Article

Personal experience and perception o f abuse in people w ith intellectual disabilities Journal o f Intellectual Disabilities 2014, Vol. 18(3) 249-269 © The A u th o r(s ) 2014

Z d ra v k a L e u ta r University o f Zagreb, Croatia

Josipa V it lo v University o f Zagreb, C roatia

Reprints and permission: D O I: 10.1 177/1744629514538876 jid.sagepub.com

V g /o A o t

Iv a n L e u t a r University o f Mostar, Bosnia and Herzegovina

Date accepted: 17 A p ril 2014

A bstract T his a rtic le presents a q u a lita tive stu dy designed to gain insight in to personal e xpe rie nce and p e rc e p tio n o f abuse in p eople w ith in te lle ctu a l disabilities. T en m em bers o f th e org an izatio n fo r people w ith intellectu al disabilities in Z adar, C ro a tia , w h o have a diagnosis o f lig h t o r m o d e ra te in te lle ctu a l disability, w e re included in th e research. Analysis o f responses sh ow ed th a t m o st p articip a nts had e xpe rie nce d psychological, physical and financial abuse. T he m o s t fre q u e n t p e r­ p e tra to rs o f abuse w e re id e n tifie d by p a rticip a n ts as friends, acquaintances and v o lu n te e r carers. Typical sites fo r th e e xp e rie n ce o f abuse w e re school, social c lu b s /s u p p o rt in s titu tio n s , th e s tre e t and th e urban e n v iro n m e n t. M o s t p a rticip a n ts seek assistance and s u p p o rt in cases o f abuse th ro u g h discussion w ith th e ir loved ones, m o s tly th e ir parents and frien ds. In a d d itio n to such in fo rm a l relationships, som e p a rticip a n ts m e n tio n e d th e im p o rta n c e o f fo rm a l fo rm s o f su p p o rt.

Keywords abuse, people w ith intellectu al disabilities, e xp e rie n ce o f abuse, assistance and s u p p o rt in cases o f abuse, abuse p re ve n tio n

In tr o d u c tio n

The risk of abuse against people with disabilities, particularly people with intellectual dis­ abilities, has been referred to in the literature (Leutar et al., 2011; Milic Babic, 2009; Sequiera

Corresponding author: Zdravka Leutar, D epartm ent o f Social W o rk , Law Faculty, University o f Zagreb, Nazorova 5 1, Zagreb 10000, Croatia. Email: zleutar@ pravo.hr

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and Hollins, 2003; Turk and Brown, 1993; Walter-Brice et al., 2012), so in this study we wanted to take into consideration the experience and perception of abuse in people with intellectual dis­ abilities. Therefore, we start from the basic concepts, presenting some of the findings of some previous research and, in their light, we discuss the research we present in this article to see its contribution for this thematic field. The term we are using is ‘intellectual disabilities’, although we recognize that it is not fully accepted, which underlines the fact that definitions are not regulated (Not, 2008). According to contemporary understanding of people with intellectual disabilities, the beginning of the diffi­ culties must be before 18 years of age with significant below-average intellectual functioning accompanied by significant limitations in adaptive functioning of at least two of the following skill areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-orientation, functional academic skills, activities in leisure time, health and safety (Diagnostic and Statistical Manual of Mental Disorders (DSM), 1996). Based on the definition of the American Association on Intellectual and Developmental Disabilities, Harris (2006: 58) states the following assumptions for the modem understanding of people with intellectual disabilities associated with these DSM-IV criteria: limitations in functioning must be considered in context with the environment of the particular person; the assessment must include cultural and linguistic diversity as well as differences in communication, sensory-motor factors and behavioural factors; one person’s limitations (disabilities) coexist with his/her abilities; the importance of describing and recognizing one person’s limitations is reflected in the goal of creating a profile of required support since adequate support during a continuous period results in significant improvements in the daily functioning of people with intellectual disabilities. In the Republic of Croatia, the expression intellectual disability refers to a condition which sig­ nificantly limits participation in social life and is associated with arrested or incomplete development of intellectual functioning, detennined on the basis of medical and psychological deficiency and social expertise. To fully understand the issue of violence against people with intellectual disabilities, in Croatia, it is important to understand the legal position of disabled people in Croatia. That is how are their human rights, as well as the right to live without violence, protected by international and national documents relating to the protection and quality of life of people with disabilities and their inte­ gration into the community. The Law on Ratification of the UN Convention on the Rights of Persons with Disabilities and the Optional Protocol to the Convention on the Rights of Persons with Disabilities (Official Gazette, International Agreements, 6/07, 5/08) in Article 16 emphasizes the obligation of state parties to take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside of their home, from all forms of exploitation, violence and abuse, including aspects related to gender. Furthermore, the Convention emphasizes that state parties should put in place effective legis­ lation and policies, including legislation and policies aimed at women and children, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, criminalized. Croatia is obliged to take all measures necessary for rehabilitation, recovery and social reintegration of persons with disabilities who become vic­ tims of any form of exploitation, violence or abuse. Before and after the enactment of this law, a number of other laws, rules and strategies had been passed, all of them emphasizing the necessity of recognizing the problem of violence and initiating social action to combat abuse.

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The Croatian government also adopted the Law on the Ombudsman for People with Disabilities (Official Gazette, 107/07), and according to this law, for the first time in Croatia the ombudsman for people with disabilities was appointed. It also established the Office of the Ombudsman for People with Disabilities whose scope of work also includes the care of the protection of human rights of people with disabilities, namely combating all forms of violence, timely public reporting on violations of the rights of people with disabilities and, in case of getting information about a particular act of violence, submitting a report to the competent State Attorney’s Office and pro­ posing measures to protect the rights and interests of the person who is threatened by violence. The national program for the protection and promotion of human rights for the period 20082011 (Official Gazette, 119/07), which the Government adopted in November 2007, reports the analysis of specific areas of protection and promotion of human rights and determines priority areas for action in issues connected with people with disabilities. The measures relating to the protection of the rights of people with disabilities include sensitizing the public to the needs of people with disabilities and promoting their rights through the organization of conferences and campaigns on the needs of people with disabilities; organizing media campaigns to combat discriminatory and stigmatizing behaviours that interfere with or prevent the participation of disabled people in society; conducting research on the human rights of people with disabilities in all areas of life. From 1 January 2009, Anti-Discrimination Act (Official Gazette, 85/08; 112/12) has been effec­ tive in Croatia, prohibiting unequal treatment of people in general and on the grounds of disability in particular. The Act applies to all actions of state bodies and bodies of local and regional gov­ ernment, legal persons with public authorities and all legal entities and individuals, in particular in the area of accessibility, that is, availability of services. Today in the Republic of Croatia, the new Law on Protection from Domestic Violence from 2009 (Official Gazette, 137/09; 14/10; 60/10) is in force, which classifies domestic violence as a misdemeanour, and Criminal Law (Official Gazette 144/12) classifies it as a criminal offence. The National Strategy for Protection against Domestic Violence for the period from 2011 to 2016 (Nacionalna strategija zastite od nasilja u obitelji za razdoblje od, 2011), Act 6, pays special attention to people with disabilities, especially women with disabilities, in terms of care and support in case of domestic violence. Some of the measures clearly state the strategies of protection against domestic violence, such as providing appropriate treatment, and the improvement of inter­ agency cooperation in the protection of victims of domestic violence. It is necessary to improve the establishment of psychosocial treatment of perpetrators of domestic violence as part of comprehen­ sive care for victims of domestic violence and combating domestic violence in Croatia. The impor­ tance of continuing education of professionals is emphasized, because only an appropriate level of their training and expertise can ensure appropriate treatment for victims who belong to a vulner­ able group. The Law on Police Duties and Powers (Official Gazette, 76/09) introduced provisions on police cooperation with various authorities, organizations, communities, non-governmental organiza­ tions, civic organizations and citizens to develop partnerships in the prevention and detection of illegal behaviour and the perpetrator and a particularly considerate treatment of children, minors, elderly and infirm people, people with disabilities and victims of criminal acts and violations. The Law on Education and Rehabilitation Activities (OG, 124/11) in Act 2 states that the State will insist on the promotion of the rights of children with developmental disorders and their parents and people with disabilities within society. Public work should be focused on exploring and sensitization of the public to raise awareness about the rights of people with disabilities and the application of the principle of equalization of opportunities in specific areas of activity, including

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promotion of the protection of persons with disabilities and the realization of human rights and fundamental freedoms on an equal basis with other persons. Pursuant to Article 6 of Health Care Act (OG 150/08; 71/10; 139/10; 22/11), the Minister of Health and Social Welfare adopted a Development Plan for public health for the period 20112015. It is an important document for people with disabilities because of its goals to make the population in Croatia more sensitive and more adaptive to changes, whose purpose is equalization of opportunities for people with disabilities; to create conditions for active inclusion and equal participation of people with disabilities in society, with respect to their inherent dignity and special interests; to prevent discrimination and strengthen all forms of social solidarity; to ensure the highest level of modem methods of care; to ensure access to all rights and their exercise without discrimination; and to improve and strengthen the protection of the rights of people with dis­ abilities and children with developmental disorders. On the 16th of May 2013, the Government of the Republic of Croatia made a decision on the establishment of the Croatian Government Committee for People with Disabilities (OG, 60/13). Being an expert advisory body of the Government, the task of the Commission is to make pro­ posals, give opinions and offer expert explanations on the status, protection and rehabilitation of people with disabilities and their families and to carry out activities aimed at their welfare. The laws related to human rights affect all areas of life of individuals, and so of people with disabilities, requiring the provision of equal opportunities for all persons in the community. Abuse is a complex issue and penetrates into all levels of human existence. In Croatia, domestic abuse was first mentioned in 1998, in Family Law (Josipovic et al„ 2008). Many researchers have investigated the subject of abuse in recent years and given a number of definitions (Grossman and Lundy, 2008; Martin et al„ 2006; Mitra et al., 2011; Leutar et al., 2011; Najman Hizman and Leutar, 2012; Smith and Strauser, 2008; Swedlund and Nosek, 2000). According to one view, abuse is the use of physical or mental force against another person that results in a violation of some of the protected values of that person and the community at large. Thus, the use of power against another person threatens or directly violates his/her life, health, body, safety, and so on. According to some authors, abuse is every influence on another person that gives rise to a sense of fear, uncertainty and dependence in that person (Derencinovic and Getos, 2008). Abuse can take many forms. In this study, the typology of the author Rusac (2006) will be used, where we distinguish psychological/emotional, physical, financial/material and sexual abuse and neglect. Psychological/emotional abuse includes the dehumanization and disparagement of people with intellectual disabilities by verbal or non-verbal conduct which lowers their self­ esteem, for example lying, mockery and threats. Physical abuse includes any act of abuse, regardless of whether it results in physical injury or not, for example hitting, pushing and slapping. Material/financial abuse includes the manipulation or exploitation of monetary resources, including fraud, forgery, blackmail, abuse or use of real estate without the consent of a person with intellectual disability. Sexual abuse includes various forms of sexual behaviour, abuse and harassment (sexual maltreatment, attacks and embarrassment) without consent and against the will of a person with a disability. In the case of people with intellectual disabilities, we often find neglect as well, which is related to their specific needs. It includes carelessness about hygiene, diet and regular treatments.

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Significant research on the association o f disability with increased risk of abuse began only after the 1960s, when studies found a close relationship between the various forms of abuse experienced by people with intellectual disabilities and their level o f exposure to scenes o f abuse (HomerJohnson and Drum, 2006; Josipovic et al., 2008). According to a number o f expert estimates from abroad, abuse against people with disabilities is more common than abuse against people without disabilities (Bryen et al., 2007; Hollomotz, 2012; Hughes et al., 2012; Jones et al., 2012), and the actual situation has still not been established or sufficiently explored. Although some o f our findings reveal that people with intellectual disabilities are at as much as 4 to 10 times greater risk from abuse, abuse against them often goes unreported and in cases where it is reported, it is often the case that the perpetrator bears fewer consequences than the perpetrators o f similar crimes committed against people without intellectual disabilities. Gen­ erally, due to the small number o f reported cases, legal leniency and the inability o f people with intellectual disabilities to seek help or press charges, it is not surprising that they become a frequent ‘target’ o f abusers. In addition, this problematic situation is further exacerbated by the fact that people with disabilities experience abuse at the hands o f those without disabilities, which leaves behind long-term trauma regarding their future contacts with the general popula­ tion (Bryen et al., 2007). The research shows that abusers are for the most part people known to the victim or family members (Bryen et al., 2007). Perpetrators appear to choose people with intellectual disabilities for their victims as they find them less powerful, more sensitive and unable to sue them. Victims seem to be more often women and offenders more often men (Josipovic et al., 2008). However, although abuse against men with disabilities is a less explored area, there are studies that suggest that abuse against men with disabilities is approximately as frequent as against women with disabilities. From a study where 78 men with physical and intellectual disabilities were examined, it appears that men experience the same forms o f abuse as women and that such abuse is often unrecognized (Saxton et al., 2004, cited in Milic Babic, 2009). The problem of abuse against people with intellectual disabilities is virtually unknown in the Croatian literature. In Croatia, the first research in this field was carried out by Josipovic (2006), where she examined the prevalence and forms of abuse against people with disabilities. In a study conducted with 59 patients in Zagreb and in the Medjimuije region, it was found that more than half (51%) had experienced some form o f abuse (Josipovic et al., 2008). As research on abuse against people with intellectual disabilities in Croatia is rare, it is necessary to continue research on these issues. Thus, within the context o f previous knowledge, we wanted to approach people with intellectual disabilities themselves as participants o f this study and investigate their experience with abuse.

R e s e a rc h a im s The overall objective o f the research is to gain insight into the personal experience and perception o f abuse among people with intellectual disabilities. In accordance with this general aim, specific goals were set. The research questions were: 1. 2. 3. 4.

How do people with intellectual disabilities perceive abuse? What are the abuses that people with intellectual disabilities experience? What forms o f assistance and support do people with intellectual disabilities consider necessary in cases o f abuse? What can people with disabilities do in the fight against abuse?

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M e th o d o lo g y Participants

Participants in this study were male and female adults who are members of an organization for helping people with intellectual disabilities from Zadar. Ten members with a diagnosis of mild and moderate intellectual disability (six with moderate and four with mild difficulties) participated in the research. People with severe and profound intellectual disabilities did not participate in the study because they have difficulties in answering questions. Of the 10 participants, 8 were male and 2 female. The average age of participants was 29.6 years, with the youngest participant aged 25 and the oldest 39 years. All were single and living with their families. All participants had completed special elementary school and four were trained for specific vocations (assistant textile technician, assistant plumber and the remaining two being assistant knitters). Six were employed at a shopping centre, and the remainder did not work. Research procedure

Data were collected in direct interviews with participants about their personal experience, per­ ception of abuse, support and the prevention of abuse against people with disabilities. Interviews were recorded using a dictaphone. A memo was sent to the selected association, with an explanation of the aims and purpose of the research. After receiving approval from the association, the research was conducted in accordance with the previously announced and approved procedures. Participants were asked to participate in the research, and we offered them the right to decide whether they wanted to participate or not. Also, we pointed out to them that we would protect their privacy and the confidentiality of their personal data and stressed the possibility of withdrawal if, for any reason, they would not want to answer certain questions. The participants who lacked the capacity to consent and were under guardianship also needed their guardian’s approval for participation in the study. The research was carried out in March 2011, in the Association, at a time when the members usually gathered on the association premises. Individual interviews were conducted in a separate room within the Association, with each participant. Questions were open ended and efforts were made to approach the participants in an appropriate way and to clarify the content of the questions in a way suited to them, so that they could understand exactly what they were asked. Ethical implications

It is of utmost importance to create a mutual relationship of trust at the beginning of the interview (Lafferty et al., 2012). A personal meeting before the interview helps to resolve fears in persons and potential stigmatization (National Disability Authority, 2002). So we used to visit the Asso­ ciation beforehand to meet the participants and create a relationship of openness and acceptance by informal conversations. To conduct interviews, it was necessary to obtain the consent of the ethics committee at the Department of Social Work, Faculty of Law in Zagreb. At the beginning of the interview, it was explained to the participants that the interview would be recorded. Each research participant was guaranteed confidentiality. Participants were informed that at any moment they could drop all discussions and have the right not to answer further questions if they so desired. At the end of each interview, each participant was asked if he/she wanted to say anything else and how he/she felt after the conversation. Each interview was recorded using a

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dictaphone after the verbal consent of research participants had been obtained. We sought to provide an open and friendly atmosphere and comfortable rooms, where the members of the Association like to spend their time. We also provided the presence of professionals and parents (of course in the nearby areas) in case some unpleasant situation occured while talking about abuse. It is important to stress that the researchers provided psychosocial support for those interviewed during the whole course of conversation. As for the perpetrators mentioned, it was agreed with each victim how to report their perpetrators. D a t a a n a ly s is

The procedure of qualitative analysis with the open coding method was used for processing the data. This coding consisted of three different procedures. The first step in data processing was to edit raw data by annotating those utterances and parts of utterances relevant to the issues to be studied, a procedure which determined the codes of the first order. Related terms were then grouped into categories: each first-order code was attributed a relevant tenn as with the second one in order to emphasize the essence of each textual unit. The final step in data processing was to join related concepts into categories and carry out their analysis (Mesec, 1998). C h a r t 1. E xam ple o f data p ro cessing. S ta te m e n ts o f p e rs o n s w ith in te lle c tu a l d is a b ilitie s a b o u t th e ir

No.

p e rc e p tio n s o f v io le n c e

1

T h e y say ugly th in g s t o m e, th a t 1 s m o k e and th a t I’m stu p id te ll

C o n c e p ts

m e s o m e boys and th a t 1 have a d ic k to ld m e o n e g irl fr o m D ik lo .

2

I t ’s aggressive b e h a v io u r - m o c k e ry , causing s e rio u s b o d ily in ju rie s , causing bruises. (7)

3

•

M o c k in g

•

In flic tin g h a rm

•

M o c k in g

(5)

W h e n s o m e o n e beats y o u up, w h e n s o m e o n e m o c k s , w h e n s o m e o n e harasses so m e o n e . (8)

•

H ittin g

•

M o c k in g

•

M a ltre a tm e n t

An example of the next step in data processing can be observed in Chart 1: C h a r t 2. Jo in in g re la te d te rm s in to c a te g o rie s - an e x tr a c t o f e d itin g p ro c e d u re a c c o rd in g t o th e level o f a b s tra c tio n . Level I

Level II

Level III

W h e n s o m e o n e th re a te n s yo u . ( I )

•

T h re a t

P sychological

T h e y say ugly thin gs t o m e, th a t I s m o k e and th a t I’m s tu p id te ll m e

•

M o c k in g

so m e boys and th a t I have a d ic k to ld m e o n e g irl fr o m D ik lo . (5)

•

M a ltre a tm e n t

•

S ho u tin g

. . . w h e n s o m e o n e m o c k s . . . (8) It’s aggressive b e h a v io u r. . . m o c k e ry . . . (7) . . . w h e n s o m e o n e harasses s o m e o n e . . . (8) W e ll, it m ay be v e rb a l v io le n c e . . . w h e n th e y s h o u t . . . (2) W h e n s o m e o n e c o n s ta n tly yells . . . (4) . . . w h e n s o m e o n e . . . argues and sh o u ts. ( 10)

Example 1. Defining concepts and categories.

vio le n c e

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Psychological abuse: Psychological abuse includes the dehumanization and disparagement of people with intellectual disabilities through verbal or non-verbal conduct which reduces their self­ esteem (Rusac, 2006). Based on the analysis of the data, we can see that the participants in our research spoke about the following essential forms of psychological abuse (Chart 2): 1.

Threat When someone threatens you. (1)

2.

Mockery They say ugly things to me, that 1 smoke and that I’m stupid tell me some boys and that I have a dick told me one girl from Diklo. (5) . . . when someone mocks. .. (8) It’s aggressive behaviour. .. mockery . .. (7)

3.

Maltreatment When someone harasses someone. .. (8)

4.

Shouting Well, it may be verbal abuse. . . when they shout... (2) When someone constantly yells. .. (4) . .. when someone . .. argues and shouts. (10)

F in d in g s a n d discussion

The qualitative analysis of interviews has produced data that relate to how people with intellectual disabilities perceive abuse, what kind of experience they have had with abuse, what kinds of support and assistance they deem necessary in cases of abuse and what people with intellectual disabilities can do to fight abuse. For better clarity of results, we created the thematic maps for each of the four research areas.

Perceptions o f abuse

To gain insight into how people with intellectual disabilities perceive abuse and whether they know what abuse is, participants were asked, ‘What is abuse for you?’ Analysing the answers of the respondents, two categories were obtained (Thematic map 1). P sychological abuse. Psychological abuse includes dehumanization and disparagement through verbal or non-verbal conduct which reduces the self-esteem of the victim (Rusac, 2006). Some par­ ticipants perceive abuse as psychological, describing it in various terms such as threat (‘When someone threatens you. (1)’), mockery (‘They say ugly things to me, that I smoke and that I’m stupid tell me some boys and that I have a dick told me one girl from Diklo. (5)’, ‘ . . . when some­ one m ocks... (8)’, ‘It’s aggressive behaviour... mockery. .. (7)’), maltreatment (‘When someone harasses someone... (8)’) and shouting (‘When someone constantly yells... (4)’, ‘ . . . when some­ one ... argues and shouts. (10)’).

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M a p I.

Physical abuse includes any act of physical abuse, regardless of whether it results in physical injury or not (Rusac, 2006). Participants in this study perceive abuse through various forms of physical acts. So they cite inflicting harm (‘ . .. causing serious bodily injuries, causing bruises. (7)’), hitting (‘When someone beats y o u ...(8)’, ‘Abuse is when people hit each other... (9)’) and pushing (‘ ... when they push... (9)’). The responses reflect the participants’ attitudes toward abuse (‘It’s bad. (1)’, ‘I do not like it, that’s bad (8)’, ‘I do not have such abuse, because it is not good (2)’ and ‘It’s a shame (10)’). These statements indicate that some participants are sensitized to the notion that abuse is negative. However, it is significant that some respondents said they did not know what abuse was, and statements such as ‘ ... I don’t know... (1)’, ‘Ah I don’t know. Ask a little girl in kindergarten, they know (3)’ and ‘I don’t really know (6)’ can indicate a lack of perception due to a lack of sensitivity to abuse. These statements suggest a need to empower people with intellectual dis­ abilities and to enhance their education in terms of sensitization to abuse. However, it is possible that these participants were not willing to talk about abuse, even though they knew what it was. P hysical abuse.

The experience o f people with intellectual disabilities with abuse

In order to gain insight into the experience of abuse undergone by people with intellectual dis­ abilities, participants were asked, ‘Can you remember any occasions when you were exposed to abuse?’ ‘Can you describe your experience?’ and ‘Who did you tell about what happened?’ From the analysis of the participants’ responses, the following 5 categories were obtained (Thematic map 2). E x p e rie n c e w ith v a rio u s fo rm s o f abuse. From the evidence of these interviews, we conclude that people with intellectual disabilities experience physical, psychological and financial abuse.

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Map 2. Physical abuse

‘Some times he hits me, and then 1 hit him (2)’; ‘ . one guy attacked me and almost hit me with a chain, but 1 held his hand and did not let him move i t . .. (2)’; ‘ . . . once a volunteer here was throwing scraps of paper at me . .. (2)’; and ‘Some guys outside hit me from time to tim e. .. (5)’. Psychological abuse

‘No, but there are some things when someone with words, something like that, but now 1 would not involve Frano in it. He often offends me with w ords. .. (2)’ ‘ ... abuse here I have never experienced, only those ugly w ords. . . (2)’ ‘1 remember when I was doing practice at school and one girl threatened me to play war games, and it was forbidden, so the headmaster almost threw her out of school (4)’. ‘And they make fun of me, and I do not like it when someone is making fun of m e ... (5)’.

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it happened, I was mocked at school... (6)’.

‘ ... a bully appeared and told me, “Why do you need that bike for, let devil take your luck away, both from you and from that ugly bike... (7)” ’. ‘ ... she was making fun of me when 1 was at the pool... (7)’. ‘ ... she was acting so rude to me and I was offended. She mocked me and provoked me (9)’. ‘ ... make fun of me and laugh at me... (9)’. Financial form s o f abuse

‘Once 1 dropped 20 kunas and that same girl stole those 20 kunas, she robbed me. 1thought she would give me back those 20 kunas, but she never did that... (7)’. The examination of how people with intellectual disabilities perceive abuse produced the cate­ gories of physical and psychological abuse, while when speaking about their experience with abuse, participants mentioned financial abuse in addition to physical and psychological abuse. Financial abuse includes monetary manipulation or exploitation, including fraud, forgery, black­ mail, abuse, use of real estate without the consent of a person with a disability, and so on (Rusac, 2006). We note that, comparatively speaking, people with intellectual disabilities talk more openly about their experiences of abuse than about their perception of abuse. Similar experiences were reported by the participants in Josipovic’s research (2006) whose results show that 40% of the total number of respondents had experienced verbal abuse and 36% had experienced physical abuse. However, in our research, as well as in that of Josipovic (2006), none of the participants said that he/she had experienced sexual abuse. Nor, when questioned about how they perceived abuse, did any of the participants speak about sexual abuse. It is difficult to assess whether this is really the case or if the participants were afraid to talk about it for the fear of the possible consequences. The results of studies in other countries show that people with intel­ lectual disabilities have a significantly increased risk of experiencing sexual abuse. For example, Powers et al. (2002), on a sample of 200 women with both physical and intellectual disabilities, found that 67% of them had experience with physical abuse and 53% with sexual abuse. Given the sensitivity of the overall problem of abuse, especially sexual abuse, and in the light of these studies, it is necessary to extend further the education of people with intellectual disabilities and, in that way at least, provide them with the right to choose (Petersilia, 2001). The similarity between the research of the author Josipovic (2006) and our study can also be seen in the fact that in our research most participants talked about their experiences of psycho­ logical and physical abuse, while only one participant cited the experience with financial abuse, and none of the participants reported experience with sexual abuse or neglect. Similar results have been reported by other studies (Baladerian, 2009; Lightfoot and Williams, 2009; Powers and Oschwald, 2004). These results indicate that participants were willing to talk about their experi­ ences of abuse during the interview, but the fact must be stressed that they were not advised to discuss specific types of abuse, so all categories of abuse result from their responses to an open question about the experience of abuse. Analysis of participants’ responses provided categories of perpetrators of abuse. The participants experienced abuse with/from friends (‘Fred hit m e ... (2)’ and ‘ ... my friend, a girl... friends... (9)’), acquaintances (‘ . .. one guy from school attacked m e ... (2)’; ‘ ... a girl from P erpetrators o f abuse.

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school... (4)’; ‘ ...som e boys outside... (5)’ and ‘ ...o n e acquaintance from the neighbourhood... (7)’); a volunteer (‘ ... a volunteer in our Association... (2)’) and a hooligan (‘ ... a hooligan... (7)’). This study showed that the perpetrators of abuse are most often friends of their victims, fol­ lowed by parents and then acquaintances, with institutional staff constituting the smallest category. Friends are the most common perpetrators due to the fact that they are aware of how far they can go as they very well know the person they harass. In our research also, friends of victims and their acquaintances constitute the most represented categories of perpetrators of abuse, while one participant mentioned a volunteer from the support association. In contrast to the research undertaken by Josipovic and associates (2008), in our research none of the participants cited parents as perpetrators of abuse, which may be the case, or it may be that participants did not want to talk about parents as perpetrators of abuse. In other studies (Hassouneh-Phillips and Curry, 2002; Nosek et al., 2006; Saxton et al., 2001; Smith, 2008), family members are also mentioned as perpetrators. A special and unique problem is presented by the abuse perpetrated by a project worker within the organization, whom a person with intellectual disability needs as a provider of assistance in various activities. Petersilia (2001) examined the relationship between people with intellectual disabilities and perpetrators of abuse in a sample of 215 cases and found that in 52% of cases the perpetrators were carers. As these results were confirmed by other studies, it was determined that perpetrators were, to a large extent, people who provide care to persons with certain disabilities, family members and peers. Response, in psychology, is a non-specific term which denotes either manifest or latent change(s) in the functioning of an organism or a group of individuals on a physiological, psychological or social plan that appears to mark a change in the organism or its environment, that is, on the occasion of any kind of stimulation (Petz, 2005). When answering the questions, participants recounted the responses of the environment to abuse (‘ ... and then came the headmaster, took his chains and didn’t return them to him ... (2)’; ‘The headmistress warned a volunteer... (2)’; ‘ ... he tells me that I must always be polite and good... (5)’; ‘A teacher would punish those who mocked m e ... (6)’; ‘My mum told about that to the relatives. And tells me to watch out (7)’; and ‘I was told not to listen to them, so when someone teases you just turn around and go away. Laugh and walk aw ay. .. (9)’) and of their emotional reactions after experiencing abuse (‘I feel bad, I c ry ... I can’t stand it when they make fun of m e. .. (5)’; ‘I felt threatened, awful, when it happened... (7)’; and ‘I felt bad, hurt. It wasn’t quite comfortable for m e ... (9)’).

Responses to abuse.

S upport from th e environm ent. Among forms of assistance sought, talking about abuse is mentioned, especially with loved ones who can give support. After experiencing abuse, participants usually trusted the head of the institution they attend (‘ ... I tell the headmistress... I tell her straight aw ay. .. (2)’ and ‘I just told the headmistress of our association about it (2)’), relatives (‘I told my relatives about i t ... (7)’), the mother (‘ ... I told my mum and she said that if it happens again she will go to school. .. (2)’ and ‘ . .. and to my m um ... (7)’), boss (‘ ... I’ll tell the boss. .. (5)’), friends (‘Or I’ll tell Sinisa, he’s my friend... when something happens to me, I tell Sinisa. .. (5)’ and ‘I’d complain about that to my best friends... (9)’) and a teacher (‘I used to tell my teacher about it sometimes. .. (6)’). Victims of abuse may also be given great assistance by various

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societies dedicated to the purpose, which give useful information, consultation services and other forms of assistance, and by health and social services (Rogic-Hadzalic and Kos, 2008). Places w h e re a b u s e is e x p e rie n c e d . Different locations in the surroundings were recognized as areas where abuse occurs. Thus, abuse was observed within the institution ('Outside the association I have not experienced abuse, only in the association ... (2)’), at school (‘ ... only once in school in Vostamica... (2)’, ‘ . .. in practical classes at school... (4)’ and ' . . . such things used to happen in the schools in Gorica and Dubrava ... (6)’), in the streets (‘ . .. when I’m out in the street... (5)’, ‘ . . . from the neighbourhood, there on the street. .. (7)’ and ‘ . . . when I walk down the street... (9)’) and there is urban abuse, in the city (‘ . . . all around the city... (7)’). The participants indicated institutions (school and association) and public spaces (in the street and city) as the most frequent sites where they experienced abuse. Not one participant mentioned her/his home as a place of abuse, which can be linked to the fact that none ever mentioned parents as perpetrators of abuse. It is difficult to assess whether it is indeed so or whether the participants were afraid to talk about it. It is important to note that four participants stated that they had no experience of abuse, ‘I have no experience (1)’; ‘Ah, nothing. And I do not know. Ask your boyfriend (3)’; and ‘Oh, no. Don’t ask me such nonsense (10)’. Such statements could be the result of a lack of sensitivity to abuse and consequent failure to perceive it, lack of abuse in the envi­ ronment or lack of interest in talking about it.

Form s o f assistance a n d s u p p o rt re q u ire d in cases o f abuse

Research participants were also asked questions about the types of assistance and support they considered necessary in cases of abuse, ‘What kind of support do you think is necessary in cases of abuse?’ and ‘What can society do to fight abuse against people with intellectual disabilities?’ The analysis of participants’ responses yielded the following categories (Thematic map 3). C o m m u n ic a tio n a b o u t abuse. Analysis of the answers on the fonns of assistance and support in cases of abuse show that participants think that the problem should be discussed (‘Everyone should talk about i t ... (1)’), victims should confide in someone about their experiences (‘ ... I would tell Sinisa about i t ... He’s my friend (5)’; ‘It would help me to tell it to someone (6)’; and ‘To tell someone who’s close to me about it, Mom o r ... (7)’), and it should be discussed with the perpetrators of abuse (‘Society can also talk with people who create the problem and are violent... Someone should talk with those who cause trouble (2)’; and ‘It would help me to tell them not to do that anymore, that I don’t like jokes, 1 don’t like rough stuff, I don’t like it when people behave badly towards me (9)’). Although some participants stated that abuse should be discussed and that victims should confide in someone about the abuse they experience, unfortunately, abuse is hard to identify for a number of reasons and therefore remains unknown and hidden. Mitchell and Buchele-Ash (2000) state that abuse against people with intellectual disabilities is increasing and give some of the rea­ sons why such abuse is not reported to the authorities. The same authors argue that when a child or adult has a variety of difficulties in communication, he/she at the same time faces obstacles in com­ municating his/her experience to a trustworthy person and therefore abuse often goes unrecorded. Similarly, if a child or adult has a severe intellectual disability, he or she can hardly be expected to describe clearly the act of abuse when an official or person of trust questions him or her about it, which could lead to the closure of the case for lack of evidence or the victim’s inability to supply legally acceptable evidence. Ivey and Ivey (2003) claim that, during such interviews, the basic

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Map 3. counselling skill o f reflecting feelings can be used to establish emphatic alliance to encourage the expression o f emotional experiences related to abuse and o f expressed and unexpressed affective experiences o f trauma and to lighten the burden o f conflicting feelings related to the trauma. This means that communication becomes a means o f developing active coping strategies for confront­ ing abuse, since it leads to the sharing o f feelings, perceptions and thoughts about experiences o f abuse among people with disabilities and those in whom they confide. It is extremely important to make a person feel comfortable freely giving his or her view o f a situation which he or she con­ siders stressful and unpleasant, for example, one associated with the experience o f abuse. One of the techniques that can greatly help the victim during the interview is reflection. Informal support. Informal support is a form o f support that people with disabilities receive from

family members and friends. Participants reported that they find it important to have help from friend(s) (‘My friends often help me to protect me from someone . . . so my friends would take me there, because they take care o f me . . . (2)’ and ‘ . . . I would address. . . to a friend. . . (7)’) and help from the family (‘ . . . o r I would address someone from my fam ily. . . (7)’). Women who are victims o f domestic abuse say that the most common source o f support in adopting strategies for coping with abuse are friends and family members (Du Mont et al., 2005; Goodkind et al., 2004), while male victims o f domestic abuse talk about their experience to these sources o f support to a much smaller extent (Mihorean, 2005; Walby and Allen, 2004). Research conducted in 2009 in Croatia on a sample o f 163 people with intellectual disabilities showed a statistically significant association between community involvement and support factors in crises, among which the most significant factors are talking to friends and experts (Vrh and Leutar, 2012). Some participants

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stated that help from friends is very important to them, while in previous research some partici­ pants named friends as the most common perpetrators of abuse. Form al s u p p o rt Participants stated that in cases of abuse more formal support is needed, such as a psychologist’s assistance (‘ ... or go to a psychologist... (2)’), the emergency services (‘ . .. and ambulance. The ambulance to take to the hospital. (3)’), the police (‘The police should be called at once, the police... (3)’, ‘ ... so that he calls the police then (5)’, ‘Abuse should be reported to the police. .. (7)’) and phone helpline (‘ ... or phone for protection ... (7)’). It is positive that some participants see formal support as a form of assistance in cases of abuse as well. According to Milic Babic (2009), people with intellectual disabilities also mention barriers relating to formal support services (institutions and official bodies for assistance in case of abuse, etc.). These are lack of or insufficient work on informing people with disabilities about the services that exist in the community which can be used in cases of abuse (phone lines, shelters for victims of domestic abuse, programmes for victims of sexual abuse, support groups, etc.), insufficient ser­ vices appropriate for male victims, lack of trained personnel and specialized equipment in shelters, lack of information among the police and community organizations about the unique situation characteristic of people with intellectual disabilities.

Most participants agreed that one way to fight abuse is to undertake preventive activities in their environment directed towards its reduction. Preventive activities the participants saw as operating in the sensibility of the environment to abuse (‘Society should defend people with disabilities. .. (2)’; ‘And it should become well known that a child with a disability cannot defend himself (2)’; ‘To help them, not to ridicule, not to beat them (8)’; and ‘People should prevent abuse, not let it happen, it is best to say calm down, everything will be fine (9)’; and acceptable behaviour in the environment (‘People should behave less badly (5)’; ‘ ... not to behave rudely (6)’; ‘People should behave normally (10)’, and ‘People shouldn’t do bad things. Nowadays people on the streets have guns, knives, terrible (9)’). Chang et al. (2003) and Frantz et al. (2006), conducting research with service providers for people with intellectual disabilities, report that participants in these studies emphasized the advantage in their work of the ability to be given training in knowledge about disability and to establish relationships within a variety of support services in the local community and beyond. As obstacles to the prevention and identification of abuse and the empowerment of disabled victims of abuse, they named the unsuitability of working spaces and sanitary facilities and the lack of the financial support necessary to ensure the quality of sustained action. Preventive activities within the en viro n m en t to reduce abuse.

Some participants felt that the best solution for fighting domestic abuse is avoidance of abuse: T think we should move away from abuse. Abuse should be avoided (2)’ and ‘To avoid abuse (4)’. This indicates the need for additional training and workshops, by means of which people with intellectual disabilities could be empowered and trained how to avoid abuse events. According to Snow et al., 2003, social support greatly affects an individual’s use of active coping strategies, because problem-oriented coping on the part of the individual himself/herself, along with the instrumental support of people in the area, aims at modifying and managing the experience of a stressful situation. A similar attitude is clearly felt by participants in this study, since they expressed the need for support when experiencing abuse. Ansara and Hindin (2010) claim that seeking help concerning violent events is conditioned by socioeconomic status, presence of children in the family and cultural norms about seeking help. Along with the social

Avoiding abuse.

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norms relating to people with disabilities, social support is essential in cases of abuse experi­ enced by people with disabilities. This also makes strategies for coping with abuse more effec­ tive, since the person also gains capital for future situations, if abuse occurs. Social support is also considered the most effective protective factor, the one most frequently resorted to by abused women (Carlson et al., 2002).

Ability o f people with intellectual disabilities to fight against abuse The participants in the research were asked how they can personally contribute to the fight against abuse. The analysis of responses to the question ‘What can you do to combat abuse against people with disabilities?’ gave the following categories (Thematic map 4). R eporting abuse to a p p ro p ria te authorities. Participants generally seemed to believe that in case of abuse it is necessary to turn to the police (‘Call the police (5)’ and ‘ . . . to call the police when they fight’ (10)) or to call a phone helpline (‘ . .. and if something happens, call phone for help (7)’). However, it has been argued that institutions and government bodies dealing with people with intellectual disabilities can obstruct their reporting of abuse against them. Thus, people with disabilities say that institutions do not listen and do not take seriously the problems of the disabled, do not help a person with a disability in identifying abuse, nor provide active assistance related to the experience of abuse. Furthermore, reports of abuse can lead to interference by official bodies in the lives of individuals and thus impair their right to privacy, which can lead to a loss of inde­ pendence, such as being sent to a home or hospital for an extended period or permanently, or it can lead to the loss of custody of a child because the relevant authorities could conclude that a person with a disability is not capable of ensuring the safety of the child (Powers and Oschwald, 2004).

Assistance from fam ily m em bers. Some participants felt that in cases of abuse they may put their trust in family members who are a source of security in life to many (‘ . . . and to tell my family about i t .. . (8)’ and ‘I tell it to my mom (3)’). Stand against abuse. Participants reported some strategies that they see as possibilities in the fight against abuse, and these are defending (T can separate them, the one who wants to attack some­ one’; ‘They have to be defended, so I had a girlfriend who was a disabled person and when we went to the theatre I used to sit next to her to defend her (2)’ and ‘Help others to defend themselves in case of abuse ... (6)’, calming (‘To calm them down when they fight. .. (8)’), intervening (‘Try to stop fighting, so they don’t hit each other. .. (9)’), warning (‘ . .. warn them that it should not be done, that they should not behave as they behave... (9)’), and non-violent behaviour (‘ ... and be nice to everyone, not be violent like them. . . (6)’ and ‘To be good. .. (10)’).

Some participants felt that the solution is in avoiding abuse (‘ .. .but to move away from abuse (6)’ and ‘I think it would be best for me to avoid abuse... (7)’). The majority of participants indicated that some form of assistance was required, which, unfortunately, is not in itself sufficient to solve the problem of abuse. It is important for people to know how to handle cases of domestic abuse, and we believe that people with intellectual disabilities should be edu­ cated in this area, not only by professionals, but also by their own family members. According to the responses of the participants, they often turn to their families for help, so it would be necessary for members of their families to know how to act in such situations.

Avoid abuse.

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Conclusion The problem of abuse against people with intellectual disabilities is a sensitive and very complex topic but also very interesting. According to the data obtained, the participants in this study per­ ceived physical and psychological forms of abuse. Some of the participants are sufficiently sen­ sitized to see abuse as something negative, while others claim they are not aware of what abuse is. These data suggest the need for empowering people with intellectual disabilities and for enhanced education in terms of sensitization to abuse. The results indicate that some of the participants are willing to talk about their experiences of abuse. By the analysis of their reports, data were obtained which show that the participants had experiences of psychological, physical and financial abuse, while none of the participants mentioned experiences of sexual abuse and neglect. Some respondents stated that they had no experience of abuse, which may be the result of insensitivity to abuse (lack of sensitivity leading to a lack of perception of abuse), lack of abuse in the environment or unwillingness to talk about it. As most frequent perpetrators, the participants indicated friends and acquaintances, and one participant mentioned a volunteer, which indicates a particular problem. The most common per­ petrators proved to be friends and acquaintances who are aware of how far they can go as they know very well the person they harass. As for places of abuse, the participants indicated the school, their support institution, the street and the urban environment. We may conclude that the majority of participants seek the assistance and support required in cases of abuse in conversation with loved ones who are mostly parents and friends. In addition to

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informal support, some participants mentioned the importance of formal forms of support, while others see the solution in avoiding abuse. We can suggest that it is necessary to encourage the empowerment of people with intellectual disabilities to enable them to make a stand against abuse. When asked about their own contribution to the fight against abuse, the participants stated that it is necessary to report the abuse to the appropriate institutions, to turn to family members for help and to take an attitude of non-abuse. Unfortunately, these responses alone are not enough to solve the problem of abuse. Finally, we can conclude that it is necessary to introduce enhanced education about abuse against people with intellectual disabilities, to encourage their empowerment and to educate them to take responsibility for the prevention of abuse. It is also important to provide them with a network of support. Prevention through education could be a factor in combating the occurrence of abuse against people with intellectual disabilities and the efforts of professionals and society in general should be directed towards this goal. It is possible to conclude that this study is in accordance with the results of studies that have previously been mentioned in the literature, and in most situations identical results have been obtained. The particularity of this research is that people with disabilities do not even notice the abuse in their surroundings because they are almost accustomed to it: for them, it has become a usual atmosphere, but in fact it is abuse. Another particularity of this research is the fact that participants do not actually talk about sexual abuse. It is possible that participants perceive it as a taboo subject, which they did not want to talk about. In fact, it can be concluded that this has presented a limitation to this research, so there is the need to conduct research on a larger sample and to work more on the preparation of research in terms of gaining trust of the participants. It is very important to emphasize, for the sake of future studies, the importance of confidence that can be gained by longer meetings of researchers and people with intellectual disabilities, and their group discussions on topics that are important for people with intellectual disabilities and they have no other opportu­ nities to talk about them. It is now obvious that we should have spent more time with each participant beforehand to gain their confidence. Therefore, this research provides an important ethical implication when it comes to conducting research with the participants with intellectual disabilities. Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

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