be due to inadequate education and training of persons with disability, inadequate employment conditions, inaccessible public transportation, and ignorance about their potential at work ⁽Lonnquist, 1979). Employers are concerned about work performance, absenteeism, the level of monitoring needed and the negative attitude of other employees toward persons with a disability ⁽Kregel & Unger, 1993), so their attitudes could be potential barriers.

In a survey conducted in Belgrade, it has been found that the period after acquiring disability affects education, profession and specific needs of the professional rehabilitation. It is estimated that 1/5 of unemployed persons with disabilities live below the poverty line comparing to general population in Serbia (where 7. 9% of the population live below the line of absolute poverty and 13. 2% below the relative poverty line. Almost 4/5 of the respondents believe that environmental barriers represent the main obstacles to obtain the job. Only 1. 95% of persons with disabilities were employed in organizations that were the subject of research. Center for Independent Living of PWDs Serbia, 2010).

In our research 40. 4% participants experience discrimination related to transportation. Difficulties in transportation can be associated with limited life opportunities (access to work, housing, health care or education facilities, shopping, leisure and recreational activities etc.). The Australian Human Rights and Equal Opportunity Commission identified difficulties in getting to and from work, including lack of physical access and high transport costs as major barriers to work ⁽HREOC, 2005). Accessibility problems include: getting on or off the vehicle, transferring between services, getting to the stop or station, the availability of public transport in the area, badly designed parking spaces, etc. Russell, Quinn, King, Riain&MacGinity, 2008). In Serbia, except the law on the prevention of discrimination, and the prohibition of discrimination in public transportation, laws that govern public transport does not mention accessibility standards. Center for Independent Living of PWDs Serbia, 2007).

In our research 40. 3% of participants report they have been stigmatized in relationships with professionals. In the relationships persons with physical disability often feel patronized or humiliated, excluded from important decisions or lacking the capacity to be responsible for own lives ⁽Grewal, Joy, Lewis, Swales & Woodfield, 2002). Staff attitudes were found to be a key factor affecting disabled people’s experiences of accessing goods and services ⁽Grewal, Joy, Lewis, Swales & Woodfield, 2002). Professionals are also seen as unhelpful in dealing with client’s stigma ⁽Thornicroft, Rose&Kassam, 2007).

Persons with a disability often report experiences of being shunned and avoided. This can be due to ambiguous interaction of persons with and without a disability, in which a person without a disability, experiencing embarrassment, tries to avoid interaction ⁽Oaten, Stevenson & Trevor, 2011). It may be the reason why persons with disability anticipate discrimination even without experiencing many overt acts of discrimination. So in this research it was established that participants significantly more often anticipated than experienced discrimination in looking for close relationships. Experienced discrimination is a predictor of anticipated discrimination with probability of 29. 9% (with count scores) and 22. 1% (with mean score). This can point to conclusion that along with experienced discrimination other factors contribute to the strength of anticipated discrimination.

A limitation of the study is the number of participants which did not allow generalization of results. Also, persons with different impairments were included in one group. Exploring separate experiences of discrimination in persons with different types of physical impairment would possibly yield different results. In the study, the subjective perception of past discrimination experiences is explored. So, distortions in memory may influence the results.

Conclusion

Although persons with disability report a low level of discrimination, they experienced it in many important areas of life. The experience of discrimination, even in low intensity, can have serious effect on the lives of persons with a disability. The main finding is that even with low levels of discrimination persons with disability anticipate it. Belonging to a more vulnerable social group, persons with a disability, as well as their family members, should be supported, especially in improving self-esteem and developing coping strategies. It is also necessary to design an anti-stigma campaign which will lead to the reduction of experienced and anticipated discrimination in important areas of life of young persons with physical disabilities. The high percentage of discrimination experienced in relationships with professionals should be taken seriously since their job is to help people with disabilities and to work with them to find strategies to combat stigma and discrimination.

References