'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

1. ‘Changing Hearts and Minds’ –
Is it possible and how
might it be achieved ?
Paddy Ladd, Steve Emery,
Sarah Hirons

2. 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 ?

3. 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.

4. 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.

5. 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.

6. Identifying Students
We aimed to select groups from several different disciplines, to
see 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 discussion
was an important part of the study.

7. 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 about
Deaf communities.
But it was also necessary for her to pretend to be ignorant of such matters – this
would prevent her getting drawn into the discussions by having to answer
numerous questions about Deaf communities.
This was very challenging work !

8. Key Questions
We repeated two questions from Stage 1 in Stage 3, so that we
had ‘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 question
only.

9. Selecting Positive Deaf Community
Information.
This is a very challenging task ! It would be
interesting to later hear your views on what
positive information you would select !
And it is one thing to select information – it is
quite another challenge to find ways to present
that to people !

10. Types of Examples Chosen
We 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.

11. 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.

12. 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.

13. 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.

15. Sign Poetry
This was difficult because we wanted to select

Dot Miles, but the ‘right’ poems were not on the
internet. So we selected a John Wilson poem,
because it had a voice-over and was from a TV
show (prestige element).

17. 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.

19. 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.

21. 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.

23. 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

24. 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 didn't
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 didn't understand the point, some thought it
was creative, lots didn't like it because they don't like rap music

25. Results.
UK students 22
Non-UK students 5
Total number of students 27
We decided to leave the education students out of the study, as there were only
2 of them, and neither completed the Stage 3 forms.
This left :
- Humanities 4
- Law 9
- Medicine 8
- ‘Social Sciences’ 6

26. Measuring Changes
The question again - “ Genes causing deafness from birth should be
selected for removal.”
We used a 5 point scale – Strongly Agree > Agree > Unsure >
Disagree>Strongly Disagree
We 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 ‘Positive
Change’.
When move towards agreement, ‘Negative Change’.

27. 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 0
TOTALS 12 3 8 4
We can see from these left hand column figures clear evidence of a shift towards positive
opinions.

28. 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 0
TOTALS 11 1 6 1
The UK figures indicate a stronger shift towards positive opinions.

29. What Types of Opinion Shifts ?
(a) Positive Shifts
Unsure to Disagree 7
Agree to Unsure 3
These 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 1
These represent a change, but only of degree - not a key change.

30. (b) Negative Shifts
 Unsure to Strongly Agree 3
Every other shift along the scale took just the one ‘step’. These moved 2
steps.
We should note that 2 of these were non-UK students, and we are currently
investigating whether there is any significance in this.

31. (c) Types of ‘No Change’
Unsure 4
Disagree 1
Strongly Disagree 1
Strongly Agree 2
What 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.

32. 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.

33. Laypeople’s discussions

34. 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

35. 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…)

36. 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….

37. 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’?

38. Part A: Common Themes

39. 1. Knowledge about the clause and Deaf
issues
The 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.

40. Quotes and exchanges from Focus
Group N (medical students)

41. 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 you
could 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 the
choice…
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 could
have 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 feel
comfortable making the decision to abort a baby because they
were Deaf.

42.  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.

43. 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?’


44. 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.

45. During many of the discussions, laypeople were openly stating that the deaf
gene should be eradicated…even though they recognised the value of the
clips…
I think its just that so far the Deaf Community has managed to be
part of the bigger society, they’ve come up with a sign language
of their own which they can communicate with other people
There are jobs where people are translators for them and they
seem perfectly able to synchronise in society but looking at the
clips it also does show that they try on things such as creating
music and enjoying poetry and I just feel that yeah as much as
you could try, if there’s an easier way then why not…yeah get rid
of it? (S, Group B)
And the next person replied…

46. I think the culture of Deaf people it’s awesome, the sort of culture
they have is incredible [but] I don’t think that…overcomes the
argument that it is…still a disability and until its not, it should
probably be screened [out] if it can be (SM, Group B)
However….
…SM stayed quiet after a dialogue in which the above view was challenged. Later
on SM said…

47. I’ve changed my mind about screening. I don’t think we should
be screening for deafness…(All laugh)…or blindness…it’s
better to chance it…just see what happens.
(SM Group B)
Here is direct evidence that people’s hearts and minds can and do change.

48. And there were other statements made that expressed concern about what the
developments could mean in future:
It makes me think of the Holocaust, if the government can
choose what characteristics or what conditions, I mean if
someone is a valid human being or not, or should be
born or not, like, what if they decide that all deaf people
shouldn’t be allowed to live at all?
(R, Group B)

49. 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)

50. 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

51. Where do you draw the line? Slippery Slope
Testing for
Deafness Disability Holocaust fears
severe illnesses
downs/autism, blindness
mental illness
criminology
‘Designer babies’
Most of the answers were hypothetical – they were very personal questions:

52. 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)

53. 4. Parental right to choose
There was virtually unanimous agreement that parents should have the
right to choose:
I think it should always be the, on the legal point of view, it should be the
parents’ decision because it, because saying that you can choose not to
have a Deaf child and you can’t choose to have a Deaf child means that
you presuppose that Deaf is something not to have and it’s all you can do.
You can do that. (S, Group M)

54. One final point:
Better off not being born?
Many laypeople asked: ‘what if the deaf person sues their parents in
later life for them being selected/created knowing they would be
born deaf’?
They are, in effect suing their parents for having been born in the
first place: but this is not as farfetched at it seems (example of
Downs Syndrome)

55. Part B: Common areas of
discussion that arose but were not
a result of a question asked

56. 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.

57.  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)

58. 6. Are Deaf people
‘economically viable’?
This was such an important part of the discussion
that we will explore it in some depth here

59. Some context is crucial
Current 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

60. 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

61. Group N discussion
Speaker 1: Why is it legislated that way? [referring to
HFEA 2008]
Speaker 2: Effective use of resources or something?
Speaker 1: Is it a drain on government money? Is that
what they see?....
[Later…different speaker:] I can see why legislation
would be in place because financially, like, it is
expensive to support people’

62. Group M discussion
Speaker 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 life
and saying about the costly thing again, I might not be able to afford
it kind of things and then that’ll impact on the child’s life again…

63. 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.

64. 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.

65. We now bring in Sarah for her
personal reflections on running
the group interviews

66. 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

67. 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

68. 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

69. 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.

70. 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.

71. Thank you!
 We now welcome your questions!