1 Disability and Difference - PowerPoint Presentation

Slide1

1

Disability and Difference

Professor Julian

Savulescu

Slide2

Case 1. The Famous Deaf LesbiansIn

2001, Sharon Duchesneau and Candy McCullough, a deaf lesbian couple had their second child GauvinThe women, who wanted to have a deaf child, conceived

Gauvin

through Artificial Insemination by Donor (AID), using sperm from a friend they knew to have five generations of inherited deafness in his family

2

Slide3

Case 1They argued that

:deafness is an identity, not a medical affliction that needs to be fixeddesire to have a deaf child is a natural outcome of the pride and self-acceptance many people have of being deafhearing child would be a blessing, a deaf child would be a special blessing

they would be able to be better parents to a deaf child than to one who was hearing

the child would grow up to be a valued member of a real and supportive deaf

community

“Deafness is not a disability”

3

Slide4

Case 2. Cochlear implantsJane and John are members of the Deaf CommunityTheir 2 year old son, Henry, is found to be deaf

They refuse the insertion of a cochlear implant because they argue that deafness is a difference, not a disabilityHenry will be a much loved member of their community and able to communicate with sign language

Slide5

Case 3. Dwarfismtwo

achondroplastic dwarfs request PGD to select an embryo with dwarfismthey argue that being little is not a disability, it is a difference

their house and lifestyle have been modified for their short stature

.

they claim that they would be better able to rear a short child rather than a normal child

5

Slide6

Case 3 Body Integrity Identity Disorder

John is a want-to-be amputee. does not identify with a body with 4 limbs and requests an amputation

attends conferences with amputees and is sexually attracted to them, wanting to be one of them

.

has investigated seriously how to amputate his own leg below the

knee

has undergone extensive counselling and psychiatric therapy but the desire

persists

is depressed as a result of having 4 limbs and considering

self-amputation

would use a prosthesis if amputation was provided

6

Slide7

Case 4 Ashley CaseAshley, a nine-year old from Seattle who was born with “static encephalopathy

”severe brain impairment that leaves her unable to walk, talk, eat, sit up or roll over will remain at a developmental level of a three month old

baby

in 2004, high-dose

estrogen

therapy to stunt Ashley’s growth, the removal of her uterus via hysterectomy to prevent menstrual discomfort, and the removal of her breast buds to limit the growth of her breasts

7

Slide8

Case 4

Ashley’s parents argue that the Ashley Treatment was intended “to improve our daughter’s quality of life” and not to convenience her caregivers. "Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc."

8

Slide9

Species Norm Account of DisabilityDisabilitySN

A stable intrinsic property of subject S that deviates from the normal functioning of the species to which S

belongs

9

Slide10

ProblemsNeed

to specify “subfunctioning”Descriptive but not evaluative concept, but disability is part evaluativewe speak of people as

suffering

from a disability.

we take a disability to be a misfortune to those who suffer it, something that makes their life worse, and thus something that gives us reasons to try to avoid or correct it

10

Slide11

Evaluative DisabilitySNDisabilitySN+E

A stable intrinsic property of subject S that deviates from the normal functioning of the species to which S belongs, and simply

because of that

makes S’s life go worse, and therefore gives reasons to avoid, regret and correct it.

Problems

Statistical norms have no intrinsic normative significance

Loss of hearing and sexual functioning are statistically and biologically normal with age, but still disabling

Because of effect on well-being

11

Slide12

Social ModelReject normative significance to statistical or biological deviations or DIFFERENCE or DIVERSITY

“…a social discrimination that limits opportunities of persons of difference....[and] results only when physical difference is not accommodated by society.” Tom Koch“Disadvantages are … effects not of biomedical conditions of individuals, but rather of the socially created environment that is shared by disabled and nondisabled people. This environment… is so constructed that nondisabled people are privileged and disabled people penalized. Disability is a social problem that involves the discriminatory barriers that bar some people but not others from the goods that society has to offer.” R. Amundson

12

Slide13

Social Model of DisabilityDisabilitySM

A stable intrinsic property of subject S whichdeviates from the normal functioning of the species to which S belongs (i.e. a

disabilitySN

)

and

which tends to reduce S’s level of well-being

because

members of the society to which S belongs are prejudiced against such deviation from the normal

13

Slide14

Wider ConceptDiscriminated Trait

A stable property of subject S which tends to reduce S’s level of well-being because members of the society to which S belongs are prejudiced towards people with this property

race/skin colour/sexual orientation

14

Slide15

Social ModelDisabilitySM singles out a genuine form of harm

a harm for which many people are morally responsiblethe question is whether this concept captures everything that might be said about the evaluative connection between disability and well-being

15

Slide16

Welfarist AccountDisabilityW

A stable physical or psychological property of subject S that leads to a reduction of S’s level of well-being in circumstances C

Disadvantage or Harmful Trait

16

Slide17

Prejudiceunjust attitudes are bad because of their effects and bad in themselvesthus we should give priority to correcting them, rather than disability they cause

But are all reductions in well-being caused by unjust attitudes?17

Slide18

Realistic Conditionscannot be that prejudice exists just in case there is a conceivable possible

world in which a putative disability has no effect on well-beingparalysis may not make a difference to well-being if we all possess powers of levitation and telekinesisbeing deaf or mute would make little difference if we were all telepathic For something to count as a prejudice it must be the case that there is some

realistic

possible situation, where having X wouldn’t reduce S’s well-being (McMahan and Fortune)

18

Slide19

Example of PrejudiceAnita Silvers points out how a simple change in automobile styles has affected the mobility of people who need wheelchairs to move:

[I]f two-door sedans are available, an individual with a folding wheelchair can drive independently, pulling the chair into the car behind the driver’s seat. But the design of four-door cars precludes this manoeuvre. Consequently, the rarity of the once common two-door automobile has attenuated the mobility of many wheelchair users who can get into a two-door but not a four-door car

19

Slide20

Distributive Justice and PrejudiceBUT the very fact that a person’s well-being is reduced because of her social environment—because of the beliefs, attitudes and behaviour of others, and because of the structure and distribution of resources in her society—doesn’t yet show that this person is discriminated against.

for there to be prejudice, these beliefs, attitudes and social arrangements also need to be mistaken and unjust

20

Slide21

Distributive JusticeIn order to claim that all

disability is the result of prejudice, we would have to show that all social arrangements which fail to promote everyone’s well-being equally is unjust.We would have to accept something like:

Absolute

Welfare Equality

Any social arrangement which results in some members of a society having, through no fault of their own, less welfare than others is unjust

but this is a very implausible principle of distributive justice

tall people and low door

frames

21

Slide22

Distributive Justicesome failures to socially correct the harmful effects of some biological or social trait are JUSTthe point is the rather banal one, often ignored by advocates of the Social Model, that not all reduction of well-being due to social factors amounts to discrimination—amounts to Discriminated Trait or disabilitySM

very label of the ‘Social Model’ embodies this conflationA better label would be the ‘Social Injustice Model’.

22

Slide23

Barnes’ Social Model

Elizabeth Barnes, “Valuing Disability, Causing Disability,” Ethics, 125 (2014): 88-113.

Slide24

“Disability rights activists often claim that being disabled isn’t something that’s bad for you.

Disability is, rather, a natural part of human diversity - something that should be valued and celebrated, rather than pitied and ultimately ‘cured’.” “having a disability makes you nonstandard or different, but it doesn’t by itself make you worse off.”

p.89

.

Slide25

Mere Difference View

Once we set aside the effect of common prejudice against the disabled, disability does not make a person overall worse-off. It’s merely a difference, like gender and sexual orientation

.

Slide26

Unacceptable Implications Objection to Mere Difference View

Would be permissible to cause disability (Barnes)

Would be

impermissible

to ‘cure’ disability

(Barnes)

Additionally:

Would mean prospective parents have

no reason to prefer to create

an able-bodied child rather than a disabled one.

Would be

misguided

to

expend resources

developing

ways of preventing or removing disability.

(

John Harris, Peter Singer, Jeff McMahan, Guy Kahane)

Slide27

Barnes’ Goal 

To prove that the Mere Difference View doesn’t entail that it would be permissible to cause a non- disabled person to become disabled

Slide28

Barnes

Unacceptable Implications Objection fails to advance the dispute between defenders of the Mere Difference View and their critics. When it does appear to have force, it

fails

to have “independent

traction”. It is based on ableist

intuitions

.

Slide29

Today’s Talk

I will argue that generally such debates are based on subjectivist accounts of value and fail to take account of objective components of well-being

Slide30

Disability and Well-Being

Mere Difference View may allow that some disabled people’s lives are worse or have lower well-being

But

the Mere Difference View

denies that

this reduction in well-being is due to the disability itself.

 

Instead,

negative effect on

well-being is due only/ largely

to social

prejudice:

(1) prejudiced

attitudes of individuals

and

(2)

unjust social arrangements

Slide31

Detrimental (Bad)Difference View

Most

of the conditions commonly described as disabilities are significantly likely to considerably reduce an individual’s level of well-being

in the contingent physical and social environment that we actually inhabit

, and that this would remain so

even if prejudice against disabled people were removed.

See

Guy

Kahane and Julian Savulescu,

“The

Welfarist

Account of Disability,” in Kimberley Brownlee and Adam Cureton, eds., Disability and Disadvantage, (Oxford: Oxford University Press,

2009),

14-53.

Slide32

What the Detrimental (Bad)Difference

ViewDoes NOT say:

That disability

is intrinsically bad, or necessarily a great

harm

That “d

isability

is

by itself

something that makes you worse

off”

(Barnes, p.

89)

That

d

isability always (or even nearly always) leads to reduction in well-being, independently from one’s contingent physical and social environment.

Slide33

Detrimental or Bad? Barnes opposes the Mere Difference View to a view she calls the Bad Difference View.

But to reject the Mere Difference View, we needn’t believe that disability is bad.

The

claim is only that,

in the world we inhabit, disability tends to significantly reduce one’s good options

, even when

we set aside the impact

of societal prejudice against the disabled, and that therefore disability

tends to

make a person overall worse off

.

Slide34

The Value of OptionsAssumption: if

someone lacks a wide range of valuable options then their quality of life is likely to be lower than someone who does have these options

To lack certain basic sensory, physical or cognitive capacities is,

in the world we actually inhabit

, to also lack a broad range of valuable options and opportunities, as well as to find many of the remaining options significantly harder to pursue, compared to a similar person who has these capacities.

Slide35

Barnes’ Response: Unique Goods

“

The mere-difference view also needn’t deny that disability involves the loss of intrinsic goods or basic capabilities and… It’s just that… the

very same thing which causes you to lose out on some goods

unique to

nondisability

allows you to participate in other goods

perhaps

unique to disability

.”

Slide36

Response to Barnes: Balance

To be compatible with the Mere Difference View, it isn’t enough that disability also has some benefits, or (as Barnes points out later) that it also opens up some distinctive options.

Almost

anything will be associated with

some

potential advantage or will open up

some

new options.

For

the Mere Difference View to be viable, the positive effects have to

balance

the negative ones.

Slide37

Unique Benefits ExamplesDeafness- commonly cited benefits include:

More intense relationships from visual recognitionParticipation in a unique culture

Even then, asymmetry

between the disabled and abled.

A

deaf person cannot listen to classical music, but a hearing person can learn sign language.

A hearing

person has the second-order option of removing her ability to hear, whether temporarily or permanently, and thereby gaining access to further options that perhaps require being deaf.

At present

there is nothing that a completely deaf person can do to access the options available only to those who can hear.

Slide38

Qualifications and Balance

There may be some experiences that are uniquely associated with congenital deafness and which would still be barred to a hearing person. Note that turning oneself disabled may involve transition (and social) costs that may count against, for example, a hearing person exercising the option of becoming deaf.

These

experiences may have

distinctive value

, but it seems

doubtful that the benefits they confer could outweigh the loss of options

.

Slide39

PrejudiceKey difference between Mere Difference and Detrimental Difference view is whether

prejudice and injustice are the only cause of loss of options associated with disabilityAgree that prejudice and injustice are a major problem

The

prospects of disabled people could, and most certainly

should

, be better than they actually

are

But does not alone account for the whole loss of options

Further discussion:

Kahane &

Savulescu,

“The

Welfarist

Account of Disability”.

Slide40

Barnes: Why the Mere Difference View Does Not Make it Permissible to Cause Disability

“in general the inference from ‘x is mere-difference’ to ‘causing x is permissible’ isn’t one we accept, and thus that we shouldn’t accept the inference from ‘disability is mere-difference’ to ‘causing disability is permissible’.”

It is impermissible

to cause a person to become different in some way,

even if that difference doesn’t involve any reduction in well-being

.

Barnes, p.94

.

Slide41

Value, Changes and ConsentImpermissable

: To cause someone to change gender without their consent is to grossly interfere with their life

Value: We don’t

think that being a man (or a woman) is to be

worse-off

Impermissable

: to

change someone’s hair colour without their consent

This

implies nothing about the value of hair

colour

Ibid

., 95.

Slide42

Barnes: Transition Costs

Even if, say, being deaf is merely a difference,

becoming

deaf might be painful and demanding

, and

therefore harmful

.

Again, similar

considerations would count against causing a change in sexual orientation or gender, or even hair

colour.

Barnes, p.96

.

Slide43

Cases Where Consent and Transtion

Costs are IrrelevantBarnes notes that even where consent / transition costs are not irrelevant there are still examples where it is

impermissable

to cause disability, e.g.

Causing

an infant to become

disabled

Slide44

Barnes and the Infant Case

Argues the Mere Difference View can still resist the conclusion that these acts are permissible.

Counter- example: causing

a male

fetus

to become female to be deeply problematic, without thereby holding that being female is worse than being male.

General principle

of

non-interference: we

“

should refrain from drastically altering a child’s physical development.”

Such

a principle would also block the permissibility of causing an infant to become disabled, even on the Mere Difference View.

Barnes,

98.

Slide45

Mere Difference and the Principle of non- interference

– Response to Barnes

Principle of non- interference should apply in the same way to causing disability and removing it

Few believe that removing

disability from a

fetus

is

as wrong as

causing a male

fetus

to become female, or causing a

fetus

’ hair

color

to change from red to brown,

or causing

an abled

fetus

to become disabled.

Slide46

BarnesConcedes that attempts to defend this asymmetry are not plausible

Proponents of the Mere Difference View need to endorse the symmetry:

Must hold

that

it would be wrong

to cause a deaf

fetus

or child to become hearing—or even to remove very severe intellectual and bodily disabilities. And they must also hold that

doing that would be

just

as wrong

as causing disability.

Slide47

Real Problem: Bad Intuitions

Failure to cure a foetal disability is not problematic from the point of view of the Mere Difference

View

They seem impermissible due to a belief disability makes one worse off.

This belief is caused by prejudice and ignorance

These intuitions

therefore have no force against the Mere Difference View

Slide48

Bad Intuitions

If someone unknowingly puts herself at great risk of becoming disabled, and a bystander who could prevent this does nothing, no issue of unconsented interference arises. If

a natural process is about to

preventably

turn an abled

fetus

disabled, non-interference, if it implies anything, implies that we should do nothing.

These

are implications that many will find

unacceptable

Barnes does not deny these implications, but argues that the reason they seem unacceptable to many is due to bad intuitions about disability

Slide49

Other Counterintuitive Implications

Further implications of the Mere Difference View that Barnes considers and endorses:

Permits prospective

parents to create disabled children when they can easily create abled

ones

Permits prospective

parents to

behave—even

for frivolous reasons—in ways

that cause

the

future

child to be severely

disabled

Resources

and effort expended in finding ways of preventing or removing (curing) disability are unjustified.

Argues intuitions against these are

based on prejudice and misunderstanding about the lives of people with disability

Slide50

I will argue that generally such debates are based on subjectivist accounts of value and fail to take account of objective components of well-being

Slide51

Wellbeing

Slide52

“What I object to - without any reference to question-begging - is unsupported appeal to the assumption that disability is something bad or sub-optimal

. My claim is that if causation-based objections implicitly rely on such an assumption, they do not further the debate. Moreover, I think such an assumption is unwarranted given the specific sociopolitical

context in which we are discussing disability”

Slide53

Privileged Access

Have to appeal to the life experiences of people who have a condition in order to evaluate that

position

Intersex example – option

enhancing

But

value

claims

still

have to be evaluated.

Slide54

Barnes:

“That’s not at all to say that what disability activists say about disability issacrosanct or infallible

. Far from it. It’s just to say that you

need very good reasons

to say that the Disability Rights/Pride movement is systematically mistaken when they say that disability is not something bad or sub-optimal.”

Slide55

Barnes’ Diagnosis:

“This is not to charge those who make these objections with begging the question; it is to charge them with doing nothing more than relying on their intuition.”

Slide56

Underlying Assumption

1. Subjectivist about value

The kinds of psychological studies that Barnes cites are subjectivist accounts of well-being: either hedonistic or preference satisfaction.

 

2. Threshold view of well-being

Slide57

Evidence of Subjectivism

“Current evidence suggests, for example, that non-disabled people are strikingly bad at predicting the life satisfaction and perceived wellbeing of disabled people. For an introductory summary see Loewenstein, G and Schkade, D (1999) ‘Wouldn’t It Be Nice? Predicting Future Feelings’, in Daniel

Kahneman

, Ed

Diener & Norbert Schwarz eds

, Wellbeing: The Foundations of Hedonic Psychology,

pg.

85-105.”

Slide58

Problems for Subjectivity/Relativity of Value

Does

not track

intuitions

about

value

Freedom/Opportunity

Objective Goods

Slide59

Problems with Subjectivism: 1. Adaptation

“In

a well cited study, becoming a paraplegic has very negative effects on a person in the short term- it causes a significant decrement in subjective life satisfaction. However, over time, quality of life returns to nearly normal. Many paraplegics adapt to their state (

Kahneman

and

Varey

1991, 144). If they are less happy than normal people, the difference is not great (Brickman, Coates and

Janoff

-Bulman 1978

).”

Slide60

Adaptation

Phenomenon of adaptation and such studies measure subjective quality of life (Brickman, Coates and Janoff

-Bulman 1978). Yet the loss of independence and mobility are serious disadvantages (though clearly ones whose badness depends on the built environment).

Similarly, the loss of a loved one is bad but

people adapt subjectively

- they get over their grief surprisingly quickly (see Moller 2007). Nonetheless the loss of a loved one, such as a spouse or child,

makes one's life go worse in objective terms, no matter how well or quickly one subjectively adapts.

 

Slide61

2. Don’t Track Value

Subjectivist theories of well-being, even highly qualified ones,

do

not track value (Savulescu, 1999).

E.g. Peter

who has six months to live may desire to live with 100 units of preference strength. Paul who has 60 years to live may desire to live with 100 units. On a subjective account, their lives appear to be equally good

.

P

eople

differ in the degree to which they "happen to fear death or even want to live, which is a feature of their individual psychology." (Savulescu, 1999, 407

)

The problem with subjectivist accounts of well-being—and more generally of value or reasons—is that such accounts are, at base, unfettered: one can literally desire anything. Hume was one of the few people to confront this aspect of his own theory. He admitted that, on his view

,

“

’tis not contrary to reason to prefer the destruction of the whole world to the scratching of my little finger.” (Hume 1978, 416)

Slide62

3. Freedom/Opportunity

Same happiness/satisfaction but different opportunities/capacities (Sen - capabilities)

Monolingual vs

Bilingual

Sign vs Hearing =Sign

Slide63

Wellbeing

HAPPINESS

DESIRES

OBJECTIVE GOODS

Social relationships

Love

Family/ children

Achievements

Developing talents/ abilities

Moral goodness

Creativity

Physicality

Sex

Slide64

4. Objectivity About Value

Parfit & Griffin: 3 theories of well-being:

hedonistic, desire fulfilment and objective list theories

.

Parfit on Objective

List

Theories:

"[C]

ertain

things are good or bad for people, whether or not these people want to have the good things or avoid the bad things. The good things might include moral goodness, rational activity, the development of one's abilities, having children and being a good parent, knowledge and the awareness of true beauty. The bad things might include being betrayed, manipulated, slandered, deceived, being deprived of liberty and dignity, and enjoying either sadistic pleasure, or aesthetic pleasure in what is in fact ugly." (Parfit, 1984)

Slide65

Griffin (1986): "prudential value theory"

A form of objective list theory. List

of prudential values includes:

accomplishment

, "the components of human existence" (including autonomy, basic capabilities and liberty), understanding, enjoyment and deep personal relations

.

Slide66

Objective List TheoristsObjective List Theorists, sometimes also called Perfectionists, include Aristotle, Plato, Aquinas, Leibniz, Adam Smith, Hegel, Marx and Nietzsche.

Aristotle: what is good for a human is determined by the function of that organism or its nature. For example, humans are social animals who derive meaning, pleasure and fulfillment through social relationships. Humans are also curious and inventive, and knowledge, creativity and inventiveness

characterise

the human organism.

Slide67

Which Account? Each of Hedonistic

, Desire-Fulfilment and Objective List theories - has some plausibility. Parfit concludes: and adequate account of well-being must accord weight to all of valuable mental states, desire-satisfaction and objectively valuable activity. (Parfit 1984, 502).

It

may be best

not only to engage in activities that possess objective value, but to also want

to engage in such activities, and to derive pleasure from them

Slide68

Context Relativity of Value

We cannot predict the future environment Cannot predict what set of biological dispositions will be maximally advantageous. Genetic diversity is said to protect against a variety of unforeseen infectious insults.

Put

broadly,

one cannot say what a good genome is without considering the environment in which that organism is living.

Slide69

Context relativity of ethics

Instrumental value claims are highly context

sensitive.

Argued

that deafness would be

an advantageous state in a very noisy environment

.

Defined

capability and disability as

stable biological or psychological traits

that

either tend to increase or reduce well-being

in a

given set of social and natural circumstances

(

See Kahane & Savulescu, 2009; Savulescu et al., 2011).

Slide70

Context and Value

Context sensitivity is not value relativity. Insofar

as one can

predict the likely environment

, one can predict which biological and psychological traits are

likely to be conducive

to a better life.

E.g. Dyslexia

may not have been of significance in the African savannah, or it may have been associated with positive traits of

advantage,

but today it is a significant disadvantage.

(It

may be associated with other mental capacities that outweigh its badness but in itself, the inability to read is a disadvantage.)

Slide71

Context and ValueImpulse control and IQ are both traits that are of advantage in the contemporary environment.

We have made the point that deafness could be of advantage in certain environments but in the range of environments a person is likely to encounter in the actual world, it is likely to be

a disadvantage

Kahane

& Savulescu, 2009; Kahane & Savulescu

forthcoming

).

Slide72

Context Relativity and Deafness

Some claim conditions

like deafness are

only disadvantageous because of social injustice

.

Argue while

prejudice and injustice do play an important

role

,

this is not the whole story.

Even without

prejudice and injustice

deafness

would be associated with

residual

disadvantage.

E.g. reducing

access to

options

and goods derived from music and sound.

Residual

disadvantage

might be quite small compared to the current disadvantage

but it would still likely

exist,

Slide73

Plurality Compensates Objection

There are other goods—e.g. of

family/ relationships—that

one can still enjoy if one is deaf.

Life

can still be very good even if it doesn’t contain auditory goods because it contains other significant goods.

Correct, but from

the perspective of selecting embryos or decisions about children,

a future hearing child can have

both

music and relationships

, while a deaf child cannot have music.

Having

hearing is associated with

the same and additional options.

Slide74

Incommensurable Goods Objection

Cannot compare the lives of the deaf and the hearing as

certain goods are incommensurable

.

Even so,

the point remains that a hearing life

can

contain

more of the relevant kinds of values

than a life which give no access to sound.

A

hearing musician might also be

lonely

and unhappy. Her well-being

would be poorer to that of most deaf people who enjoy deep relationships with other

s.

The fact some

deaf lives are better than some hearing lives doesn’t change the point that

before conception

we can expect that, in current circumstances, hearing lives have

greater

prospects

for wellbeing by

offering access

to a wider range of goods.

Slide75

ImprecisionA misconception about objectivist accounts of well-being is that

commits to a precise ordering of all lives, from very best to very worst. Genetic

selection:I

argue there

will be many "equally good genomes" (Savulescu 2014, 2015).

“Equally good“:

similar to

Derek Parfit's

recent concept of imprecision about goodness

.

Parfit uses an example

from Ruth Chang - who is a greater genius, or achieved more: Einstein or Bach? Parfit argues that "the truth could be only that one of these people was imprecisely greater than the other, or more plausibly that

they were imprecisely equally as great.

" (Parfit Draft)

Slide76

Bach and EinstienParfit uses an example from Ruth

Chang:“Who is a greater genius, or achieved more: Einstein or Bach? Parfit argues that "the truth could be only that one of these people was imprecisely greater than the other, or more plausibly that they were imprecisely equally as great.

" (Parfit Draft)

Bach

and Einstein also clearly had

different genomes.

Perhaps one of these genomes was better.

More likely that

their genomes cannot be compared precisely.

Slide77

Perhaps we can't compare the genome of Bach and Einstein, or their achievements, or perhaps we want to say, with Parfit and Chang, that they are imprecisely equally good (or ‘on a par’),

Their achievements are obviously greater than those of a human being with anencephaly, or, for that matter with very profound intellectual disability and an IQ of under 15.

Slide78

Which Life is BetterMay

not be possible to tell which life is going better:Is it better to gifted at music, chess or sports?

Is

it better to be creative but disposed to mental illness, or uncreative but happy?

There

may be no precise answers to these questions but this should not preclude us from saying that the genome of Bach is

likely to be better

than

many

ordinary, normal genomes

.

This point applies to many of the cases we have discussed.

Slide79

Even if there are no precise answers

to questions about whether enjoying music is better than reading novels, or having more friendships is better than knowing deep truths about the universe, this hardly means that we can

never compare and rank

the prospects of possible future people and states of existing people.

It

is

generally better

to be

hearing

than to

be deaf

in the sense that

while the deaf can enjoy very many goods, and lead good lives,

the hearing have (or potentially) have access to the very same goods as well as to the goods uniquely associated with hearing.

Of

course, a particular deaf individual

may have a better life

than a particular hearing individual.

But

deafness reduces access to some objective goods and there is nothing

objectively good

about deafness

considered in itself

(Kahane and Savulescu, 2009)

Slide80

Satisficing

If injustice were removed, many or perhaps most people with disabilities

could have very good lives, perhaps even the best of lives

.

If

one accepts a satisficing view of well-being, their well-being is good enough.

As

a political and social goal, this

is important

.

We

are asking the

philosophical question

: are their lives on average the same or worse

in terms of well-being.

Slide81

Even this question is not precise enough: many people without disabilities have lives deficient in both subjective and objective value

. The

question which we should ask

is:

Does

disability

represent an impediment

to having the

best potential life

for that person. Our answer is yes.

That is why disability is not a mere difference

.

Slide82

We agree with disability advocates

that:many non-disabled people underrate both the subjective and objective value of the lives of people with disability

.

prejudice

and injustice significantly reduce the well-being of people with disability

and these

ought to be alleviated

.

But

we disagree that

disability is a mere difference

.

Like

asthma and many other things I have, it

represents an impediment to the best life.

Slide83

Challenge, Struggle and the Best Life

Objection: some impediments are necessary for achieving the best life.

Overcoming obstacles makes us better people

.

Response: A

dults

ought

to choose

which impediments they want and which they wish to remove

.

Children

and those not yet

born: ought

to start life with the least impediments. They will face

many social, natural, psychological and biological misfortunes

that will present

more than enough impediments

to well-being which they can choose to exercise their power over. After all, we will all age and die, later if we are lucky.

Slide84

Intersubjectivity of value

We

are social beings and

not all of the social value of our existence is a matter of justice

Slide85

No Such Thing as Blind Culture.

By Barbara Pierce

“I

think that a separate culture develops

when barriers exist interrupting the communication

between members of the group in question and the larger society.

Hispanic people, or any group using languages other than English as their preferred tongue

, often

draw together and communicate in their own language.

They may have a

distinct cuisine, literature, music, even religion.

They may

function in the larger society

, but they naturally

gravitate toward others who share their life experience

. Deaf people frequently use American Sign Language as their preferred method of communication. They recognize this as a distinct language. Even the written communication of profoundly deaf people is often characteristic of their culture and quite different from standard English composition. For this reason and because they frequently have difficulty communicating with hearing people at all without an interpreter, they talk about the "deaf culture." It is

not uncommon for deaf parents to be relieved when they learn that their baby is also deaf

so that they

will not have to live constantly in two cultures

.

Blind people have no problem communicating with other English speakers.

Braille is not a language since it is used to write any language

. It is merely

a tactile method of writing

. And, as you can see,

blind people have no difficulty using a computer to communicate in written English

. Blind people

do not congregate in living groups or in order to enjoy a shared lifestyle, religion, political outlook

, or

any other similarity of experience

that holds a cultural group together. Today

you will find blind people in every walk of life and at every social and economic level of American society

.”

Slide86

According to Pierce being part of the deaf culture

is analogous being part of the Hispanic culture in an

AngloAmerican

society

Are these cultures mutually exclusive?

Integration with

preservation: teach children

Spanish and

English

In the Deaf case, hearing enables integration and preservation as the hearing

can both

speak and sign

Slide87

The place of value judgements in distrivutive justice: All Lives Are of Equal Value

Related objection: All lives are equally valuable, to

say that one life is better

is

discrimination and failure to respect human dignity.

NB. Different from prescriptive equality:

that people

should all be treated with equal concern and respect, regardless of their quality of life or degree of well-being

.

(

cf. Dworkin, 1977; Singer, 2011).

Arises

from the value or dignity that all persons possess. But

to say that all persons possess equal value is not at all the same as to say that they all lead lives that are equally

good

.If nothing we did and nothing that happened to us could affect the quality of our life then

most action—including most morally and politically motivated action—would be pointless

.

Slide88

Imagine that John's life expectancy is 80. A condition affects him so that it is now reduced to 60. If Juice is given, the condition will be corrected and he will again live to 80. Juice should be given because it is better to live to 80 than 60 (assuming the life is good quality).

Now imagine Jane is born with a life expectancy of 60. If Elixir is given, she will live to 80. Again, Elixir should be given be because it is better to live to 80 rather than 60.This approach can be extended beyond length of life to qualities in life.

Slide89

Prescriptive EqualityEach

person ought to be given an equal chance to receive the life saving treatment, regardless of expected length or quality of life. Even though

their lives may differ in value

, they ought

to be treated equally.  

This goes against utilitarianism and health economics but does

show that egalitarianism is consistent with viewing lives as differing in well-being, or their prospects for well-being.

Slide90

CONCLUSION

When it comes to choosing to be disabled or non-disabled, the views of autonomous individuals

ought to be respected.

When

it comes

to embryos, fetuses and children

, we ought to choose to

avoid disability

not because it

guarantees

a better life but it

increases the chances of

having a better life, just as removing a disposition to short sight or asthma.

Slide91

Personal experiencesValue of others’ experiences – intersexAsthma and the best life

Parenting

Slide92

FeaturesMakes no reference to normality

whether or not a condition is normal or deviated from normality is not an intrinsic property of a person.illness would count as (or is best understood as) a disabilityWharmful character traits—perhaps having a weak will, excessive stubbornness, lack of confidence—would all count as disabilitiesW

92

Slide93

2. Has an intrinsic normative dimension

according to the everyday use, if something is a disability, then it is a misfortune to those who suffer from it, makes their life go worse, and gives reasons to correct it. DisabilityW achieves this through connection with well-being

93

Slide94

3. Relative to person and context

DisabilityW is relative to both persons and circumstances.being outspoken may make for political success in a liberal democracy but lead to death in a totalitarian regime.

atopic tendency which leads to asthma in the developed world protects against worm infestations in the undeveloped world.

deafness would be a positive advantage in an environment of extremely loud and distracting noise

everyday concept doesn’t have this relativity.

it not only mistakenly implies that deviation from the species norm is bad, but also seems to imply that they are bad in themselves, quite independently of context

disabilityW is, by contrast, context dependent

94

Slide95

Context Dependent internal and external factors often interact

wealthy and healthy person, blindness may not make a significant difference to well-being poor person can be made much worse by being blindbut, holding a person’s blindness constant, we can ask whether poverty would reduce or increase their well-being

95

Slide96

Context Dependent on our account, it often makes little sense to ask of some general condition, ‘Is this a disabilityW?’

we need to know what class of people is being referred to, and to predict what the likely context or environment is likely to be

96

Slide97

4. It’s ubiquitous

ne example of a disabilityW is asthma asthma makes breathing more difficult in certain environments commonly encountered in the developed world—dusty or smoky environments, or places with pets.

more difficult to enjoy the company of others or do physical activity if it is difficult to breathe

it is a consequence of our account of disability that in this and similar ways,

all of us

can be said to suffer from disabilitiesW

conditions inherent to our nature which reduce our well-being and make it more difficult to realise a good life.

lame foot, pig headedness and weakness of will are all disabilitiesW.

97

Slide98

Illness

illness is as a form of disabilityWextent to which a disease is a disability determines the extent to which an ill person should be treatedsome illnesses have so little impact on a person’s life that such ill people have very little claim to treatment, despite the fact that their biological functioning might deviate from the species-typical norm

98

Slide99

5. Degree or threshold or threshold-and-degree concept?

Degree conceptbut the everyday concept is both a threshold and a degree concept. light deviations from species norm, such as short-sightedness, don’t count as disabilities

only more significant deviations, such as very poor sight or blindness, meet this threshold

but once something counts as a disability, it’s often compared in seriousness to other disabilities

paralysis is said to be a more serious disability than deafness

99

Slide100

Degree conceptProblemappears absurd to describe someone with an IQ of 160 as disabled just because some condition prevents her from having an IQ of 180

but compare unpleasant experiences and suffering:suffering is not a different kind of experience just a matter of degreerelative scale: King Kong is small compared to T-Rex

100

Slide101

Disability and Disadvantagepeople who suffer from significant disabilityW may require special facilities or financial support

some people prefer to use the word ‘disadvantage’ to refer to mild forms of disabilityWcounter-intuitive to describe someone with less than perfect health or the intelligence of a genius as disabled in any way

DisabilityW

A stable intrinsic property of subject S that that leads to a

significant

reduction of S’s level of well-being in circumstances C

101

Slide102

Relation to Everyday Conceptwelfarist account preserves much of the evaluative dimension of the everyday concept, but drops its descriptive dimension

refers to instrumental, not intrinsic badness, and the badness is relative to person and circumstancelike the everyday concept, it refers to a stable physical or psychological condition, but there is no reference to either biological or statistical normalityno reference to the biological species of the subject. Only to their well-being

102

Slide103

Why Revise?inclusive in just the right way. whole genome analysis will show all of us disabled in some ways by our biology

not everyone disabled in the everyday sense would count as having disablityWmost people who count as normal have, to some degree, disabilitiesW. leaves out irrelevant reference to normality it makes salient the normative continuity between stronger forms of disabilityW and the ubiquitous lighter forms that everyone has

103

Slide104

Relation to Other Accounts1. DisabilitySNit deviates greatly from SN’s descriptive content

some think that this is too radical, too inclusive of things that, intuitively, don’t seem like disabilities at all.

response: DisabilityW as stating only a necessary condition for something’s counting as a disability.

some further condition must be met to get disability proper

104

Slide105

Hybrid Concept

DisabilityW+SN A stable intrinsic property of subject S that

deviates from the normal functioning of the species to which S belongs (i.e. a disabilitySN)

and

leads to a reduction of S’s level of well-being in circumstances C (i.e. a disabilityW)

Problem:

no very interesting connection between conditions (1) and (2)

not the fact that it deviates from a species norm that makes a property detrimental to well-being

105

Slide106

2. DisabilitySMuseful to narrow down disabilityW so that it refers only to the effect a condition has on well-being that we get when we

subtract the effect it has through social prejudice

DisabilityW-SM

A stable intrinsic property of subject S that tends to reduce S’s level of well-being in circumstances C,

excluding

the effect that this condition has on well-being that is due to prejudice against S by members of S’s society due to the deviation of this property from the normal functioning of the species to which S belongs

Race is not a disability

Natural vs Moral Evil

106

Slide107

One Final Account: Ability, Inability, DisabilityThe everyday notion of disability refers to a lack of ability

The blind cannot see, the deaf cannot hear, etc. If these conditions tend to reduce well-being, they do so by depriving those who suffer from them from certain abilities. tTheir lives don’t go as well as they could because there is a range of things that they can’t do.

Pain and disease are not disabilities, in this sense, but their effects can be disabling

Disabilitya

A stable intrinsic property of subject S that prevents S from

V

ing (in circumstances C)

107

Slide108

InabilityDisabilitya is definition of inabilitybut very few of these ‘inabilities’ matter.

being unable to wiggle one’s ears isn’t a disability. we could define a notion of

disabilityW+a

which would refer to stable condition that tends to reduce well-being

and

does so because its existence prevents the person from having a range of abilities

108

Slide109

Problems if lacking certain abilities or modes of ‘functioning’ was all there was to well-being, then disabilityW+a would simply follow from disabilityW plus this substantive view about well-being

but as this is an extremely implausible viewthis view that leaves no space, for example, for the intrinsic value of pain or knowledge or longevity.

109

Slide110

Problemsdepression counts as a disabilityW not only because depressed people may find it harder to engage in various activities but also because depressed people are disposed to

feel badfor those who are addicted to alcohol or who cannot control their urge to eat, it may be a benefit to take substances or have surgery that

restricts their ability

to act on these harmful urges

110

Slide111

DisabilityW or Disabilitya+W?DisabilityW+a is too narrow

fails to single out any interesting normative category lack of an ability is likely to affect one’s well-being in a vast number of ways, through different causal routes no good reason, except the desire not to offend semantic intuitions, to narrow down the welfarist account in this way

111

Slide112

ApplicationCase 1 Deafness – deafness is a disability. Except where established deaf projects that give meaning to life

Case 2. Dwarfism – probablyCase 3. Body Integrity Identity disorder – surgery is an enhancementCase 4. Ashley Case – Ashley Treatment is an enhancement

Case 5 Colour Blindness – severe disability

Case 6. IQ reduction – small disability

Case 7. Cynthia

not a disability

like a discriminated trait – result of voluntary deployment

112

Slide113

Conclusion

If we want the welfarist account to most closely overlap the existing concept, we could formulate it to include the threshold limit, the relation to lack of ability, and the subtraction of the effect on well-being due to prejudice, giving us DisabilityW+a-DT

A stable physical or psychological property of subject S that:

leads to a

significant

reduction in S’s level of well-being in circumstances C,

where that is achieved

by

making it impossible or hard for S to

V

, and

where the effect on well-being in question

excludes

the effect that this condition has that is due to prejudice against S by members of S’s society

113

Slide114

Conclusion

Since the constraint on ability and degree of harm do not mark genuine normative distinctions, our own preference is for a broader, more inclusive notion: DisabilityW-DT

A stable physical or psychological property of subject S that tends to reduce S’s level of well-being in circumstances C,

excluding

the effect that this condition has on well-being that is due to prejudice against S by members of S’s society due to the deviation of this property from the normal functioning of the species to which S belongs

114

Slide115

Change Society, Not PeopleWe should alter social arrangements to promote well-being, not biologically alter people

Improve society not enhance people to increase well-beingRelated: “disability is socially constructed”Response:“Biopsychosocial fit”We should consider all modifications, and choose the modification, or combination, which is bestSkin colour

Social modification and discrimination

Biological modification and environmental risk

115

Slide116

Social Not Biological Enhancement

Good Reasons to Prefer Social Rather Than Biological InterventionIf it is safer

If it is more likely to be successful

If justice requires it (based on the limitations of resources)

If there are benefits to others or less harm

If it is identity preserving

BUT VICE VERSA

116

Slide117

Social Construction of Disabilitydisability is “socially constructed” when there are good reasons to prefer social intervention than direct biological or psychological intervention

Biopsychosocial construction of disability:Must consider reasons for and against intervention at all levels:SocialPsychological Biological

whether the modification will harm others or create or exacerbate injustice.

117

Slide118

Conclusion

There are 4 ways to promote human well-being. Change:

Natural environment

Social environment

Psychology

Biology

118