Jackie Leach Scully

0:02

JACKIE: My parents were taught to be afraid

0:04

that if I mingled with deaf children

0:07

who didn't speak quite as well as I did

0:09

that I might lose my capacity to speak.

0:20

There are a few bioethicists who've looked at me

0:24

and I think it just doesn't compute

0:26

that I could be a bioethicist and have a disability.

0:33

There's still an underlying feeling

0:35

that actually we'd be better off without disabilities

0:39

and without people with disabilities.

1:03

(STRING MUSIC)

1:05

The process of research

1:07

is never something that leads to a black or white answer.

1:12

It's like an explosion of colour and light.

1:15

It's kind of an ever-branching line of questioning and answering,

1:20

constantly becoming more and more complex.

1:26

At UNSW, I'm Professor of Bioethics,

1:29

and at the same time,

1:31

I'm Director of the Disability Innovation Institute at UNSW.

1:39

A bioethicist is someone

1:40

who's interested in the ethical,

1:43

and that often sometimes means social, political,

1:47

economic questions that are raised by new developments

1:51

in medicine, life sciences in general.

1:55

Bioethicists try to think through some of those questions.

1:58

Quite often they're called upon

2:00

to give some kind of input into policy or practitioner guidelines.

2:06

I very much enjoyed watching Jackie become a world leader in her field,

2:11

especially, I think, because she's not at all big-headed about it.

2:16

PROFESSOR WENDY ROGERS: Jackie's very well known internationally.

2:19

She is one of the leading disability bioethicists in the world,

2:23

and she's probably

2:24

the leading feminist disability bioethicist in the world.

2:29

She can talk to the professional bioethics community,

2:33

but also come over in incredibly down-to-earth language

2:38

that anybody could understand,

2:40

so I think she's an outstanding communicator.

2:45

JACKIE: Both my parents were...

2:47

They were the kind of people who would have benefited a lot

2:50

from more education than they had.

2:53

But they were both very bright, very probing,

2:55

and they encouraged me to be like that as well.

2:59

I can't remember a time when I wasn't reading.

3:02

I could read before I went to school.

3:04

I can remember when I was quite small

3:07

thinking that it might be possible to actually know everything.

3:13

My mother was also disabled.

3:15

She was born with only one arm.

3:18

I never saw her expose it.

3:20

She was always very careful to keep it hidden

3:22

because that was the culture at the time.

3:24

I think her life was seriously damaged by that.

3:29

My father's family was Anglo-Indian.

3:33

I was conscious of coming from a mixed race background.

3:36

I enjoyed the enrichment that having more than one culture gave to me.

3:40

But I think my father and his family had it quite hard.

3:46

I was eight years old

3:48

when I became ill with what was diagnosed eventually

3:52

as meningitis, meningococcal meningitis.

3:54

That resulted in me losing my hearing.

3:59

I lost all my hearing in my right ear.

4:03

I no longer bothered with that ear at all, really.

4:05

It's purely decorative.

4:06

And in the left ear, I've got about 5% of my original hearing left.

4:11

My parents were a bit at a loss.

4:13

The advice that they were given

4:15

was that probably it would be best not to expose me to music.

4:18

(LILTING MUSIC)

4:21

The music lessons stopped

4:23

and the piano got left behind when we moved house.

4:25

So that was the end of my exposure to music, really.

4:29

I wish they hadn't made that decision,

4:31

but they followed the advice that they were given.

4:36

It's really important that kids who have a hearing loss

4:40

or kids who are deaf are exposed to music in some form,

4:43

because there's always something that you can get from music.

4:50

I did go to a few ballet lessons when I was little.

4:54

In retrospect,

4:55

it had a lot to do with being interested in different ways

5:02

It's remained a major interest in my life.

5:10

Certainly when I was a child,

5:12

there was an intense drive to encouraging deaf children

5:17

to learn how to speak in the first place

5:19

and not to communicate using sign language of any kind

5:23

or finger spelling.

5:26

But I think it was a missed opportunity.

5:28

It would have been an enrichment

5:31

to be part of the hearing world and part of the deaf world

5:35

and to be able to have learnt and acquired sign language

5:39

as naturally as I could have done.

5:41

(MEDITATIVE MUSIC)

5:49

I have been really lucky in the teachers I've encountered.

5:52

There were teachers who made accommodations for me

5:56

at a time when it wasn't standard.

5:58

There was Helen Fowler when I was at primary school,

6:01

and when I was at secondary school,

6:03

there was a teacher called Debby Plummer.

6:07

She was the sort of pivotal person in the class.

6:12

They were not in competition with her.

6:14

They were hugely supportive of her.

6:17

JACKIE: She was a woman in science,

6:20

and she encouraged questions.

6:23

And she was also somebody who had not only been to university,

6:27

she'd been to Oxford.

6:29

She made it seem possible for me to think that I could do that as well.

6:33

I knew that Jackie was of the calibre to get straight into Oxford,

6:37

and I wanted her to have that chance.

6:42

Going to university was an option for me,

6:45

but I never imagined going to somewhere like Oxford or Cambridge.

6:51

I was interviewed by the biochemistry tutor at Hertford College.

6:56

There's a history of having sometimes disastrously low expectations

7:00

of what people with disabilities can do.

7:04

I went to the interview there more or less with the idea

7:07

that this was going to be really good practice

7:09

for other university entrance interviews that I might do,

7:12

you know, the ones that I might actually get into.

7:14

He asked me why I wanted to study biochemistry.

7:18

I said, "Because I like biology and chemistry."

7:22

You could tell from the expression on his face

7:24

that this was quite clearly the wrong answer.

7:27

And he moved next, immediately,

7:29

to what did I like to do outside of school.

7:32

So I said I liked modern dance,

7:34

and we had a 20-minute conversation

7:38

about forms of communication that were non-verbal,

7:41

about the connection between sign language and dance

7:44

and gesture and so on,

7:46

and it was a really interesting and nice conversation.

7:50

It was in a physics lesson,

7:53

and my headmistress came in

7:55

and started talking to my physics teacher at the front of the class,

8:00

and then they both turned and looked at me.

8:04

They'd received a letter,

8:06

and the letter was my acceptance at Oxford to read biochemistry.

8:12

At the end of four years,

8:14

I'd finished my undergraduate degree,

8:16

graduated and the next step would be to do a PhD.

8:22

I had been living in a graduate house, a shared house,

8:25

on the grounds of the college, and Monica was the person

8:28

who was moving into the room that I was leaving,

8:31

so she came to have a look at her new room.

8:34

On that first occasion, I wouldn't even let her into the room

8:37

because I was looking after a friend's hamster.

8:40

So I kept the door shut and we kind of had this weird conversation

8:43

through a crack in the door about, you know, that big.

8:46

And she moved into that room

8:48

and I moved into the room literally next door,

8:50

so she was the girl next door.

8:52

Do you know, I never did see the hamster.

8:54

(LAUGHS)

8:59

We were sharing a big house,

9:01

so we'd interact in the kitchen and meet and chat and so on,

9:05

and I thought she was really interesting,

9:07

and so I asked her out to the cinema, and she stood me up.

9:10

Twice. You stood me up twice, woman.

9:13

(BOTH LAUGH)

9:17

I think I've often felt in my life not marginalised or marginal,

9:22

I'd call it liminal,

9:23

which is sort of on the edge of two things.

9:26

Being mixed race, going to a fairly elite university,

9:30

but not from an elite background,

9:32

not really fitting in to these places.

9:38

If I'm pinned down,

9:39

I think there probably is a meaning to life,

9:43

and even if not, people need one.

9:46

Ultimately, I found my way to the Quakers,

9:50

the Religious Society of Friends, as they're called.

9:52

Every church has its own jargon.

9:54

The Quakers talk about holding in the Light, with capital 'L'.

9:57

So, the Light is something to do with, you know, the light of God,

10:00

the light of the spirit, however you want to think of it,

10:02

and in the context of a meeting for worship,

10:04

you're holding your thoughts in that light

10:07

and hope to be guided

10:10

so that you can discern what it is you're supposed to do

10:13

or your opinion or make a decision.

10:18

During my undergraduate degree in biochemistry,

10:21

I did wonder at the end of my first year whether I'd made a big mistake.

10:25

A lot of it I had not found particularly exciting.

10:28

Then we started doing molecular biology,

10:31

and particularly genetics and molecular genetics,

10:34

that had excited me then

10:35

and when I was looking at what to pursue as a PhD.

10:41

There were a few options that came up,

10:43

and one of them was a PhD at Cambridge

10:45

working on the development of mammary cancer,

10:49

tumours of the breast.

10:54

The idea was to try to be able to identify

10:57

the abnormal genes that were involved in particular steps

11:01

along the pathway to a breast tumour.

11:04

Nobody was going to do that kind of experiment on a human being.

11:07

We were working on mice.

11:09

It involved, first of all,

11:12

developing what we called a viral vector,

11:14

a kind of Trojan Horse.

11:15

What it does is infect, in this case, mouse cells.

11:24

Scientists who work on something like cancer

11:27

have a kind of quite divided attitude towards it, I think.

11:30

You know it's an important thing to be working on.

11:32

You also know that the whole process is so complex,

11:36

it's highly, highly unlikely you're going to be the person

11:38

to find, you know, the cure for cancer.

11:41

What your work is going to be is like, you know,

11:44

it's a little cobblestone on a very, very long road

11:47

towards that goal.

11:50

There would be a particular pattern that I would see

11:55

if I'd got the right vector.

11:57

And I remember there was a particular evening

12:00

when I'd been running the experiments during the day,

12:03

and on this occasion, the pattern was exactly right.

12:06

I kind of sat back in my chair and looked at it and said,

12:09

"Hello, gorgeous," because I was so pleased.

12:13

So I got the PhD effectively on the basis

12:16

of having constructed a functional viral vector

12:20

and going through the rest of the experiments

12:23

even if it turned out to be a negative result,

12:25

which is still a result.

12:27

(PENSIVE PIANO MUSIC)

12:29

MONICA: When we got talking about music,

12:31

she always asked very interesting and intelligent questions.

12:35

She didn't come with all the preconceptions

12:37

that all my musical friends had.

12:40

It made me look at music and how music works in a different way.

12:45

JACKIE: I knew from the outset that she was a musician.

12:49

When we realised that things were, you know, pretty serious,

12:54

I think I also realised that there was no future in this relationship

12:58

unless I at least experience something of music,

13:03

which was so important to her.

13:06

I had listened to and enjoyed

13:09

some of the pop and rock groups of the time,

13:13

so I could hear them and I could enjoy them.

13:17

I just felt that any other form of music

13:19

that was maybe more complex would be beyond me.

13:23

I had a real barrier about my own inability.

13:29

Since I've met Monica, I've been exposed to music again

13:33

and given more...more self-confidence in the fact that I can enjoy it.

13:40

The first concert I saw you in,

13:43

it was 'Zadok the Priest',

13:44

and I remember just being incredibly relieved,

13:48

as well as enjoying it,

13:49

but relieved that she was clearly very good,

13:52

and that I wouldn't have to try to think of something tactful afterwards

13:56

to...to say to her.

14:00

Monica and I got together

14:01

in the middle of all of the fearmongering in the 1980s

14:06

when the AIDS epidemic reversed a lot of progress

14:09

for gay and lesbian rights.

14:11

We had to be very careful who was aware of our relationship

14:15

and who was not.

14:17

It was a weird time, actually,

14:19

always sort of checking your pronouns.

14:23

You know, if you were talking about "my partner and I",

14:26

never actually saying "she".

14:29

But I remember having piano lessons

14:30

even after we...we exchanged rings

14:33

and taking my ring off for piano lessons.

14:36

I also remember the look that we got from the jeweller

14:38

when we went and bought the rings.

14:40

-And we were buying the same ring. -Oh, a filthy look.

14:42

-JACKIE: Yeah. -MONICA: Absolutely.

14:43

(REFLECTIVE MUSIC)

14:46

JACKIE: I had already been offered a job as a post-doc

14:49

in a place called Lausanne in Switzerland.

14:52

And the reason I thought of going to Switzerland

14:53

was because Monica, in fact, is half-Swiss

14:56

and she wanted to continue her conducting studies.

15:02

When we moved to Switzerland,

15:04

we knew that we were going to be in different cities,

15:06

and we still wanted to make a visible commitment to each other,

15:11

so we had a private commitment ceremony,

15:16

officiated, if you can call it that, by Debby.

15:18

Debby had left teaching and become a minister, an ordained minister.

15:25

It wasn't possible for it to be in the church building

15:29

because the Church of England didn't marry gay people or lesbian people.

15:34

But I could see absolutely no reason

15:37

why it couldn't happen on church property, in the vicarage.

15:40

We actually sat in a circle in Debby's house, and so it was...

15:44

-Like Quakers. -Yeah, she got Quakers too.

15:46

So it was pretty much a Quaker meeting

15:48

in that there was a lot of silence and then people read things.

15:52

And Debby kind of began and ended it.

15:56

Many years later, in 2008,

16:00

it had become possible in Switzerland

16:02

to have a civil partnership registered officially,

16:06

so on 4 April 2008,

16:10

we were able to go to the city hall in Basel in Switzerland,

16:15

where we were living,

16:17

and, you know, have this done officially.

16:23

I really struggled on a...you know, on a more social level

16:27

living in Lausanne.

16:28

The main reason for that

16:30

is that I, at least, found French very, very hard to lip-read.

16:34

The accessibility is...you know, it's quite patchwork and quite varied.

16:38

In one country, television captioning will be non-existent, for example,

16:43

whereas something else will be really well provided for,

16:46

and other countries, vice versa.

16:52

There was a fellowship that was being offered

16:54

by the Quakers in Britain

16:59

called the Joseph Rowntree Charitable Trust Fellowship.

17:02

These fellowships were awarded to Quakers who would offer

17:06

some kind of educational activity or training activity,

17:11

so I offered to do workshops and lectures

17:14

around the...the ethical issues to do with genetic engineering.

17:19

But that introduced me, for the first time, really,

17:23

to public engagement activities

17:26

and also to people's questions about the ethical significance

17:30

of the kind of science that I was doing.

17:34

It was working with Quaker groups in England

17:38

that drew me more into public engagement

17:42

and then, eventually, into bioethics.

17:44

I then had the very good luck

17:46

to meet Christoph Rehmann-Sutter,

17:48

who's now one of Switzerland's best-known bioethicists.

17:52

He was a philosopher moving into bioethics,

17:55

and he didn't have a science background.

17:57

I was a scientist moving into bioethics

17:59

without a philosophy background.

18:01

So it was a kind of match made in heaven, really.

18:04

Christoph and I joined forces.

18:06

We got a grant from the Swiss national research fund

18:09

and we set up the first interdisciplinary unit for bioethics

18:13

in Switzerland.

18:15

Bioethics is a branch of applied philosophy,

18:17

so we have to engage with the world and find out what's really happening

18:21

so that we can inform the arguments and try and make better decisions.

18:24

Part of what's happened in bioethics is what's called the empirical turn,

18:28

where people are actually doing research,

18:30

bioethicists are doing research with members of the public, for example,

18:33

so you find out a lot more valuable information

18:36

about what people think.

18:37

And Jackie was one of the pioneers doing this,

18:40

meeting with groups of people in the context of a formal research project.

18:46

JACKIE: I'm classed as an empirical bioethicist.

18:49

There's still quite a strong tradition in bioethics

18:52

of being very, very theoretical.

18:53

And I think theory is very important,

18:56

but you need to have some idea of the everyday realities

19:00

to work your theory on.

19:04

It's unusual to have a bioethicist who's disabled.

19:08

I have encountered some bioethics colleagues

19:12

who just seem to find it quite difficult to cope with me

19:16

because I'm a person with a disability

19:18

and they're not used to seeing peers and colleagues as disabled.

19:22

I felt that it's been more of an advantage than a disadvantage

19:26

to be able to bring that experience into my bioethical thinking

19:30

and also into bioethics in general.

19:35

There's a longstanding tension

19:38

between the world of bioethics and the disability world.

19:42

Bioethics can be criticised for oversimplifying a lot of things,

19:47

and one of them is disability,

19:49

and I think it centres on

19:51

what's seen by a lot of people with disability

19:55

as bioethics' defence of eugenic ideas.

20:00

I suspect that there's still an underlying feeling that,

20:04

"Actually, we'd be better off without them -

20:07

"without disabilities and without people with disabilities."

20:11

I think that's unfortunate,

20:12

because bioethics needs to know more about disability

20:16

in order to do its job better.

20:23

Ultimately, I was invited by the Quakers in England,

20:28

by the Religious Society of Friends,

20:29

to give the Swarthmore Lecture in 2002.

20:33

The Swarthmore Lecture

20:34

is the most prestigious piece of speaking and writing

20:40

that the Quakers do annually,

20:43

and she was asked to deliver it.

20:45

And the words "playing in the presence"

20:47

were the words that Jackie used for the title of her Swarthmore Lecture.

20:54

Science, for her, has been playing in the presence of God

20:57

all her life.

21:00

JACKIE: I'd been working with ideas

21:03

about disability in bioethics for some time

21:06

and gradually realising

21:08

that I felt that there was an approach to disability in bioethics

21:12

that was lacking,

21:13

and I wanted to introduce the idea

21:16

of what I call disability bioethics,

21:18

which was starting

21:19

a bioethical exploration

21:21

from a starting point

21:23

of the perspective of people with disability.

21:26

Uh...thankful and grateful.

21:29

JACKIE: I don't think anybody else, at least at that time,

21:32

was doing anything similar.

21:34

That's a hard one.

21:36

Um...I don't know.

21:40

In the early summer of 2015,

21:45

I felt quite tired, quite rundown,

21:47

and I thought I had, you know,

21:49

a summer cold or flu, something like that.

21:51

It was the following weekend,

21:52

I had to go away for a meeting and returned on the Saturday,

21:57

and on Sunday, Monica said to me, "You've gone yellow."

22:00

So, we decided we'd better get this checked out.

22:02

I was fairly convinced

22:04

that we were making a big fuss about nothing in particular.

22:08

The medical team's reaction on seeing my blood results

22:11

suggested that something was actually quite, you know, quite wrong,

22:15

and I was admitted to hospital.

22:17

I had a viral infection which, for some reason,

22:19

had really badly affected my liver.

22:23

I think I was in there for about a week

22:25

when somebody first mentioned the idea

22:28

that I might ultimately need a transplant, a liver transplant.

22:33

Well, the news that she needed a transplant was shocking.

22:37

It wasn't surprising at that point, I have to say,

22:40

because I knew pretty much she was dying,

22:44

because she was going into sort of multiple organ failure.

22:47

I remember sort of looking at my pee and seeing that it was dark green -

22:51

it was the colour of spinach -

22:53

and thinking quite objectively,

22:55

"That means my kidneys are packing up too

22:58

"and I'm going into organ failure."

23:00

And I knew... I knew I was dying.

23:02

(SOMBRE MUSIC)

23:07

It's very churning up

23:09

when you're faced with a very close friend who may not survive.

23:16

I just had to be real

23:18

and I just said, "I don't want you to die."

23:22

And she said, "I don't want to die either."

23:25

And I just handed everything over to the god who I believe is a healer.

23:29

And then I blessed her.

23:34

JACKIE: I remember being wheeled down

23:37

and looking at something like an air duct

23:41

on the wall of the room before you go into the theatre,

23:45

and then the next thing I knew, I was looking at the air duct again.

23:50

The surgery had been, you know, successful.

23:57

It's always going to be a mixed thing,

24:00

because neither of us is ever going to forget

24:02

that in order for her to survive,

24:04

someone else's family lost a loved one.

24:16

In 2017, I was elected

24:20

to a fellowship of the Academy of Social Sciences

24:24

in the UK.

24:29

The fellowship was a recognition

24:31

of her outstanding contributions to the field,

24:36

and I think it's not a...

24:39

..it's not an honour that many people get.

24:42

It's a mark of esteem to be elected to be a fellow.

24:44

You can't just apply.

24:46

For most of them, you have to be nominated by someone,

24:48

so other people have to think you're good.

24:50

And Jackie's a fellow of two royal academies -

24:53

not only the Academy of Social Sciences,

24:55

but also the Academy of Arts.

24:58

So the arts one would be recognising her contributions

25:01

via her philosophical bioethics work,

25:03

and the social science one would be recognising

25:05

her contributions through the empirical work.

25:09

(POIGNANT MUSIC)

25:14

It's one of the two occasions in my life

25:17

when I've received a letter

25:19

that I was quite sure had been misdirected

25:22

to somebody else called Jackie Leach Scully.

25:25

(POIGNANT MUSIC CONTINUES)

25:31

I had been at Newcastle University for 13 years.

25:36

I was director of the Policy, Ethics and Life Sciences Research Centre.

25:41

I didn't see myself moving.

25:44

And then I was approached by UNSW

25:48

to see whether I'd be interested in heading up

25:51

the new institute that they were planning to open,

25:54

the Disability Innovation Institute at UNSW.

26:03

There have been one or two academics with disability

26:06

who have been influential on me,

26:10

but very, very few - we're quite rare.

26:13

That's a real problem.

26:15

I would like to think

26:17

that younger academics, younger students,

26:20

can look further up the ladder

26:21

and see professionals with whom they can identify -

26:25

they can see themselves in those positions.

26:30

Definitely, earlier on in my career,

26:32

I wouldn't have mentioned that I was deaf.

26:35

If I was making an application,

26:37

I certainly wouldn't mention it at all.

26:38

If I got as far as interview,

26:40

it would be, you know, "I have a little problem with hearing."

26:45

I mean, I certainly don't do that now.

26:48

In part, that's to do with becoming

26:50

just more established and more confident in your profession.

26:55

It's also a change externally.

26:57

It's the way that society has changed to become more accepting of diversity

27:00

and of people with disability as well.

27:06

MONICA: I think it's been really exciting

27:09

to watch the journey that Jackie's taken

27:11

from molecular biology through to bioethics.

27:19

We've been together for 33 years.

27:22

Both of us are quite stubborn

27:25

and decided we wanted this to work,

27:28

so whatever difficulties we've had,

27:31

we've worked through them.

27:33

That's why we're still together.

27:39

JACKIE: One thing I often get asked is, "If you could take a pill now

27:44

"and have your hearing back, have your disability removed,

27:48

"you know, you would have it, wouldn't you?"

27:51

I'm honest in saying that, actually, no, I wouldn't.

27:59

I've been deaf long enough

28:00

that I manage my deafness and my life perfectly well

28:04

in order to have the life that I want.

28:08

I've gained a lot from the things that come along with disability.

28:13

It is me. It's part of my identity.

28:17

(STIRRING MUSIC)