‘‘Changing Hearts and Minds’ – Changing Hearts and Minds’ – Is it possible and how Is it possible and how

might it be achieved ?might it be achieved ?

Paddy Ladd, Steve Emery, Paddy Ladd, Steve Emery,

Sarah HironsSarah Hirons

Introduction

Many members of Deaf communities have long Many members of Deaf communities have long held the belief that if the positive reality of held the belief that if the positive reality of their lives and communities could be presented their lives and communities could be presented to hearing people, they might in turn develop to hearing people, they might in turn develop positive attitudes.positive attitudes.

Such beliefs lie behind teaching BSL, Deaf Such beliefs lie behind teaching BSL, Deaf culture, Deaf Studies etc.culture, Deaf Studies etc.

So how might we apply this to the genetics So how might we apply this to the genetics issue ?issue ?

Researching Hearing People’s Beliefs and Attitudes

We decided to see whether presenting positive We decided to see whether presenting positive information about Deaf communities could change information about Deaf communities could change attitudes.attitudes.

But of course, we all know that changing attitudes But of course, we all know that changing attitudes requires much time and much information.requires much time and much information.

Nevertheless, someone has to start somewhere in Nevertheless, someone has to start somewhere in measuring attitude change !measuring attitude change !

So we decided to conduct a small scale experiment.So we decided to conduct a small scale experiment. To present a limited amount of information to a To present a limited amount of information to a

specific group of hearing people.specific group of hearing people.

Researching Hearing People’s Researching Hearing People’s Attitudes to Genetic Issues Attitudes to Genetic Issues

Generally.Generally.

We also decided to try and identify the range of We also decided to try and identify the range of issues that hearing people would bring up when issues that hearing people would bring up when discussing genetic issues relating to Deaf and discussing genetic issues relating to Deaf and Disabled people.Disabled people.

Steve will talk about these findings in more Steve will talk about these findings in more depth after me.depth after me.

Research Methods - Sampling

We decided to focus on a specific section of the We decided to focus on a specific section of the population – students. This was because :population – students. This was because :

Ease of access to a specific group in UK Ease of access to a specific group in UK society.society.

Students will often become important players Students will often become important players in their future working lives.in their future working lives.

Musgrove (1974) study of different attitudes Musgrove (1974) study of different attitudes across student ‘disciplines’ was a useful model. across student ‘disciplines’ was a useful model.

Identifying StudentsWe aimed to select groups from several different disciplines, to We aimed to select groups from several different disciplines, to see if there were any significant differences between them.see if there were any significant differences between them.

We hoped to get groups from :We hoped to get groups from : - Arts/Humanities.- Arts/Humanities. - Education.- Education. - Medicine.- Medicine. - ‘Social Sciences’.- ‘Social Sciences’. - Law.- Law.

We aimed for around 8 – 10 from each, because group discussion We aimed for around 8 – 10 from each, because group discussion was an important part of the study. was an important part of the study.

Methodology StructureWe aimed to develop a ‘package’ of information that students could access.We aimed to develop a ‘package’ of information that students could access.

They would then undergo a 3 stage process :They would then undergo a 3 stage process : 1. Filling in an initial questionnaire.1. Filling in an initial questionnaire. 2. Attending group discussion.2. Attending group discussion. 3. Filling in a short questionnaire afterwards.3. Filling in a short questionnaire afterwards.

It was vital to have a hearing interviewer for Stage 2, one who knew a lot about It was vital to have a hearing interviewer for Stage 2, one who knew a lot about Deaf communities.Deaf communities.But it was also necessary for her to pretend to be ignorant of such matters – this 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 would prevent her getting drawn into the discussions by having to answer numerous questions about Deaf communities.numerous questions about Deaf communities.

This was very challenging work ! This was very challenging work !

Key Questions

We repeated two questions from Stage 1 in Stage 3, so that we We repeated two questions from Stage 1 in Stage 3, so that we had ‘Before’ and ‘After’ information about :had ‘Before’ and ‘After’ information about :

- ‘Are there specific genetic conditions you feel it would be - ‘Are there specific genetic conditions you feel it would be appropriate to remove ?’appropriate to remove ?’

- “ Genes causing deafness from birth should be selected for - “ Genes causing deafness from birth should be selected for removal.”removal.”

The results we give later are focused The results we give later are focused on the second question only.

Selecting Positive Deaf Community Information.

This is a very challenging task ! It would be This is a very challenging task ! It would be interesting to later hear your views on what interesting to later hear your views on what positive information you would select !positive information you would select !

And it is one thing to select information – it is And it is one thing to select information – it is quite another challenge to find ways to present quite another challenge to find ways to present that to people !that to people !

Types of Examples Chosen

We knew that we needed positive examples We knew that we needed positive examples which could ‘make a point’ quickly.which could ‘make a point’ quickly.

After much thought we decided on :After much thought we decided on :

Deaf Arts – ie. Theatre, Poetry, Comedy, Deaf Arts – ie. Theatre, Poetry, Comedy, Signed Song.Signed Song.

Reasons for ChoosingReasons for Choosing Where possible we decided to use examples of Deaf Where possible we decided to use examples of Deaf

people who had become known to the ‘hearing world’ people who had become known to the ‘hearing world’ through their work. There were 2 of these – Theatre through their work. There were 2 of these – Theatre and Signed Song.and Signed Song.

For the other 2 examples, we had to take a different For the other 2 examples, we had to take a different approach.approach.

We also decided to show film of a famous hearing We also decided to show film of a famous hearing person who had supported the Deaf community.person who had supported the Deaf community.

The reason for taking this approach was that we The reason for taking this approach was that we wanted to convey that Deaf people had obtained wanted to convey that Deaf people had obtained prestige outside their own world, and could be said to prestige outside their own world, and could be said to have been making a contribution to society.have been making a contribution to society.

How to Ensure Access to Materials

Because the materials had to be visual, we Because the materials had to be visual, we faced a challenge in collecting this together for faced a challenge in collecting this together for easy access.easy access.

We decided to use film that could be located on We decided to use film that could be located on the Internet, mainly from YouTube.the Internet, mainly from YouTube.

Students would then write down their Students would then write down their comments about each set of film clips and comments about each set of film clips and bring those to group discussions.bring those to group discussions.

Deaf Theatre

Deaf Theatre – the most obvious choice was Deaf Theatre – the most obvious choice was Marlee Matlin, because we could show film of Marlee Matlin, because we could show film of her receiving her Oscar, as well as examples of her receiving her Oscar, as well as examples of her work.her work.

Sign PoetrySign Poetry

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

Signed SongSigned Song

We did not want ‘hearing songs’, but songs We did not want ‘hearing songs’, but songs with a Deaf theme written and performed by with a Deaf theme written and performed by Deaf persons.Deaf persons.

We selected SignMark because he achieved We selected SignMark because he achieved national recognition for his work (Eurovision national recognition for his work (Eurovision Song Contest), and because the films were Song Contest), and because the films were professionally shot.professionally shot.

Comedy

This was very challenging indeed, because This was very challenging indeed, because most Deaf comedy does not make non-signing most Deaf comedy does not make non-signing hearing people laugh, of course !hearing people laugh, of course !

So we went for a piece of satire – one which So we went for a piece of satire – one which showed Deaf people teasing hearing people.showed Deaf people teasing hearing people.

This was fairly ‘risky’ because hearing people This was fairly ‘risky’ because hearing people might take offence.might take offence.

But we felt that it was the best option available.But we felt that it was the best option available.

Princess Diana

We selected her because we wanted to show We selected her because we wanted to show that prestigious hearing people did come out in that prestigious hearing people did come out in support of Deaf community aims –support of Deaf community aims –

For example, her endorsement of the BSL For example, her endorsement of the BSL DictionaryDictionary

And her willingness to learn to sign.And her willingness to learn to sign.

But of course – expect the unexpected !

The comments the students wrote down on The comments the students wrote down on each film clip, and the discussions which then each film clip, and the discussions which then followed, revealed some very important followed, revealed some very important information about whether these were the right information about whether these were the right subjects, right film clips etc.subjects, right film clips etc.

Sarah will now say something about the selection of material that we chose to show laypeople

Reactions to the materialReactions 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

Results.Results.

UK students 22UK students 22Non-UK students 5Non-UK students 5Total 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

Measuring ChangesMeasuring Changes

The question again - The question again - “ Genes causing deafness from birth should be “ Genes causing deafness from birth should be selected for removal.”selected for removal.”

We used a 5 point scale – Strongly Agree > Agree > Unsure > We used a 5 point scale – Strongly Agree > Agree > Unsure > Disagree>Strongly DisagreeDisagree>Strongly Disagree

We then examined the differences on the scale between Stage 1 (before) We then examined the differences on the scale between Stage 1 (before) and Stage 3 (after).and Stage 3 (after).

When the views move towards disagreement, we refer to that as ‘Positive When the views move towards disagreement, we refer to that as ‘Positive Change’. Change’. When move towards agreement, ‘Negative Change’.When move towards agreement, ‘Negative Change’.

Overall Totals

‘Discipline’ Positive Change Negative Change No Change No Reply

Humanities 2 0 2 0Humanities 2 0 2 0

Law 4 2 1 3Law 4 2 1 3

Medicine 3 0 4 1Medicine 3 0 4 1

‘‘Social Sciences’ 3 1 1 0Social Sciences’ 3 1 1 0

TOTALS 12 3 8 4TOTALS 12 3 8 4

We can see from these left hand column figures clear evidence of a shift towards positive opinions.

Overall Totals for UK Students.

‘‘Discipline’ Positive Change Negative Change No Change No Reply

Humanities 2 0 2 0Humanities 2 0 2 0

Law 4 0 0 0Law 4 0 0 0

Medicine 3 0 4 1Medicine 3 0 4 1

‘‘Social Science’ 2 1 0 0’ 2 1 0 0

TOTALS 11 1 6 1TOTALS 11 1 6 1

The UK figures indicate a stronger shift towards positive opinions.

What Types of Opinion Shifts ?(a) Positive Shifts

Unsure to Disagree 7Unsure to Disagree 7Agree to Unsure 3Agree 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 1Disagree to Strong Disagree 1Strong Agree to Agree 1Strong Agree to Agree 1

These represent a change, but only of degree - not a key change.

(b) Negative Shifts

Unsure to Strongly Agree 3Unsure 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.

(c) Types of ‘No Change’

Unsure 4Unsure 4Disagree 1Disagree 1Strongly Disagree 1Strongly Disagree 1Strongly Agree 2Strongly 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.

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 discourseThis section is in two parts:

Part A: Common Themes:1 Knowledge about: s.14(4)(9) and Deaf issues2 Choosing genes: disability and deafness3 Would you have the deaf gene?4 Parental right to choose

Part B: Unexpected ‘surprises’5 State Intervention and consultation6 Are Deaf people ‘economically viable’?

Part A: Common Themes

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’it’s just an embryo at that stage’‘‘[even without PGD] you are choosing one or two and discarding the [even without PGD] you are choosing one or two and discarding the

others, so embryos are being rejected anyway’others, so embryos are being rejected anyway’‘‘embryos often spontaneously terminate after less than three months’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 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.

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 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…

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…

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.

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)

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 Slope

 

Testing 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 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)

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)

Part B: Common areas of discussion 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 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

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

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’

Group N discussion

Group M discussion

Speaker S: …Speaker S: …It could be really, it’s always very costly to have It could be really, it’s always very costly to have children with a disability because the world isn’t adapted…children with a disability because the world isn’t adapted…

Speaker E:…Speaker E:…I’d want my child to have kind of the best possible life 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 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…it 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 her personal reflections on running

the group interviews

Conducting the discussion groupsConducting 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 - medicsGood 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 viewsBad 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!