1 Disability and Difference Professor Julian

slide1. 1 Disability and Difference

Professor Julian Savulescu<br>
slide2. Case 1. The Famous Deaf Lesbians In 2001, Sharon Duchesneau and Candy McCullough, a deaf lesbian couple had their second child Gauvin
The 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<br>
slide3. Case 1 They argued that:
deafness is an identity, not a medical affliction that needs to be fixed
desire to have a deaf child is a natural outcome of the pride and self-acceptance many people have of being deaf
hearing 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<br>
slide4. Case 2. Cochlear implants Jane and John are members of the Deaf Community
Their 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 disability
Henry will be a much loved member of their community and able to communicate with sign language<br>
slide5. Case 3. Dwarfism two achondroplastic dwarfs request PGD to select an embryo with dwarfism
they 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<br>
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<br>
slide7. Case 4 Ashley Case Ashley, 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<br>
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<br>
slide9. Species Norm Account of Disability DisabilitySN
A stable intrinsic property of subject S that deviates from the normal functioning of the species to which S belongs 9<br>
slide10. Problems Need to specify “subfunctioning”
Descriptive but not evaluative concept, but disability is part evaluative
we 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<br>
slide11. Evaluative DisabilitySN DisabilitySN+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<br>
slide12. Social Model Reject 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<br>
slide13. Social Model of Disability DisabilitySM
A stable intrinsic property of subject S which
deviates 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<br>
slide14. Wider Concept Discriminated 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<br>
slide15. Social Model DisabilitySM singles out a genuine form of harm
a harm for which many people are morally responsible
the question is whether this concept captures everything that might be said about the evaluative connection between disability and well-being 15<br>
slide16. Welfarist Account DisabilityW
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<br>
slide17. Prejudice unjust attitudes are bad because of their effects and bad in themselves
thus we should give priority to correcting them, rather than disability they cause
But are all reductions in well-being caused by unjust attitudes? 17<br>
slide18. Realistic Conditions cannot be that prejudice exists just in case there is a conceivable possible world in which a putative disability has no effect on well-being
paralysis may not make a difference to well-being if we all possess powers of levitation and telekinesis
being 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<br>
slide19. Example of Prejudice Anita 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<br>
slide20. Distributive Justice and Prejudice BUT 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<br>
slide21. Distributive Justice In 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<br>
slide22. Distributive Justice some failures to socially correct the harmful effects of some biological or social trait are JUST
the 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 conflation
A better label would be the ‘Social Injustice Model’. 22<br>
slide23. Barnes’ Social Model Elizabeth Barnes, “Valuing Disability, Causing Disability,” Ethics, 125 (2014): 88-113.<br>
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.<br>
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.<br>
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)<br>
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<br>
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.<br>
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<br>
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<br>
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.<br>
slide32. What the Detrimental (Bad)Difference ViewDoes NOT say: That disability is intrinsically bad, or necessarily a great harm
That “disability is by itself something that makes you worse off” (Barnes, p. 89)
That disability always (or even nearly always) leads to reduction in well-being, independently from one’s contingent physical and social environment.<br>
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.<br>
slide34. The Value of Options Assumption: 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.<br>
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.”<br>
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.<br>
slide37. Unique Benefits Examples Deafness- commonly cited benefits include:
More intense relationships from visual recognition
Participation 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.<br>
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.<br>
slide39. Prejudice Key difference between Mere Difference and Detrimental Difference view is whether prejudice and injustice are the only cause of loss of options associated with disability
Agree 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”.<br>
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.<br>
slide41. Value, Changes and Consent Impermissable: 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.<br>
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.<br>
slide43. Cases Where Consent and Transtion Costs are Irrelevant Barnes 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<br>
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.<br>
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.<br>
slide46. Barnes Concedes 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.<br>
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<br>
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<br>
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<br>
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<br>
slide51. Wellbeing<br>
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”<br>
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.<br>
slide54. Barnes: “That’s not at all to say that what disability activists say about disability is
sacrosanct 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.”<br>
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.”<br>
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<br>
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.”<br>
slide58. Problems for Subjectivity/Relativity of Value Does not track intuitions about value
Freedom/Opportunity
Objective Goods<br>
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).”<br>
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.<br>
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.
People 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)<br>
slide62. 3. Freedom/Opportunity Same happiness/satisfaction but different opportunities/capacities (Sen - capabilities)
Monolingual vs Bilingual
Sign vs Hearing =Sign<br>
slide63. Wellbeing HAPPINESS DESIRES OBJECTIVE GOODS Social relationships
Love
Family/ children
Achievements
Developing talents/ abilities
Moral goodness
Creativity
Physicality
Sex<br>
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)<br>
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.<br>
slide66. Objective List Theorists Objective 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.<br>
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<br>
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.<br>
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).<br>
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.)<br>
slide71. Context and Value Impulse 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).<br>
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,<br>
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.<br>
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 others.
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.<br>
slide75. Imprecision A 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)<br>
slide76. Bach and Einstien 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) 
Bach and Einstein also clearly had different genomes. Perhaps one of these genomes was better.
More likely that their genomes cannot be compared precisely.<br>
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.<br>
slide78. Which Life is Better May 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.<br>
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)<br>
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.<br>
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.<br>
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.<br>
slide83. Challenge, Struggle and the Best Life Objection: some impediments are necessary for achieving the best life. Overcoming obstacles makes us better people.
Response: Adults 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.<br>
slide84. Intersubjectivity of value We are social beings and not all of the social value of our existence is a matter of justice<br>
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.”<br>
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<br>
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.<br>
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.<br>
slide89. Prescriptive Equality Each 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.<br>
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.<br>
slide91. Personal experiences Value of others’ experiences – intersex
Asthma and the best life
Parenting<br>
slide92. Features Makes 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 disabilityW
harmful character traits—perhaps having a weak will, excessive stubbornness, lack of confidence—would all count as disabilitiesW 92<br>
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<br>
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<br>
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 blind
but, holding a person’s blindness constant, we can ask whether poverty would reduce or increase their well-being 95<br>
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<br>
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<br>
slide98. Illness illness is as a form of disabilityW
extent to which a disease is a disability determines the extent to which an ill person should be treated
some 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<br>
slide99. 5. Degree or threshold or threshold-and-degree concept? Degree concept
but 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<br>
slide100. Degree concept Problem
appears 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 degree
relative scale: King Kong is small compared to T-Rex 100<br>
slide101. Disability and Disadvantage people 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 disabilityW
counter-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<br>
slide102. Relation to Everyday Concept welfarist 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 circumstance
like the everyday concept, it refers to a stable physical or psychological condition, but there is no reference to either biological or statistical normality
no reference to the biological species of the subject. Only to their well-being 102<br>
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 disablityW
most 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<br>
slide104. Relation to Other Accounts 1. DisabilitySN
it 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<br>
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<br>
slide106. 2. DisabilitySM useful 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<br>
slide107. One Final Account: Ability, Inability, Disability The 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 Ving (in circumstances C) 107<br>
slide108. Inability Disabilitya is definition of inability
but 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<br>
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 view
this view that leaves no space, for example, for the intrinsic value of pain or knowledge or longevity. 109<br>
slide110. Problems depression 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 bad
for 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<br>
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<br>
slide112. Application Case 1 Deafness – deafness is a disability. Except where established deaf projects that give meaning to life
Case 2. Dwarfism – probably
Case 3. Body Integrity Identity disorder – surgery is an enhancement
Case 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<br>
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<br>
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<br>
slide115. Change Society, Not People We should alter social arrangements to promote well-being, not biologically alter people
Improve society not enhance people to increase well-being
Related: “disability is socially constructed”
Response:
“Biopsychosocial fit”
We should consider all modifications, and choose the modification, or combination, which is best
Skin colour
Social modification and discrimination
Biological modification and environmental risk 115<br>
slide116. Social Not Biological Enhancement Good Reasons to Prefer Social Rather Than Biological Intervention
If 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<br>
slide117. Social Construction of Disability disability 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:
Social
Psychological
Biological

whether the modification will harm others or create or exacerbate injustice. 117<br>
slide118. Conclusion There are 4 ways to promote human well-being. Change:

Natural environment
Social environment
Psychology
Biology 118<br>