Findings and Initial Conclusions

The DEEPS Project, Centre for Disability Studies, School of Sociology and Social Policy. Findings and Initial Conclusions Working Paper 1: Non-disabled children’s understanding of disability © Angharad Beckett*, Sam Barrett & Nick Ellison. (University of Leeds). *Author for correspondence. Email: a.e.beckett@leeds.ac.uk

The DEEPS Project, Centre for Disability Studies, School of Sociology and Social Policy. We are most grateful to the ESRC for their financial support for this study (ESRC Ref. RES-062-23-0461). Should you wish to quote from this presentation, please cite as follows: Beckett, A.E., Barrett, S. and Ellison, N. (2009) ‘Non-disabled children’s understanding of disability’, DEEPS Project Working Paper 1, School of Sociology & Social Policy, University of Leeds. http://www.sociology.leeds.ac.uk/research/projects/deeps/ (date viewed).

Research questions for this stage of the research • What are primary-age children’s understandings of disability and the lives/life chances of disabled people? • Where, when and from whom are non-disabled children currently gaining their knowledge about disability/lives of disabled people? • Is there any evidence of ‘disabling’ (perhaps even ‘disablist’?), or potentiallydisabling, ideaswithin primary-age children’s understanding of, and attitudes towards, disabled people?

Focus Groups with Children • Focus groups were undertaken with non-disabled children in 6 case study primary schools in England • 2 focus groups/school: one with year 2 (ages 6-7) and one with year 6 (ages 10-11) children • Between 5-9 children per focus group • 35 year 6 children • 39 year 2 children Selection of children: schools were asked to select children who they felt represented their student population (i.e. an appropriate ‘mix’ of children). No child was interviewed without the prior consent of their Headteacher and/or parents/guardian.

Focus Groups with Children Questioning was semi-structured and similar between age groups – we just re-phrased questions as appropriate for the year 2 children. Lines of questioning included: - How do you know if someone is a disabled person? Is it always possible to know if someone is disabled? • Why are some people disabled (i.e. what causes disability)? • Do you think that disabled people are the same as, or different from people who are not disabled? In what ways are they similar or different? We also asked a series of questions about disabled ‘grown-ups’: • Do you think that some disabled people can do well at school? Can they go to college/university? • Do you think that disabled people can have jobs? If ‘yes’ - what kind of jobs? If ‘no’, why might they not be able to have a job? • Do you think that when disabled people are grown-up they can have girlfriends and boyfriends, perhaps get married? • Do you think that disabled people can have children/families? • How do you think non-disabled people treat disabled people? • What do you think it would be like to be a disabled person? We also asked questions to establish where children had ‘learnt’ about disability – At school? At home? From TV?

Focus Groups with Children • Year 6 method: focus group began with an activity – mind mapping ‘disability’, followed by a semi-structured focus group discussion • Year 2 method: focus group began by sharing a story – ‘Harry, Willy & Carrothead’ (story about a child who has a prosthetic arm, joining a ‘mainstream’ school), followed by a semi-structured focus group discussion

Structure of presentation: • Begins by outlining findings of mind-mapping with year 6 and associated thematic analysis • Followed by a summary of key themes emerging from focus group discussions with year 2 and 6 children • Conclusions

MIND-MAPPINGDISABILITY • We begin this presentation by outlining the results of a ‘concept mapping’ or ‘mind mapping’ exercise carried out with year 6 children as an ‘activity’ at the start of each focus group. • Children were asked to close their eyes and then the researcher said: ‘now, I’m going to say the word disability and I want you to think about that word for a minute and then when you open your eyes again, I would like you to draw me a mind-map of all the thoughts that came into your head about disability and disabled people’. • The following slides are examples of mind maps drawn by children. • Mind-maps provided the starting point for discussion – what children said about their mind-maps and subsequent discussion was analysed as part of the qualitative data. But the content of the mind-maps was also analysed using a blend of qualitative and quantitative content analysis. Themes were identified using qualitative analysis and then the occurrence of key terms associated with each theme was quantified.

Mind-Maps School A

Mind Maps School B

Heather Mills had lost half her leg in an accident. This happened when a police motorbike came face to face with her. This didn’t stop her dancing though! She went on “Strictly come dancing” Some people are temporarily disabled which means they have been in an accident and hurt themselves 5 out of 100 people have a disability wheelchair. Steven Hawkins is a Genius. Disabilities Some people may sound a bit odd when they talk but it’s because it sounds right in their head but it comes out a bit odd. Paralympics Tiger Woods It doesn’t matter if you have an impairment, you can still achieve your dream. Mikey off Big Brother Penny Pocket from Balamory All spellings as in the originals! School C

They always need someone with them Make sure no-one takes there place. Careing. warmth Hospital Careing Wheel Chairs Disability neck Bandages Look out for them frames legs casts Arms Helping disabled people shopping Walking Sticks Helping across the road Without legs Looking after Mind Maps School D

cancer blinde Sorry for them Heart problems braindamidge chuma Disability Weel chare Down stindome Can’ts work dowfisam difficulties Learn disabilies Mind Maps School E

Wheil Chair The can’t do the same thing as us They suffer ADHD Learning Disability Downsindrome Behavior problems Feel sorry Astma OCD Dislexia Mind Maps (MM) School F

MM Thematic Analysis • Most frequently occurring theme was a tendency towards ‘medical model’ understanding – this was demonstrated by reference to: • particular types of impairment (112 refs) • aids – wheelchairs no.1, closely followed by zimmer-frames (38 refs) • hospitals/medication/treatment (27 refs) The Open University provides a really helpful summary of the medical model for anyone less familiar with the medical model and its ‘problems’ – please follow this link:http://www.open.ac.uk/inclusiveteaching/pages/understanding-and-awareness/medical-model.php

MM Thematic Analysis • Next theme (related): disabled people are people who have ‘different’ bodies • ‘bodies don’t work properly’ (3 refs) • references to ‘Body Shock’ type TV programmes – e.g. ‘more legs & more arms’ (this is a reference to Channel 4’s Body Shock episode: ‘The Girl with Eight Limbs’); ‘tree man/half man half tree’ (this is a reference to Discovery Channel’s My Shocking Story episode: ‘Half Man, Half Tree’, also shown as part of Channel 5’s Extraordinary People series) (5 refs) http://www2.five.tv/programmes/extraordinarypeople/ http://www.channel4.com/programmes/bodyshock

MM Thematic Analysis • Next theme: disabled people as ‘incapable’ or ‘unable’ • can’t…walk/talk/do the same things as us/control themselves/work(38 refs of this type)

MM Thematic Analysis • Next theme: ‘tragedy model’ thinking • Non-disabled children felt that it would be sad/horrible/lonely/hard to be a disabled person (17 refs) • They associated disability with pain and suffering (6 refs) • ‘Feeling sorry for disabled people’ – was the general theme here • Whilst this may not, at first glance, appear to be the most ‘sinister’ of themes – there is a wealth of literature devoted to two topics: • The important difference between ‘sympathy’ and ‘empathy’ and why empathy is the more powerful of the two. In brief, sympathy is usually associated with sentiments of ‘pity’ – this is often rejected by disabled people as disempowering. Empathy occurs when non-disabled people try to imagine how a disabled person is feeling. It involves understanding and ACTION, not just pity. • Tragedy model thinking is considered to be very problematic when it occurs within the adult population. For interesting critiques of Tragedy Model thinking please see the following links: http://www.leeds.ac.uk/disability-studies/archiveuk/swain/affirmative%20chapter.pdf (you may need to cut and paste previous link into your browser for it to open) or http://blobolobolob.blogspot.com/2007/03/tragedy-model-of-disability.html

MM Thematic Analysis • Next theme: children were aware of bullying/negative attitudes towards disabled people (10 refs) and stated that this was a ‘bad thing’ • They stated that they knew that disabled people are sometimes ‘laughed at’ and called names, and one child thought that disabled people might not be ‘loved as much’

MM Thematic Analysis • Next theme: how ‘we’ (non-disabled people) should treat disabled people (12 refs). Very varied set of responses. Children said: • We should ‘care for them’ and ‘look out for them’ • Disabled people should have friends (implied – they don’t always) • With help they can do everything (a few comments of this type were a little bit ‘overly optimistic’, suggesting a lack of full awareness of impact of a disabling society) • There should be more things in the playground for disabled children • ‘We should not treat them as different’ and ‘We should talk to them fairly’

Qualitative Responses • Discussions in focus groups with both year groups largely echoed the themes from the mind-mapping exercise • But in addition, further questioning elicited the following types of response:

Qualitative Responses • First thing to note: many children in year 2 found it difficult to distinguish between injury ‘broken legs’ and permanent impairment, but not all, so there is no general ‘trend’ here • By year 6 most children understood this distinction…they explained the causes of disability either in terms of genetics ‘Would it be something to do with the mother, like? Would she have something and she’s passed it down onto the kids?’ (quote) OR accident ‘Could you, like, become disabled in a car accident?’ (quote) • BUT, year 6 children were not always entirely clear on this point and they found the illness/disability distinction more problematic e.g. asking ‘is cancer a disability’? (quote)

Qualitative Responses • ‘Can’t do things’ theme: at year 2, children focused upon disabled people being ‘unable’ to do things that are familiar to them Angharad, picking up on discussion re. wheelchair users not being able to ‘do stuff’: ‘So, what might someone who uses a wheelchair not be able to do?’ Child year 2: ‘A roly-poly’ However, after sharing a story about a disabled child who attends a ‘mainstream’ school, a non-disabled child made the following observation: “It’s interesting because it’s amazing how people can do things even if they don’t have a proper arm.” Child Year 2. Suggestion: stories can play an important role in changing attitudes…

Disabled people & education There was not a great deal of discussion of this, except at School C, during the year 6 focus group: Angharad: do you think that disabled people can do well at school, maybe go onto college or university? Many children: yes! Angharad: is that all disabled people? (…) Child 1: some people don’t choose to because university is quite a big place and they could get mocked quite a lot. Angharad: so you think that they might be quite nervous about going to somewhere like a university? Child 1: yeah – very. During wider discussion it was clear that the children felt that in a small context like their school, a disabled person could feel welcomed and respected. But ‘out there’ in the wider world, in a ‘big place’ like a University, they felt that a disabled person might be more at risk of experiencing ‘nastiness’.

Disabled people &relationships Yr 2 children – focused upon ‘practicalities’ as they saw them… “If two people are disabled they wouldn’t be able to get married because the disabled person wouldn’t be able to get a ring that fits.” Child Year 2. One child carefully explained that disabled people cannot get married because they would be unable to ‘consummate’ their relationship. This child also ‘demonstrated’ how the disabled person might be unable to perform the sex act – he was very serious throughout: In answer to question, would a disabled ‘grown-up’ be able to have a girlfriend/boyfriend, perhaps get married, he stated? “No, because you have to have two hands, because you have to put the arms around the body of one people.” Child Year 2.

Disabled people &relationships In answer to questioning about whether disabled people (grown-ups) can have girlfriends/boyfriends, perhaps get married? “Child 1: Most of them can’t. Child 2: Because they’re in a wheelchair. Child 3: And people probably think that they’re ugly.” Child Year 6. Same question, different response: “It’s like the same with dwarves miss. They get married to normal people but sometimes the normal people just don’t want to. They say ‘I don’t want to know you because you’re weird and I don’t want you to be my friend.’” Child Year 6. Year 6: focused more upon the issue of ‘attractiveness’ – interesting given their age group and their own emerging sexuality?

Disabled people & parenting Having children ‘I think it would be really hard (for a disabled person – ed.) to have a child because it might be hard to lie down in the bed where you have your baby pulled out’. (Child mimes the idea that wheelchair users are rather like Lego-people and are permanently shaped in the sitting position). Year 2. Again, at year 2, a focus on ‘practicalities’ and disabled people being ‘unable’ to do things… Excerpt from a focus group with year 6 children – this group were concerned with congenital impairments: Angharad: Do you think that disabled people can sometimes have a baby? Child 1: Yeah, but it would keep going disabled all the way down thing. Child 2: Yeah, they would be able but they could be disabled. However, where a child had a family member who is disabled, they answered ‘of course’ to this question: “My Uncle has got 3 kids”

Disabled people and work Can disabled people have jobs? At year 6, children more likely to say ‘yes’ immediately or ‘some can’ and then discuss ‘practicalities’…but also to be more aware that employers might discriminate against disabled people. “If they’re blind then they won’t be able to get a job because, say if they work in a factory, and they turn blind, if…they got trapped in a machine, their arm might be cut off or they might die” Year 6. Child who had witnessed someone (with a learning difficulty, perhaps?) being trained to work within a shop: “Well, I saw one (disabled person – ed.)…and he was on the tills and this person was showing him what to do and everything – so he could see, and I think that he could like. I think he know how to work it, it was just a matter of learning it. So some of them can do stuff. But it’s hard for them. Once they’ve learned it then they’re just like a normal person.” Year 6. At year 2 children more likely to answer ‘no’, at least initially & then ‘yes’! They were rather unsure. In one school they said that disabled people could possibly be ‘dustbin men’, ‘postmen’ or perhaps ‘millionaires’ (!) In another, a year 2 child said: ‘No (they can’t work). They have to go in the house and just sit down. And they can watch TV.’ But one child did also say: ‘If someone had a wheelchair, right, they could work in an office and type on the computer’. “No because the bosses only like people who can do everything. They don’t like people who have something wrong with them.” Year 6.

Fear…? • There was some suggestion from both year groups that non-disabled children find the idea of disability (or more accurately, ‘impairment’) and the appearance of ‘different bodies’ frightening…and sometimes this strays into mild aversion e.g. when talking about a prosthetic limb several children said that they wouldn’t want to touch it in case ‘it came off’ (this was clearly a horrifying thought, although they were also worried that they might break it or hurt the person) Excerpt from a focus group with year 6 children: Child 1: They sometimes look different. Angharad: In what way? Child 1: Because sometimes they have like dis-shapen arms or they’re a bit skinny like…and all that kind of stuff. Child 2: Because their feet go lop-sided when they’re walking they wobble. Child 3: (Appalled tone) They usually have stuff down their front because they can’t eat proper. The following is an excerpt from a focus group discussion with year 2 children: Child 1: (Appalled/horrified tone) At Manchester, in town, I saw someone in a wheelchair with no legs. Angharad: Did you? Child 2: (Even more appalled/horrified tone) I didn’t wish to hear that!

Contemporary ‘freakshow’ TV But it was also evident that some children are watching horror movies and thinking that they are real and perceiving certain images as portrayals of disabled people (whether or not this was the intention of the film makers): Child Year 6: I watched this programme and this woman gave birth to a baby and it was a devil. Angharad: Was this real, or was this a story? Child: No, it were real. Head-teacher later stated that this child watches 18 rated movies with an older sibling & that they regularly have to deal with his distress • Outside of school, the ‘family’ did not appear to be a major source of information. The most frequently referenced ‘source’ was television and, in particular, the ‘body shock’ type documentaries, as previously mentioned • The ‘fear and aversion’ theme was most apparent during discussions of these documentaries, which children obviously found distressing. Although there was also a sense in which some children perhaps rather ‘enjoyed’ being ‘terrified’.

Celebrity disabled people Interesting discussions took place, particularly amongst year 6 children about various famous people who are/were disabled. In all cases, children had learnt about these individuals within school. It is rather difficult to draw conclusions about this issue because there were more and less positive aspects to these discussions. Less positive was the fact that although children clearly admired these ‘exceptional individuals’, there was a sense in which this was not resulting in a change in their general attitude towards disabled people. Nevertheless, there were clearly some positive outcomes of this type of teaching and our ‘reservations’ are not major. Excerpt from focus group with year 6 children: Child 1 (re. President Roosevelt): his desk, he had this thingy so you could never even see his wheelchair. Angharad: why do you think he didn’t want people to know that he used a wheelchair? Child 1: Because everybody would think he was different and they might not want him as president. (…) Child 2: If people like, don’t want him to be president and they don’t vote for him because he’s disabled – like first they were going to vote for him then they never because he’s disabled – then that’s just stupid because they should all get a fair chance. +ve Children clearly admired people like Helen Keller, Stephen Hawking and Franklin Roosevelt. They were particularly ‘struck’ by President Roosevelt’s story.

And finally… Children spoke about how ‘we’ (non-disabled people) should treat disabled people. Most children thought that ‘being kind’ was important, but further comments included: I don’t like it when people treat disabled people unfairly, because I think there should be a law about treating them unfairly. School C Year 6. Disabled people are still human beings. I don’t think people should treat them different just because they’ve got a little problem with them. School D Year 6. We learned that, even if you don’t like somebody on the outside, if they are disabled, if you got to know them you might find that they are really nice on the inside…that was one of our main things in our last lesson. School C Year 6.

Conclusions… No. 1: Non-disabled children, even as young as 6/7 years old, are clearly ready to discuss the issue of disability – indeed, they are already thinking about disability issues and respond positively to new information. Isn’t it time that we gave them the opportunity to critically engage with the issue of disability? • Other conclusions: • Non-disabled children need more information to help tackle some of their misunderstandings - some of which although innocently/naively articulated (on the whole) are nevertheless potentially disabling and find their echoes in the disabling attitudes that we know are expressed by many adults. We also need to work to overcome the tendency towards ‘othering’ in the attitudes of non-disabled children. • We suggest that non-disabled children need to experience meeting disabled people & to hear about the realities of their lives. Children who had had direct experience of interacting with disabled people in their families or local community had a more accurate and realistic understanding of the lives of disabled people.

Conclusions… • Teachers and parents need to be aware of the impact of TV and film on children’s attitudes towards disability. Additionally, this issue warrants further investigation by researchers in order to understand the manner in which children ‘engage’ with media representations of impairment/disability. • TV and film makers need to be aware of who may be watching their products, despite ‘watersheds’ and to continue to think about how they present impairment/disability. ‘Freak Show’ TV is, we suggest, problematic.

And finally… • Educators and other individuals who wish to promote positive attitudes towards disabled people have a good starting point – the innate sense of justice and fairness that many non-disabled children possess and that has already been encouraged/fostered by many schools. • This would be a good place to begin discussions about disability equality – indeed, it is to such concepts that children appear to turn when discussing disability, given some encouragement.

Findings and Initial Conclusions