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Changing hearts and minds paddy ladd steve emery_sarah hirons
 

Changing hearts and minds paddy ladd steve emery_sarah hirons

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'Changing Hearts and Minds' presentation given by Paddy Ladd, Steve Emery and Sarah Hirons at the 'Sleepwalking Into Eugenics' conference at MShed, Bristol, 10th November 2012

'Changing Hearts and Minds' presentation given by Paddy Ladd, Steve Emery and Sarah Hirons at the 'Sleepwalking Into Eugenics' conference at MShed, Bristol, 10th November 2012

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    Changing hearts and minds paddy ladd steve emery_sarah hirons Changing hearts and minds paddy ladd steve emery_sarah hirons Presentation Transcript

    • ‘Changing Hearts and Minds’ – Is it possible and how might it be achieved ? Paddy Ladd, Steve Emery, Sarah Hirons
    • Introduction Many members of Deaf communities have long held the belief that if the positive reality of their lives and communities could be presented to hearing people, they might in turn develop positive attitudes. Such beliefs lie behind teaching BSL, Deaf culture, Deaf Studies etc. So how might we apply this to the genetics issue ?
    • Researching Hearing People’s Beliefs and Attitudes We decided to see whether presenting positive information about Deaf communities could change attitudes. But of course, we all know that changing attitudes requires much time and much information. Nevertheless, someone has to start somewhere in measuring attitude change ! So we decided to conduct a small scale experiment. To present a limited amount of information to a specific group of hearing people.
    • Researching Hearing People’s Attitudes to Genetic Issues Generally. We also decided to try and identify the range of issues that hearing people would bring up when discussing genetic issues relating to Deaf and Disabled people. Steve will talk about these findings in more depth after me.
    • Research Methods - Sampling We decided to focus on a specific section of the population – students. This was because : Ease of access to a specific group in UK society. Students will often become important players in their future working lives. Musgrove (1974) study of different attitudes across student ‘disciplines’ was a useful model.
    • Identifying StudentsWe aimed to select groups from several different disciplines, tosee if there were any significant differences between them.We hoped to get groups from : - Arts/Humanities. - Education. - Medicine. - ‘Social Sciences’. - Law.We aimed for around 8 – 10 from each, because group discussionwas an important part of the study.
    • Methodology Structure We aimed to develop a ‘package’ of information that students could access. They would then undergo a 3 stage process : 1. Filling in an initial questionnaire. 2. Attending group discussion. 3. Filling in a short questionnaire afterwards.It was vital to have a hearing interviewer for Stage 2, one who knew a lot aboutDeaf communities.But it was also necessary for her to pretend to be ignorant of such matters – thiswould prevent her getting drawn into the discussions by having to answernumerous questions about Deaf communities.This was very challenging work !
    • Key QuestionsWe repeated two questions from Stage 1 in Stage 3, so that wehad ‘Before’ and ‘After’ information about : - ‘Are there specific genetic conditions you feel it would be appropriate to remove ?’ - “ Genes causing deafness from birth should be selected for removal.”The results we give later are focused on the second questiononly.
    • Selecting Positive Deaf Community Information.This is a very challenging task ! It would beinteresting to later hear your views on whatpositive information you would select !And it is one thing to select information – it isquite another challenge to find ways to presentthat to people !
    • Types of Examples ChosenWe knew that we needed positive exampleswhich could ‘make a point’ quickly.After much thought we decided on :Deaf Arts – ie. Theatre, Poetry, Comedy,Signed Song.
    • Reasons for Choosing Where possible we decided to use examples of Deaf people who had become known to the ‘hearing world’ through their work. There were 2 of these – Theatre and Signed Song. For the other 2 examples, we had to take a different approach. We also decided to show film of a famous hearing person who had supported the Deaf community. The reason for taking this approach was that we wanted to convey that Deaf people had obtained prestige outside their own world, and could be said to have been making a contribution to society.
    • How to Ensure Access to Materials Because the materials had to be visual, we faced a challenge in collecting this together for easy access. We decided to use film that could be located on the Internet, mainly from YouTube. Students would then write down their comments about each set of film clips and bring those to group discussions.
    • Deaf Theatre Deaf Theatre – the most obvious choice was Marlee Matlin, because we could show film of her receiving her Oscar, as well as examples of her work.
    • Sign PoetryThis was difficult because we wanted to selectDot Miles, but the ‘right’ poems were not on theinternet. So we selected a John Wilson poem,because it had a voice-over and was from a TVshow (prestige element).
    • Signed Song We did not want ‘hearing songs’, but songs with a Deaf theme written and performed by Deaf persons. We selected SignMark because he achieved national recognition for his work (Eurovision Song Contest), and because the films were professionally shot.
    • Comedy This was very challenging indeed, because most Deaf comedy does not make non-signing hearing people laugh, of course ! So we went for a piece of satire – one which showed Deaf people teasing hearing people. This was fairly ‘risky’ because hearing people might take offence. But we felt that it was the best option available.
    • Princess Diana We selected her because we wanted to show that prestigious hearing people did come out in support of Deaf community aims – For example, her endorsement of the BSL Dictionary And her willingness to learn to sign.
    • But of course – expect the unexpected ! The comments the students wrote down on each film clip, and the discussions which then followed, revealed some very important information about whether these were the right subjects, right film clips etc. Sarah will now say something about the selection of material that we chose to show laypeople
    • Reactions to the material• Signed poetry - none of them were aware of sign language poetry, nearly all thought it was very creative and expressive. This really challenged their negative assumptions about sign language• Marlee Matlin - very positive reactions: impressed with prestige (of Oscar and West Wing), thought fingerspelling was amazing, impressed with Matlin as a person (strong, confident)• Deaf comedy - mixed: some thought it was funny, some didnt understand it, some felt guilty about the way hearing people treat Deaf people• Diana - positive reactions: thought she was a good role model• Signmark - mixed: lots didnt understand the point, some thought it was creative, lots didnt like it because they dont like rap music
    • Results.UK students 22Non-UK students 5Total number of students 27We decided to leave the education students out of the study, as there were only2 of them, and neither completed the Stage 3 forms.This left : - Humanities 4 - Law 9 - Medicine 8 - ‘Social Sciences’ 6
    • Measuring ChangesThe question again - “ Genes causing deafness from birth should beselected for removal.”We used a 5 point scale – Strongly Agree > Agree > Unsure >Disagree>Strongly DisagreeWe then examined the differences on the scale between Stage 1 (before)and Stage 3 (after).When the views move towards disagreement, we refer to that as ‘PositiveChange’.When move towards agreement, ‘Negative Change’.
    • Overall Totals ‘Discipline’ Positive Change Negative Change No Change No ReplyHumanities 2 0 2 0Law 4 2 1 3Medicine 3 0 4 1‘Social Sciences’ 3 1 1 0TOTALS 12 3 8 4We can see from these left hand column figures clear evidence of a shift towards positiveopinions.
    • Overall Totals for UK Students.‘Discipline’ Positive Change Negative Change No Change No ReplyHumanities 2 0 2 0Law 4 0 0 0Medicine 3 0 4 1‘Social Science’ 2 1 0 0TOTALS 11 1 6 1The UK figures indicate a stronger shift towards positive opinions.
    • What Types of Opinion Shifts ? (a) Positive ShiftsUnsure to Disagree 7Agree to Unsure 3These can be seen as key changes – ie. there is movement from one ‘set’ of opinions to anotherDisagree to Strong Disagree 1Strong Agree to Agree 1These represent a change, but only of degree - not a key change.
    • (b) Negative Shifts Unsure to Strongly Agree 3Every other shift along the scale took just the one ‘step’. These moved 2steps.We should note that 2 of these were non-UK students, and we are currentlyinvestigating whether there is any significance in this.
    • (c) Types of ‘No Change’Unsure 4Disagree 1Strongly Disagree 1Strongly Agree 2What can we tentatively conclude from these figures ?• 2 who held positive views maintained them.• 2 who held strong negative views maintained them.• 4 who remained unsure gave additional information which we will be examining further.
    • Other Factors to be Considered To what extent could the material itself be ‘improved upon’ in respect of removing ‘red herrings’ ? The figures do not allow any valid claim to be made about differences between different groups of students – they are broadly consistent. The slightly larger number of ‘No Change’ in medical students is cancelled out by the number who already have a positive attitude. We will now open for your questions and comments.
    • Laypeople’s discussions
    • Background to the discussion: a recapPaddy gave an outline of the background to laypeople’s discussionsLaypeople were shown several clips of Deaf cultural expressionFollowing that discussion, people were asked questions about the clause itself
    • The Questions that we asked Have the clips changed your views in any way? Detailed background was given about the clause and genetic developments and laypeople were asked their opinions. If you had the option of having a test would you take and want to know the result? (more questions will follow later…)
    • Thematic content It is critical to state: we chose to employ a hearing person (Sarah Hirons) to run the discussions in the form of focus groups; she has been involved in the consequent discussions. The purpose of running focus groups: if you run several groups asking the same or similar questions, themes emerge across the groups…the information gathered can then be considered valid and reliable. These group meetings were tape-recorded and transcribed. Our analysis is therefore based on the transcription : later at the end of this presentation, Sarah will be giving a first hand account of her impressions of the group meetings. What follows is the thematic content of the discussions – they can be broadly broken down into a number of ‘themes’, as follows….
    • Analysing the discourse This section is in two parts: Part A: Common Themes:  1 Knowledge about: s.14(4)(9) and Deaf issues  2 Choosing genes: disability and deafness  3 Would you have the deaf gene?  4 Parental right to choose Part B: Unexpected ‘surprises’  5 State Intervention and consultation  6 Are Deaf people ‘economically viable’?
    • Part A: Common Themes
    • 1. Knowledge about the clause and Deaf issuesThe understanding of the technical issues varied – some of thosewho took part understood issues relating to IVF, for example:  ‘it’s just an embryo at that stage’  ‘[even without PGD] you are choosing one or two and discarding the others, so embryos are being rejected anyway’  ‘embryos often spontaneously terminate after less than three months’ But the majority could not grasp a fundamental fact: embryo’s would not be ‘created’ they would be ‘selected’.It was quite shocking that many laypeople got this (and other) information incorrect : remember some of these people are training to be medical doctors and lawyers.
    • Quotes and exchanges from Focus Group N (medical students)
    • Speaker: …I don’t know if this is a really bad thing to admit, but Ikind of intuitively thought like agree to the question about if youcould remove the gene…Speaker: …It might just be really ignorant view for me to thinkthat, that they’d want to hear. I don’t know, if they had thechoice…Speaker:… Not saying that being Deaf is bad or anything, but likeI’m not sure if I‘d feel too guilty in myself knowing that I couldhave changed their future…Speaker: … I would feel less guilty if I was like, picking out like adisease out of a certain amount of embryos…but I wouldn’t feelcomfortable making the decision to abort a baby because theywere Deaf.
    •  Moderator: …At the moment we’re talking about if you’ve got your little petri dish full of four embryos and you’re given the option…there’s a very cheap test we can do that will test for deafness, would you like to test for deafness… Next Speaker:… Oh I see… Moderator:…So then it’s a case of knowing that one is Deaf and five others are not and just choosing… Same speaker:…Oh I see. Yeah ‘cause. Moderator:..Or just knowing… Same speaker:…or just knowing yeah.(after the moderator explained there was discussion over selection…later… New speaker: Yeah, ‘cause you’re going to choose one anyway, you can’t have all 5. Well, it depends if you are allowed all 5 or not. Moderator: I think your maximum of 2 generally, in IVF.
    • 2. Choosing Genes: disability and deafness; questions asked:‘Would you screen for the deaf gene?’‘Would you screen for a disability gene?’‘What other things might you screen for?’
    • Choosing genes: disability and deafness For many laypeople, their attitude towards screening could best be described as ‘cavalier’. Often the discussion would lead to a long list of ‘conditions’ that they believe should be screened out…which along with deafness included:  Severe illness  Down’s Syndrome  Autism  Learning Disability  Mental health distress  Criminology The occasional comment was made that having a deaf baby was ok: e.g. if it was a choice between a ‘healthy’ deaf baby and an ‘unhealthy’ baby, keep the deaf baby.
    • During many of the discussions, laypeople were openly stating that the deafgene should be eradicated…even though they recognised the value of theclips…I think its just that so far the Deaf Community has managed to bepart of the bigger society, they’ve come up with a sign languageof their own which they can communicate with other peopleThere are jobs where people are translators for them and theyseem perfectly able to synchronise in society but looking at theclips it also does show that they try on things such as creatingmusic and enjoying poetry and I just feel that yeah as much asyou could try, if there’s an easier way then why not…yeah get ridof it? (S, Group B)And the next person replied…
    • I think the culture of Deaf people it’s awesome, the sort of culturethey have is incredible [but] I don’t think that…overcomes theargument that it is…still a disability and until its not, it shouldprobably be screened [out] if it can be (SM, Group B)However….…SM stayed quiet after a dialogue in which the above view was challenged. Lateron SM said…
    • I’ve changed my mind about screening. I don’t think we shouldbe screening for deafness…(All laugh)…or blindness…it’sbetter to chance it…just see what happens. (SM Group B)Here is direct evidence that people’s hearts and minds can and do change.
    • And there were other statements made that expressed concern about what thedevelopments could mean in future:It makes me think of the Holocaust, if the government canchoose what characteristics or what conditions, I mean ifsomeone is a valid human being or not, or should beborn or not, like, what if they decide that all deaf peopleshouldn’t be allowed to live at all? (R, Group B)
    • 3. So, would you accept the deaf gene?There were many ambiguities; e.g. a person said the following:I don’t want my baby you know, to be born like, to be deaf. Just like hear without any disadvantage (L, Group E)But also said:I do agree…that cause like when a person desperate to have a baby…offer the chance to have one you know even with deafness (L, Group E)
    • When directly put on the spot… Of those from six groups who replied to the question whether they would want to screen out a deaf embryo... 10 said ‘no’ 3 said ‘yes’ 1 said ‘don’t know’ Most did not necessarily want the test to discard the deaf embryo, but just to know so as to prepare. For disability genes it often depended on what the ‘disability’ was: the consensus was to reject the embryo with the disabling condition… especially for extreme conditions such as a baby having a short and painful life
    • Where do you draw the line? Slippery SlopeTesting forDeafness Disability Holocaust fears severe illnesses downs/autism, blindness mental illness criminology ‘Designer babies’Most of the answers were hypothetical – they were very personal questions:
    • Yeah it’s so hard obviously it’s such a personal thing and such a…I think it’s something you have to decide like in the moment rather than, it’s difficult to imagine that would feel like (R, Group E)
    • 4. Parental right to chooseThere was virtually unanimous agreement that parents should have theright to choose:I think it should always be the, on the legal point of view, it should be theparents’ decision because it, because saying that you can choose not tohave a Deaf child and you can’t choose to have a Deaf child means thatyou presuppose that Deaf is something not to have and it’s all you can do.You can do that. (S, Group M)
    • One final point: Better off not being born?Many laypeople asked: ‘what if the deaf person sues their parents inlater life for them being selected/created knowing they would beborn deaf’?They are, in effect suing their parents for having been born in thefirst place: but this is not as farfetched at it seems (example ofDowns Syndrome)
    • Part B: Common areas ofdiscussion that arose but were not a result of a question asked
    • 5. Should deaf people have been consulted: should the state intervene? There was a universal, genuine astonishment across most groups that Deaf people had not been consulted on the clause, even amongst those who believed deafness should be screened out…this was a very common refrain: Speaker: I’d like to think that they involved Deaf people in this decision making process…[murmurs of agreement] Same Speaker: I think it would be quite wrong if they had just decided on behalf of Deaf people for that…I’d like to think that they did it with Deaf people… Moderator: If you were told that they didn’t consult how would that make you feel? Same Speaker: I’d think that was quite wrong…I wouldn’t agree with that. I don’t think you can make a decision for someone else when you have no experience yourself.
    •  There were a number of suggestions put forward as to how a decision could be made to decide what should and should not be screened for…  Scientists and the Government, who should draw up a ‘sliding scale’ of the ‘quality of life’ of a genetic illnesses – e.g. ‘deafness would be at 5%; some awful…disease that kills you in the first year would be…80% (S, Group O)  Parents decision (S, Group M), Governments decision (E, Group M)  Medical practitioners in a forum, based on ‘quality of life’ (SM, Group L)  Those who have the condition, (Group L)
    • 6. Are Deaf people ‘economically viable’?This was such an important part of the discussion that we will explore it in some depth here
    • Some context is crucialCurrent climate: austerity measuresGovernment is making cuts to try to save money;started in 2008, ongoing.It is not a UK issue only, but a global oneGenetic scientists commonly make references to thecost of caring for deaf people
    • Therefore, whether allowing the elimination of the deaf and disabled genes would make savings was a common themeA reminder: those involved in the discussions are our future:doctors, lawyers, philosophers, artists
    • Group N discussionSpeaker 1: Why is it legislated that way? [referring toHFEA 2008]Speaker 2: Effective use of resources or something?Speaker 1: Is it a drain on government money? Is thatwhat they see?....[Later…different speaker:] I can see why legislationwould be in place because financially, like, it isexpensive to support people’
    • Group M discussionSpeaker S: …It could be really, it’s always very costly to havechildren with a disability because the world isn’t adapted…Speaker E:…I’d want my child to have kind of the best possible lifeand saying about the costly thing again, I might not be able to affordit kind of things and then that’ll impact on the child’s life again…
    • Quotes It would be quite expensive to be deaf I can imagine…it could be a financial burden on society because of the creation of like a whole other layer of facilities that need to be provided for the impairment so it could be seen as saving time and resources.
    • But these views did not go unchallenged… I think you have to remember though that like all of these clips that we’ve just watched and we’ve said how interesting they are and how much of a culture they have…and value that they can add to society, I think with things that hearing people wouldn’t think of or recognise or invent and I think that with every disability they can bring something to the fully-abled community and there’s value in that and we shouldn’t destroy it.
    • We now bring in Sarah for herpersonal reflections on running the group interviews
    • Conducting the discussion groups• Hearing, background in Law and Deaf Studies• Presenting myself as neutral key to encouraging open discussion of sensitive info• Very challenging experience, often upsetting!• Meant I did not challenge people in ways I normally would – interesting as discussion led them to attitude shift rather than by being educated/preached at
    • Good surprise - medics• Balanced, considered views• Deafness not seen as disability by many of them• Great caution about who has power to make these decisions - they wanted involvement of people who are Deaf themselves, not just medics and politicians
    • Bad surprise - eugenic views• Personally shocked at eugenicist views put forward as matter of fact by well-educated ‘liberal’ people• When I made link between what they were saying and Nazi history, most (not all!) people quick to distance themselves from those views• Context of recession was key - becomes acceptable to make these money-based statements
    • Summary/Conclusion 1 From the focus groups there are mixed results Some glaring ambiguities : it indicates people are inconsistent in their views Great concern at the lack of knowledge from people who are our future doctors and lawyers Some shocking discussions over the extent to which people would screen out and do so to save costs In this respect, the discourse confirms what we saw in Gregor’s figures in the morning: i.e. attitudes of genetic scientists and counsellors.
    • Summary/Conclusion 2 But… As we saw from Paddy’s statistics, there were some shifts in people’s attitudes We could attribute those changes partly due to showing positive representations of deaf people We are confident that could well work with people’s attitudes to disabled people too : i.e. if they are encouraged to discuss genetic issues with a positive framing of disabled people We found that when people were challenged by others in the group they would at least reflect on their views, and there was a direct changing of minds in some cases.
    • Thank you! We now welcome your questions!