Kristín Björnsdóttir, Assistant Professor, University of Iceland, Reykjavík, Iceland
A few weeks ago, I stood in front of a large group of undergraduate students at the University of Iceland. ‘My brother is a retard,’ I said. The students stopped browsing the Internet, updating their Facebook status, all the chattering stopped, and the big lecture hall became very quiet. ‘Yes, my brother is retarded,’ I repeated. One young man smiled and asked: ‘Why? What did he do?’ The students laughed and I smiled back and said: ‘He did not do anything. That’s his diagnosis’. My students did not realize that I was not using the term ‘retardation’ as slang to describe my brother’s (negative) behavior. I explained to the students that it was written in his medical records that he was retarded. We talked about how labels, such as ‘mental retardation’ emphasize people’s limitations and what they lack in terms of abilities and competencies. Eventually the labels are used to describe any type of human and social limitations and often we forget where these words come from.
The students all agreed that the label ‘mental retardation’ is outdated and they would prefer to use the term ‘intellectual disabilities’ to describe people who have cognitive impairments because it is more positive and not commonly used as slang. Does that mean that we are free to use older terms such as ‘retardation’ in a derogatory manner? Many of my students claimed that they meant no harm by using disability labels as slang in everyday use. One student said: ‘I use these words sometimes, but that does not mean that I have something against disabled people. Not at all.’ Another student agreed and said with hesitation: ‘It is not like I would ever say this to a disabled person. I would not want to hurt anyone’s feelings’. And yet another student said: ‘It does not matter what we say, it is what we do’. I have been thinking about my dialog with these students and wondered if they are right. Do actions speak louder than words?
I guess disabled people should be able to lead pretty good lives in Iceland since we have socialized health care and education for all citizens. Also, disabled people had the legal right, to participate in society and to receive support to lead a ‘normal’ life since 1979. Disability policies and legislation also emphasized equality and greater social participation of disabled people for the past 30 years. Sounds good? Looks good? Well, it does on paper. The reality is that there is a big gap between the legal right for participation and disabled people’s experiences in reality. There is a big gap between what we say we are going to do and what is being done. Why is it that we do not do what we are supposed to?
A new study conducted by the University of Iceland showed that only 50% of primary and lower secondary school teachers in Iceland find it important that students with special needs receive their education in the compulsory schools in their neighborhoods as the vast majority of other children do. By law students with special needs have the right to special study support. However, research has shown that students with intellectual disabilities often do not get the study and social support they need, which sometimes results in transfer to segregated special schools far away from their neighborhood, friends, and siblings. At the teachers’ lounge at the university I often listen to my colleagues debate whether the emphasis in teacher’s training should be on theory or practice and if we should teach our student teachers ‘appropriate’ attitudes.
I don’t have the answer. But what I do know is that words and how we use them matter. Words can be hurtful and what we say reflects the meaning we attach to disabilities and disabled people. The words we use often mirror our attitudes and our actions are a reflection of our attitudes. Is it possible that the educational needs of students with disabilities are not being met in inclusive settings because half of the teachers do not think it is important for them to be at their neighborhood schools? Is there a possibility that there is a gap between rights and experiences because of how society perceives disabled people? Tom Shakespeare, in his blog on this page a couple of weeks ago (When realism is critical), called for empirical research on everyday situations of disabled people. I agree with Tom, but I am also going to risk sounding unoriginal by stating the obvious: It is not enough to conduct empirical research we need to put it to use. We have reached a point where researchers need to find a better and more effective way to put their research findings to use in order to counter society’s negative and belittling attitudes. Researchers need to ask themselves how they are going to use these empirical findings for disabled people to ‘experience better, fuller, more included lives’.
A friend of mine, a young man with intellectual disabilities told me once: ‘You know what Kristín? It does not matter if we have legislation that allows us to go places, if we have transport services to drive us places, if we have support staff to take us places, all of this does not matter if the people do not want us there’.