Croatian families also experience intellectual disability stigma, don’t they? | Blog post by Marko Buljevac

Being a person with an intellectual disability or having a member of your family who is a person with an intellectual disability sometimes can be challenging and hard. Some of these challenges are inadequate formal support, lack of information, lower quality of life, and inability to accomplish your life goals. My opinion is that one of the biggest challenges is stigma of intellectual disability.

Why I write about stigma of intellectual disability?

After working for four and a half years with young people with intellectual disabilities (having weekly discussions about life, expectations or just having a great time) I decided to find out what families living with a family member with an intellectual disability say about stigma. This was also the theme of my PhD. The aim of my doctoral thesis was to gain an insight into the perspectives of people with mild intellectual disabilities and family members of people with different levels of intellectual disabilities about stigma. The research questions were about the perceived stigmatisation of people with intellectual disabilities and perceived family stigma. I interviewed 25 people with mild intellectual disabilities and 22 family members of people with intellectual disabilities about their perspectives on stigma of intellectual disability. My findings were very similar to the findings from previous studies from all over the world. They raise the question whether all families face similar experiences of stigmatisation all over the world, and if there are experiences of stigma specific to Croatian family members?

 

Five major themes in the accounts of people with mild intellectual disabilities

According to participants with intellectual disabilities, stigma of intellectual disability is:

1. Being under others’ control (experiencing infantilisation, an inability to make your own decisions)
2. Disrespect or disregard for your dignity (being underestimated, an inability to tell your opinion, being blamed, a disrespect of your right to privacy or right to intimacy, being treated like a source of financial gain for others, family members underestimate you)
3. Attribution of work incompetence and dependence (lower salary, others think you are unable to work or you are less productive than colleagues without intellectual disabilities)
4. Humiliation and devaluation of the person (a mockery of people with intellectual disabilities, parental physical punishment, intimidation by neighbours)
5. Undesirability (being excluded, feeling ashamed, being avoided by peers without intellectual disabilities)

 

Nine major themes in the accounts of family members of people with intellectual disabilities

According to family members, family stigma of intellectual disability is:

1. Being pitied
2. Mothers being blamed by their mothers-in law, sisters-in-law and sisters forbeing the cause of their child’s intellectual disability
3. Expectations and responsibilities imposed on mothers and siblings
4. Devaluation of the person based on having a family member with intellectual disability (fathers being told that they are dads of a ˈshamefulˈ child)
5. Disrespect and discrimination of mothers (being mocked or patronised by other family members)
6. Mothers face discrimination in their workplace or job loss
7. Formal support system showing disrespect (professionals disregard family members’ opinions, indifferent physicians and social workers)
8. A lack of information about support or certain rights
9. Isolation (being seen as undesirable company, excluded by friends and family when your child becomes a teenager)

 

Based on this study, what can we conclude about stigma of intellectual disability within Croatian society?

Some people with intellectual disabilities face devaluation, inability to achieve their life goals and dreams, adult social roles, an experience disrespect, inequality and dehumanisation. Family members of people with intellectual disabilities can face devaluation, different forms of discrimination, disrespect, including from professionals employed in formal support systems and exclusion. Stigma associated with intellectual disability can result in feelings of loneliness and emotional pain.

I believe that the stigma associated with intellectual disability must be talked about. Additionally, adequate support needs to be provided for family members. That is our duty and responsibility as human beings. We must not forget that open discussion is a powerful tool for challenging stigma. We need to talk to each other about our stigmatised experiences, and listen to each other. It is an effective way to understand stigma of intellectual disability and fight it.

 

Context: Intellectual disabilities in Croatia

Being a person with intellectual disabilities within Croatian society sometimes is very difficult. Although many professionals state that the social or human rights models are the dominant models of disability in Croatia during the last decade, in my view the medical model of disability is still the dominant one.  Most people without intellectual disabilities often feel sorry/ pity for people with intellectual disabilities (and their family members) which results in their lower quality of life. They are often unemployed (the special education system does not lead to any employment opportunities) or work in very low paying jobs. Their social networks mainly consist of family members, paid professionals and other people with intellectual disabilities.  Most live in low-income families and are social welfare recipients. Their social integration (I will not say inclusion because we cannot talk about that within Croatian society) is improving because nowadays they can gain certain human rights (for example, they have a right to vote, to get married, to live within society etc.). Also the process of deinstitutionalisation has made them more visible within society but they still do not have access to opportunities on a par with people without intellectual disabilities. They are often treated as second-class citizens and marginalised within society.

 

We also refer readers to two resources:

 –  A 2010 press release by Inclusion International about the continued segregation of people with intellectual disabilities in Croatia: http://inclusion-international.org/press-release-full-story/

 –  A recent summary by mdac (the Mental Disability Advocacy Centre) on the current situation for people with intellectual disabilities in Croatia: http://www.mdac.info/en/croatia

 

By Marko Buljevac

PhD, Assistant Professor

University of Zagreb, Faculty of Law, Department of Social Work