Biathirr ISSN 0269-9702

Volmt 6 N u m b 3 1992

MEASURING QUALITY OF LIFE IN

THEORY AND IN PRACTICE:
A DIALOGUE BETWEEN
PHILOSOPHICAL AND
PSYCHOLOGICAL APPROACHES

PAULA BODDINGTON & TESSA PODPADEC

Measuring quality of life is of concern to both philosophers and

psychologists, yet the two disciplines typically approach the question
in very different ways, ways so diverse that it may look, as if they
are engaged in such disparate activities that no dialogue between them
is possible. In this paper we aim to construct the beginnings of a
dialogue between the two disciplines which will show how they could
serve each other and yet also show how, from the dialogue, difficult
and previously unconsidered issues emerge for both sides.
The most fruitful way of looking at these differences between the
two disciplines and perhaps the most fruitful way of beginning a
dialogue between them is in examining the issue of why quality of
life is being measured. Thus, this is the question on which we primarily
focus, rather than giving a detailed analysis of how quality of life might
be measured.
We are interested in how measuring quality of life stems from and
leads to a differential valuing of human lives in the work of many
philosophers, and how, in stark cbntrast, measuring quality of life
is a pragmatic concern for psychologists and other social scientists
which stems from an equal valuation of different human lives. We
show how practitioners in the field are badly in need of a theoretical
framework. One major question which then emerges is whether it
is possible to have this framework and yet retain commitment to equal
valuation of different human lives.
We are particularly focusing on learning difficulties as an illustra-
tion of the argument.
202 PAULA BODDINGTON & TESSA PODPADEC

WHAT IS T H E PURPOSE OF MEASUREMENT?

An examination of the concerns of psychologists and philosophers
regarding people with learning difficulties and questions of quality
of life, or value of life, shows that the two disciplines often seem to
be at completely cross purposes.
However, if the question of why the two disciplines are interested
in quality of life and its measurement is asked, then it is possible
to begin to see the reasons behind this divergence.
In general, philosophers are interested in what grounds the value
of life, what it is that gives life the value it has, and are interested
in looking at broad questions about choices between lives, and choices
between life and death. For example, questions are considered con-
cerning what sorts of people should be brought into the world, what
priorities should be set concerning who should receive limited
resources, and under what circumstances might it be permissible to
allow a human being to die, or actively to help them on their way.
Especially as regards questions about choices between lives, some
philosophers are interested in differences between different lives in
terms of value and may link this to quality of life: as a rough
generalisation, the higher the quality of life, the greater the value.
For example, Helga Kuhse and Peter Singer argue that medical
resources are more effectively used on those who are judged to have
higher expectation of benefitting from life, that is, those who are
expected to have a higher measure of quality of life.
Down's syndrome . . . means a reduced potential for a life with
the unique features which are commonly and reasonably regarded
as giving special value to human lives . . . . The possible benefits
of successful surgery in the case of a Down's syndrome child are
therefore, in terms of these widely accepted values, less than the
possible benefits of similar surgery in a normal child.'
A higher valuation, in terms of expenditure of valuable resources,
and in terms of what a child is thought to benefit from surgery, thus
follows higher measurement of quality.
Of course, there is a wide body of opinion amongst philosophers,
and we want to recognise this, but in this paper we are most con-
cerned to consider those whose approach diverges most widely from
the typical approach of psychologists and other practitioners. We go
on to argue that despite this divergence, there can be a useful dialogue
between those with dissimilar approaches: indeed, there should be

'Kuhse, H . & Singer, P. Should the Baby Live? The Pmblm of Handicapped Injants,
Oxford, Oxford University Press, 1985, p. 143.
 MEASURING QUALITY OF LIFE 203

such a dialogue. The following examples show how some moral

philosophers typically differentially value different classes of people,
in ways which can be connected to abilities that they are judged to
have or to lack. (In turn, possession or lack of various abilities may
be considered a crucial component of the quality of one’s life.)
To respect a person as an end is to value or cherish him for what
he is - and that is a possessor of a rational will, where ‘rational
will’ refers to the ability to be self-determining and rule following
with all that these imply. . . . This is not to exclude from moral
attitudes creatures which have personality only in a minimal sense,
once we understand what it is to have respect for a person in the
full sense . . . we can then extend this attitude in a suitably modified
form to whatever is thought to have traces of personality.‘
Glover makes a claim that many people working with those with
learning difficulties would find staggering in that he is prepared to
consider the possibility that some lives are worth less than others:
The idea of dividing people’s lives into ones that are worth living
and ones that are not is likely to seem both presumptuous and
dangerous. As well as seeming to indicate an arrogant willingness
to pass godlike judgements on other people’s lives, it may remind
people of the Nazi policy of killing patients in mental hospitals.
But there is really nothing godlike in such a judgement. It is not
a moral judgement we are making, if we think that someone’s
life is so empty and unhappy as to be not worth living. It results
from an attempt (obviously an extremely fallible one) to see his
life from his own point of view and to see what he gets out of it.
It must also be stressed that no suggestion is being made that it
automatically becomes right to kill people whose lives we think
are not worth living. It is only being argued that, if someone’s
life is worth living, this is one reason why it is directly wrong to
kill him.3
This quotation however serves to illustrate the sort of approach
taken, and the kinds of questions considered, by various contemporary
moral philosophers. Note, of course, that a reason given why a life
should not be taken - that is, why it is of some value - is that it
is worth living - that is, has some acceptable level of quality.
John Harris usefully provides an express formulation of what his

* Downie, R.S.& Telfer, E. Respectfor Persons, London, Allen and Unwin, 1969,
p.37.
Glover, J. Causing Death and SavinE Lives, Harmondsworth, Penguin, 1977,
pp. 52 - 53.
204 PAULA BODDINGTON & TESSA PODPADEC

account of value of life is designed to do. These include:

2) To have an account of the point at which, and the reasons why,
the embryo or any live human tissue becomes valuable.
3) To recognise when and why human beings cease to be valuable
or become less valuable than others. (our italic^.)^ .
Harris’s agenda of ethical concerns is typical of a number of
philosophers currently working in the field of applied ethics. Nowhere
in this list does Harris even mention when discussing the value of
life how quality of life may be improved, which is as we shall see,
the key question for psychologists.
We do not suggest that value of life and quality of life should be
conflated, but there is often a link between them. One of the most
important philosophical questions to consider is how exactly the
relationship between quality of life and value of life should be con-
ceived and this is an issue we shall discuss briefly below.
Psychologists have a more pragmatic approach to quality of life,
which arises from the need to determine whether the quality of life
of people with learning difficulties has improved on moving from
large institutions and hospitals to community based care. As a result
they are broadly interested in finding out about how quality of life
of particular individuals may be improved. In contrast to some
philosophers, discussed above, psychologists separate questions about
the value of a life from those about the quality of a life. They simply
assume that any person’s life has got value, and that every person’s
life is of equal value. Day (1988) for example outlines:
. . . a vision of the future where people who are handicapped and
disadvantaged are not cast out from ordinary society but are able
to remain within that society as valued, contributing member^.^
And many other workers in this field are:
. . . guided by the underlying principle that people with learning
difficulties have the same human value and the same human rights
as any other citizen.6
For psychologists then, there is a two-fold purpose in measuring
quality of life: firstly to improve the quality of life of particular indivi-
duals in particular settings and secondly the more policy based issue
of which service provisions would lead to the best quality of life for
the client group in question.

‘ Harris, J. ’i’he Value of Life: An Introduction to Biomedical Ethics, London,

Routledge and Kegan Paul, 1985, p.27.
Day, P.R., “Not an ordinary life”, Mental Handicap, 1988, 16, 4-7, p.4.
Central Nottinghamshire Health Authority Declaration of Rights of Users o j
Facilitiesfor People with Learning DzfFculties, 1991, p. 1 .
 MEASURING QUALITY OF LIFE 205

Psychologists work to improve quality, hence are interested in

measuring quality, because they assume value. Philosophers very
often want to measure quality because they don’t assume value, and
reaching a certain quality will ground value, or because measuring
quality may help to decide on questions of choice such as who should
be given medical treatment. Where such choice is between people,
and is not made on purely medical grounds, it is hard to escape the
conclusion that the person who receives the treatment is more highly
valued. Low quality of life for psychologists is seen as a problem which
the service has to solve. For some moral philosophers, it could be
said that low quality of life is potentially a problem for the person
who suffers from it, in that resources, and even life itself, may be
denied them.7 Here, the philosophers under consideration seem to
follow some interpretation of the text of Matthew 13:12:
For whosoever hath, to him shall be given, and he shall have more
abundance: but whosoever hath not, from him shall be taken away
even that he hath.
In summary, two important features of some philosophical work
that we need here to consider are the link between quality of life and
value of life and the making of inter-personal comparisons. In contrast,
psychologists sever the link between quality and value of life and tend
to make intra-personal rather than inter-personal comparisons.

WHAT SHOULD BE LOOKED AT WHEN MEASURING

QUALITY OF LIFE?
In the previous section we have explored the different reasons
philosophers and psychologists have for wanting to measure quality
of life. As we shall see in this section, this has led to different
conceptualisations of what should be in any measure of the quality
of life.
As stated above, psychologists are chiefly concerned with improv-
ing the quality of life for individuals. As such their measures tend
to include practically based, specific items which could fairly easily
be improved, rather than more abstract issues such as how happy
a person considers themselves to be.
In a comprehensive review of the way in which quality of life
measures have actually been used, Schalock (1988)* identified three

For example, Kuhse & Singer op. cit. and Rachels,J . The End oflijC, Oxford,
Oxford University Press, 1986.
Schalock, R.L., “The concept of quality of life in community-based mental
retardation programs”, I s m s in 5)txia.l Eduuztwn and Rclurbilitiation, 5 , 1988, 5-32.
206 PAULA BODDINGTON & TESSA PODPADEC

overwhelmingly important aspects of quality of life:

1) Environmental Control: ranging from control one has over daily
schedule, meal planning, shopping, home decorations, money,
appointments, pets, hobbies, to privacy and religion.
2) Community Involvement: work, recreation, education.
3) Social Relations: neighbours, people you live with, friends, family.
Other studies have also pointed to the importance of personal
development, that is, increasing confidence, assertion/self-esteem,
development of new skills in any assessment of quality of life.g
In the field of learning difficulties consideration of quality of life
has largely revolved around five ‘accomplishments’ outlined by
O’Brien (1987).” Here it is thought that in order to have a good
quality of life one needs: to be integrated into the community; to
form valued relationships; to make choices; to increase one’s personal
competencies; to command respect from valued members of the com-
munity. From these five accomplishments, a plethora of quality of
life measures have been devised.
Emphasis on the practical side has led to a proliferation of measures,
ranging from the questionnaire style measures to more innovatory
approaches such as Atkinson’s thematic interviewing” or
Wilkinson’s ‘Being There’ methodology. In Wilkinson’s work the
quality of life of a group of men with severe learning difficulties was
explored. .Because of their profound communication difficulties it was
not possible to ask the men directly about their quality of life, so
Wilkinson spent several months attempting to get as clear a picture
as possible of the men’s world, in particular what they seemed satisfied
with and what caused them dissatisfaction and frustration.
Psychologists have, on the whole, steered clear of tackling the theo-
retical issues around the question of quality of life, recognising that

See for example, Atkinson, D. “Moving from hospital to the community: fac-
tors influencing the life styles of people with mental handicaps”, Mental Handicap,
16, 1988,8- 11 and O’Brien, J. “A guide to personal futures planning”, in Bellamy,
G.T. & Wilcox, B. (Eds.) A Comprehensive Guide to the Activities Catalogue: An Alternative
Curriculumfor Youth and Adults with Severe Disabilities, Baltimore, Paul Brookes, 1987.
lo O’Brien, op. cit.
‘ I For example, Atkinson, D. “Research interviews with people with mental
handicaps”, Mental Handicap Research, 1(1), 1988, 75-90; Atkinson, D. “With time
to spare: the leisure pursuits of people with mental handicap”, Mental Handicap,
13, 1985, 139-140; Atkinson, D. & Ward, L. (1987) “Friends and neighbours:
relationships and opportunitiesin the community for people with a mental handicap”,
in Malin, N. (Ed.) Reassessing Communig Care, London, Croom Helm, 1987.
Wilkinson, J . “ ‘Being there’: evaluating life quality from feelings and daily
experience”, in Brechin, A. & Walmsley, J. (Eds.) Making Connections: Refletins on
the Lives and E x e c c s ofPeqbrC with Laming h z n r l i i e s , London, Hodder & Stoughton
in association with The Open University, 1989.
 MEASURING QUALITY OF LIFE 207

it is a difficult and complex issue. Typically, Landesman recognises

. . . that the process of defining qwlity of lge and personal l f e satis-
faction is likely to be fraught with difficulties and disagreements.
(italics
As a result, there is general agreement that quality of life is hard
to define and even harder to measure. l4 Instead workers in this field
have focused on developing and refining measures and methodologies.
So, for example, it is now generally accepted that if one is using
questionnaire-type measurements of quality of life that there are three
types of question which should be asked:
1) Relevance: the value that a given individual puts on a particular
element of quality of life
2) Frequency: level of engagement the person has with that element
3) Satisfaction: whether the level of engagement is acceptable.l 5
Importantly, questions of theory are generally overtaken by
discussion of appropriate methodologies. It is operationalising quality
of life that is seen as important, rather than working out definitions
in any detail.
Philosophical accounts of what should be included in accounts of
good lives, of what features make for quality in life, are extremely
diverse. For instance, Parfit delineates three types of theory of ‘what
makes someone’s life go best’, theories that he considers to be theories
of self-interest: hedonistic theories, desire-fulfilment theories, and
‘objective list’ theories, those which claim that certain things just
are objectively good for people and so should form a part of any
account of a good life.I6 Even Parfit’s account is arguably
incomplete. Here we shall look briefly at two different accounts, chosen
because of their diversity, and also because, as we hope to show,

’’ Landesman, S. “Quality of Life and Personal Life Satisfaction: Definition

and Measurement Issues”, Menial Retarahtion, 24, 1986, 141- 143, p. 142.
I’ See, for example, James, J., Howell, H . & Abbott, K . “Quality Matters,
1. ‘Slicing the apple’: maintaining and improving quality of mental handicap
services”, Mental Handicap, 17, 1989, 156-159; Saxby, H . , Felce, D., Harman,
M. & Repp, A. “The maintenance of client activity and staff-client interaction in
small community houses for severely and profoundly mentally handicapped adults:
a two year follow-up”, Behavioral Psychotherapy, 16, 1988, 189-206; Stanley, B. &
Roy, A., “Evaluating the quality of life of people with mental handicaps: a social
validation study”, Menial Handicap Research, 1:2, 1988, 197-210.
Stanley and Roy, op. cit., pp.200-203.
l6 Parfit, D. Reasons and Persons, Oxford, Oxford University Press, 1986.
Appendix I, pp. 493 - 502.
208 PAULA BODDINGTON & TESSA PODPADEC

they could both benefit from an appreciation of the work of

psychology. l7
It should be said that in the main, philosophical work does not
produce such precise and detailed accounts of the elements of quality
of life as does psychological work, but rather tends to focus on
providing an overarching theory, out of which particular elements
may drop, but which may not directly spell out all of those elements.
In A Theory ofJurtice, Rawls sets out his account of a definition
of good for plans of life.’’ This could be seen as tackling only one
aspect of quality of life in that it focuses on the internal aspect of
how a person attempts to form their life, and leaves out external factors
such as health and housing, except obliquely insofar as they affect
the success of plans of life. Nonetheless, Rawls represents one typically
philosophical approach in adopting Royce’s thought that ‘a person
may be regarded as a human life lived according to a plan’,’g and
in claiming that, with certain qualifications, ‘we can think of a person
being happy when he is in the way of a successll execution (more
or less) of a rational plan of life drawn up under (more or less)
favourable conditions, and he is reasonably confident that his plan
will be carried through’.m
As part of an attempt to describe more specifically what kinds of
ends these plans are likely to seek after, Rawls describes a general
principle of human motivation, dubbed by him the Aristotelian
Principle, which states that ‘other things being equal, human beings
enjoy the exercise of their realised capacities (their innate or trained
abilities), and this enjoyment increases the more the capacity is
realised, or the greater its complexity’“ He also adds ‘We need not
explain here why the Aristotelian Principle is true’,** going on to
speculate about why it is presumably true, and states ‘the general
facts about human needs and abilities are perhaps clear enough and
I shall assume that common sense knowledge suffices for our purposes
here’.23
Important points to note here are, firstly, that Rawls is talking
here of a life that is planned, at least minimally, as being the model

l7 Rawls’ account could perhaps be argued to provide the beginnings of a

reasonable basis for an account of the theory underlying much psychological work
on quality of life, but that is perhaps the subject of another paper.
’* Rawls, J. (1972) A 771~09 OfJutiU, Oxford, Oxford University Press, 1972.
Ibid., p.408.
2o Ibid.,p.409.
21 Ibid.,p.426.
22 Ibid., p.426.
23 Ibid., p.425.
 MEASURING QUALITY OF LIFE 209

of a satisfactory human life. Secondly, he takes a feature of human

beings, important for his description of what a good life would be,
that they strive after ever more complex goals based on the exercise
of talents, and thirdly, he makes such a claim without any researched
empirical backing of the kind that a psychologist would recognise.
The second philosophical example we examine which looks at
questions of quality of life is that of Kuhse and Singer’s book Should
the Baby L ~ v c . ~ ‘
Here, the authors consider the case of how handi-
capped newborns should be treated, and, rejecting the idea that all
human lives are of equal value, propose that the quality or expected
quality of a baby’s life should be taken into account. However,
although various fairly predictable aspects of quality of life are at
different times referred to in the text, there is no overall or systematic
account of what we need to look for in assessing quality. They talk
about being ‘sufficiently free from pain’, having a life that is
‘sufficiently worthwhile’, a life ‘that it will find ~atisfying’,~~ and
mention as factors detracting from a good quality of life low intel-
ligence and physical handicaps and problems such as incontinence,
blindness, fits, and mobility problems.26The authors often focus on
questions of comparison between ‘normal’ life and fairly severe
handicaps, such as spina bifida may be, and Down’s syndrome, where
the reader may well l h i that it is obvious that life with the handicap
is of a lower quality than life without. Even if this assumption is
justified, it perhaps has the unfortunate result that the troubled ques-
tion of what exactly makes for a life of acceptable quality is not directly
or rigorously addressed. For instance, we are invited to compare the
quality of a normal life with the quality of life in a coma,27and this
does not lead us to worry about spelling out the details of any worth-
while, non-comatose life: more or less anything would do, except
perhaps mental or physical agony, compared to a coma. Not a great
deal of information is given on what precisely is involved in having
conditions such as Down’s syndrome and spina bifida, two major
conditions that the authors frequently discuss. This means that there
are limits placed on Kuhse and Singer’s proposals and their practical
application. More worryingly, there may be doubt about whether
their ‘chatty’ sort of account of quality of life is really giving a
suficiently adequate picture to support their broad conclusions (which
follow from claims such as that someone with Down’s syndrome has
a reduced potential for a worthwhile life). Are we perhaps simply

Kuhse and Singer, op, tit..

2J Ibid., all p.189.
26 Ibid., p.61.
27 Ibid., p.90.
210 PAULA BODDINGTON & TESSA PODPADEC

following unexamined received wisdom here? The difference from

the detailed inventories of much psychological work is striking.
The differences outlined can be explained in terms of the psycho-
logists overwhelming concern with empirical matters at the expense
of examining theoretical issues, with exactly the reverse being so for
the philosophers. Nonetheless, and importantly, we have seen in both
the above two examples that philosophers are making claims with
an empirical content: Rawls’ Aristotelian Principle of motivation,
and Kuhse and Singer’s reference to the concrete reality of desirable
or undesirable features of life, to the question of what life someone
‘will find satisfying’, together with reference to the nature of specific
conditions.
It might be tempting to suggest that philosophers and psycholo-
gists are talking different languages, and engaged in totally diverse
activities.
The question then presents itself whether there is any possibility
or even any point in such philosophers and psychologists com-
municating with each other? Or are they engaged in completely
different activities? One response might be to suggest that since psy-
chologists and philosophers have just different tasks in hand, there
is no reason to expect any congruence between their work or any
fruitful dialogue between them. In reply to this, we go on to show
some specific ways in which a dialogue may be of great value.

WHAT CAN PHILOSOPHERS LEARN FROM T H E

PSYCHOLOGISTS?
One important point to note initially is that many accounts of the
value of life that have been produced could be argued to be biased
towards those who have competence in the intellectual field, and biased
against people with learning difficulties. For instance, the value of
life is often explained in terms of personhood or something like it,
most famously by Tooley in his discussions of abortion and
infanticide.28These accounts of personhood in turn generally revolve
around the idea of a rational, autonomous, self conscious individual,
and very often language is seen as a pre-requisite. Therefore those
who are seen as having limited rationality and limited or absent
language may be devalued. As we shall shortly show, there are also
problems in accounts or quality of life for those with communication
or intellectual difficulties.
One response may be that such points show up simple disagreement
about how different human beings should be valued. But before this

28 Tooley, M . Abortion and Infanticide, London, Oxford University Press, 1983.

 MEASURING QUALITY OF LIFE 21 1

conclusion is reached, it should be considered that the work of various

psychologists can suggest that some of the philosophers’ conclusions
have been drawn too hastily. We go on to try to demonstrate this point.
Because of their practical remit, psychologists can offer a more
thoroughly grounded account of some of the features of human beings
or persons which concern philosophers. By assuming value of lives
and by their quest to improve quality of whatever life a person has,
psychologists have been forced to look for whatever could be of value
in a life and hence have come up with a wider menu of quality in
life than many philosophers, who can be broadly argued, very often,
to be still entrenched in notions of ‘the rational man’ as a model
of human nature and as a ground for value and quality of life.
As was shown above (p.210) philosophers, although mainly
interested in providing a theoretical account, do very often make
empirical claims, claims which often lack any adequate grounding
in empirical research. The psychologists’operationalisation of quality
of life and attention to the detail of what it might involve, could help
philosophers to spell out a picture of quality of life that encompassed
wisdom gained from an examination of many different possibilities
of living a human life, hence add to a theoretically grounded model
practical insight. In the two instances studied above, Rawls’ claim
that something like the Aristotelian Principle seems from his
observations to be true would fail him a first year psychology exam.
Why not use psychological methodology, expertise and results to
substantiate such a claim? The second example examined of the work
of Kuhse and Singer also shows how important conclusion are drawn
from insubstantial empirical claims about what kind of life a person
with a particular condition is likely to have, with little or no attempt
to examine in detail the exact nature of the conditions or any indivi-
dual variation, no attempt to draw on any specific data about the
quality of people’s lives. Neither does this appear to be based on any
claim that such substantiation is unnecessary. We can only conclude
that there are flaws in Kuhse and Singer’s case. A very simple point
to make is that psychologists and other practitioners have looked in
much greater detail at the nature of the conditions Kuhse and Singer
discuss.
The following will illustrate some of the concrete benefits that
psychological work can offer. For example, people working with
children with severe learning difficulties often use sensory stimula-
tion as being one available route to introduce some quality into their
lives. Most children will get stimulation from working out a puzzle
in the course of play. One source of reward comes from getting the
answer right and the sense of satisfaction that this brings. Children
who will rarely, or never get the answer right will miss out on this
212 PAULA BODDINGTON & TESSA PODPADEC

reward, with consequent frustration and dissatisfaction. By providing

these children with games where rewards such as a light flashing can be
attained simply by pressing a button, and so forth, it is believed that
the quality of their lives may be improved to contain something which
other children take for granted - that playing is a rewarding activity.
Incidentally, this raises a question of whether such simple stimulus
rewards should be seen as a component in the quality of life.
Psychologists here can be seen to be separating any reward from the
notion of rational activity, and this may be anathema to Aristotelians
and others, including any at all tempted by the notion that Utili-
tarianism is a ‘pig’ philosophy, ignoring the higher levels of human
activity in its search after mere pleasure or happiness. However, such
an approach, to value simple reward for its own pleasures, and to
recognise the significance of this, especially perhaps for some people,
could for instance be the basis of a supplement or limit to Rawls’
Aristotelian Principle of motivation. Quite a different account of what
makes for a good or successful life may then be produced.
A further area where psychologists could have a lot to offer is in
the field of communication difficulties. For some philosopher^,^^
people without language just aren’t persons and so important
conclusions about the value of their lives immediately follow. Even
philosophers who don’t take such an extreme view might tend to think
that ‘we’ can answer questions for this group, in particular, in making
judgements about the quality of different lives. Mill’s ‘competent
judges’, allegedly having the competence to decide, on behalf of others,
which pleasures are the best3’, have attracted much criticism but
subtly appear in many philosophical guises. For instance, we have
just seen how Kuhse and Singer, to take just one example, make
judgements about the quality of the lives of babies born with certain
conditions. (If it just seems obvious that of course anyone working
on such an issue has no choice but to make such judgements on behalf
of people falling into certain groups, the reader is asked to read on,
pp.2 13 below.) In particular, many philosophers ignore the possibility
of non-verbal systems of communication in relation to issues such
as personhood and the resulting conclusions about value of life, in
contrast to many psychologists and especially perhaps those having
day-to-day contact with people without verbal skills. Moreover, if
the possibility of non-verbal systems of communication is ignored,
important routes to measure a person’s quality of life may be missed.
Again, the difference between the two disciplines may be

29 See, for example, Dennett, D. “Conditions of Personhood”, in his B r u i n s t m ,

Brighton, Manchester Press Ltd, 1978, pp.267 -285.
30 Mill, J.S. Utilitarianism, 4th Edition, London, 1871.
 MEASURING QUALITY OF LIFE 213

explained pragmatically: if you h u e to interact with people, you look

for whatever channels of communication you can. In this instance,
if not in all, we can make the obvious corny observation that
philosophy is too much of an armchair activity.
Psychologists with their unconditional value on all human life see
lack of communication as a challenge to be tackled rather than an
answer to a question. Recent work in psychology sees the problem
as being one of relationship. Difficulties in communication are seen
as being as much those of hearing as those of speaking. It is especially
relevant to our purpose here to examine the unique People First Report
Service Evaluation by People with Learning Difficulties3’. Here, research
on quality of life for people with learning difficulties was actually
carried out by people with learning difficulties themselves.
An important part of the value-system in the work of People First
is that their members can relate to people with learning difficulties
more easily than staff or professional researchers because they have
relevant personal experience.32
The main reason why they considered they were particularly
appropriate for carrying out the work was because they felt their
personal experiences had given them the ability to identify with
and understand the lives of the residents.33
There are obvious implications in the kind of work that the People
First Report has produced for the work of any moral philosopher
who wishes to make claims based on judgement of quality of life:
these claims must be more adequately substantiated than they typically
are, avoid unfounded and vague empirical claims, and must draw
on a wide and appropriate body of experience. If the readers of this
article disagree with everything else we have said, we nonetheless
firmly believe that this is a crucial point for work in applied ethics,
and one it can ill afford to ignore.
The way in which psychologists locate difficulties in a two-way
interaction helps to reply to the assumptions of many philosophers
that one group is central and another group marginal and marginal
because the problems reside within that group.34
The problems reside, at least partially, in the inability of the so-
called central group to imagine and empathise with an experience

” Whittaker, A., Gardner, S. & Kershaw, .J.Service Evaluation by Peofile with

Learning Dzzm1tie.r: based on the People First Report, Lbndon, Kings Fund Cent&, 1991.
32 Ibid.. p.54.
33 Ibid.; p.56.
” See for example the quotation from Downie and Telfer op. cit., on page 203
of this article.
214 PAULA BODDINGTON & TESSA PODPADEC

which they merely vaguely think of as being very different from their
own. If we even consider that a particular group, like people with
learning difficulties, might not live a valued life, then we are going
to have considerable difficulty imagining ourselves in their shoes and
appreciating the quality of their lives. We will be bringing with us
all sorts of assumptions about what, in theory, they lack and what
contributes towards a valuable life. Work in this area really calls for
an open mind: perhaps the remit of psychologists and other practi-
tioners in the field to assume that all lives are of equal value is a
useful way of keeping the mind open?
Imaginative steps to counter difficulties in communication can help
firstly, in improving accuracy of any measures, and secondly and
perhaps more fundamentally, in helping to address what should be
included in any measures, in bringing other views to bear on the
question of what should be included in any measures. (e.g. see the
example of stimulating toys above, pp.211-212).
In conclusion to this section, we claim that the work of some
psychologists can help to undo some of the implicit bias in the work
of some philosophers against those with intellectual difficulties: in
particular, helping to overcome problems with communication, and
providing a much broader picture of what elements might contribute
towards a good quality life.

WHAT CAN PSYCHOLOGISTS LEARN FROM T H E

PHILOSOPHERS?
It could be argued that psychologists have little need for input from
philosophy. If what they are trying to do is improve quality of life,
then their measures, even if they only tap a very small portion of
what might be considered to be quality of life, could be seen as meeting
their needs.
Psychologists might argue that they are not tackling the question
of what quality of life is in any general sense, they wouldn’t claim
that they had any definitive measure, but are simply working on the
assumption that ‘every little bit helps’.
It could however be argued that this might lead to a very limited
view of what a good quality of life might entail. Without a wider
view of what could contribute to quality of life, psychologists working
in this area might be limiting themselves, and more importantly the
people with whom they work, to a concept of quality of life which
only includes those elements that are easily measured and easily
changed. For example, the psychologists’ work tends to focus on iso-
lated elements of what goes to make up life quality without consid-
ering in any great depth how these separate elements might fit together.
 MEASURING QUALITY OF LIFE 215

This contrasts with approaches.such as Rawls’ which is specifically

concerned with plans of life, the overall shape of a good human life.
Psychologists could clearly benefit from reviewing how different
elements of their work relate to each other.
The above only serves to illustrate the benefits psychologists could
derive from having a more clearly defined theoretical base to their
work. In addition, the complete dearth of theory means that each
study has to stand on its own merits, making it hard to compare or
contrast different studies. In consequence, no coherent body of know-
ledge about what makes for a good quality of life has developed. If
the theoretical base to the quality of life studies was more clearly
delineated, then comparisons between the studies and accounts of
how they relate to each other would be easier to make.
Philosophy could help make explicit the assumptions about quality
of life psychologists are using and so perhaps enable them to question
those assumptions. For example, referring back to O’Brien’s five
accomplishments (see p.206) we can see that these make profound
assumptions about what goes to make a good human life. Briefly,
in order to live a good life we need to have contact with other human
beings, to develop to our full potential and to have a sufficient measure
of self-determination. These assumptions are not spelled out in any
detail by those working in this area. In contrast there has been a
vast body of philosophical work, from Plato and Aristotle onwards,
looking at these very issues.35
Likewise, the ‘every little bit helps’ approach, outlined above, does
assume one theory about the quality of life, that improving quality
in one sphere of life is not going to detract from quality in another
sphere. In the field of learning difficulties dimensions related to auto-
nomy are often seen as very important when discussing quality of
life. One way in which the development of autonomy is encouraged
is through Self Advocacy Groups where people with learning diffi-
culties are enabled to speak out for themselves. This has obvious bene-
fits for the participants in that it enables them to learn various skills
and to take part in an aspect of life that had been previously denied
them. But given some of the measures used by psychologists, there
is no guarantee that becoming involved with Self Advocacy Groups
is going to give you a higher score on a quality of life measure. Indeed,
it may even lead to a lower score if speaking out for yourself leads
to frustration, disappointment and a growing awareness of what in

35 For fuller discussion of this point see Boddington, P. & Podpadec, T. @twm
about need: Exploriq the relationship between smuue prouision and quality of life, paper
presented at the British Institute of Mental Handicap Annual Conference, University
of Reading, 1991.
216 PAULA BODDINGTON & TESSA PODPADEC

life has been denied you. This is not a criticism of the concept of
Self Advocacy, but serves to demonstrate the need for a global account
of what constitutes a good quality of life, perhaps one where the special
place of autonomy is recognised and certainly one which takes account
of the way in which one’s life is developing rather than focusing on
isolated times with no reference to an overall plan. See, for example,
Rawls’ idea of looking at plans of life.

THE QUESTION OF EQUALITY BETWEEN DIFFERENT

LIVES
We have suggested that psychologists would benefit from a considera-
tion of the theoretical work of some phdosophers. Is it however possible
for the psychologiststo incorporate such work and still maintain their
commitment to the view that all lives are of equal value? The ques-
tion that presents itself is that of whether it is possible to have an
adequate and sufficiently developed theory of quality of life which
does not imply that some lives, lives with reduced quality or reduced
potential for quality, are worth less, have less value, than others.
This is a question that deserves a paper in itself, and here we simply
offer a preliminary discussion of the issue.
As we have seen, psychologists tend to ignore the question of what
grounds the value of human life, and assume their answer, that aH
human life is of equal value, whereas what value to accord to different
human Mes has been a major issue with which philosophers have
concerned themselves. It is often the quest for an account of why
life is valuable that leads to an examination of what makes life worth
living, what would give life an acceptable quality. We have also seen
that the major difference between the philosophers we have been re-
ferring to (although this point does not appIy to all philosophers of
course) and the psychologists in question is perhaps in the
psychologists’ refusal to make comparisons between people in terms
of value, against some philosophers’ eager rush to the fray of competing
and differential value. Any moral philosopher worth their salt would
feel uncomfortable with any assumption of value, never being ones
to give away anything of value without a heated philosophical
argument. But, can a grounding be given to the value and quality
of life without at once opening up the possibility of possibly pernicious
comparisons between people?
Kuhse and Singer in their book Should the Baby Live? show, through
looking at cases of extremely damaged newborns such as anencephalic
babies, that it can be very difficult to insist that all human life has
 MEASURING QUALITY OF LIFE 217

the same value, if this implies that the same efforts should be made
to keep all humans alive.s6 If equal value is to be given to people
regardless of handicap, the question may be raised of how we square
this with attempts to ensure that handicapped babies are not brought
into the world - for instance and perhaps least controversially by
avoiding drugs in pregnancy that may cause foetal damage - and
attempts to ensure that people do not acquire handicaps. Many Micult
questions about the way in which we attach value to human lives,
questions very often connected to judgements about the quality of
those lives, need to be addressed.
The whole philosophical project of grounding the value of life
arguably means that value has to be seen to be attached to some con-
crete aspect of an individual. It could well be claimed that there is
nothing to the individual over and above these particular character-
istics. So, given variation between people, the attempt to find some
characteristic that we all have and which could assure us all of equal
worth does not seem promising. No soul remains to modern philosophy
to do this task for us. No human essence remains to any concerned
to avoid the charge of speciesism: that is, the charge of according
special value to human lives simply because they are members of
the species homo sapiens, and not because of any particular features
that individual members of that species possess. Concern with the
moral claims of non-human species, and concern with making moral
judgements on grounds that can be shown to have moral importance
and relevance, has led to an examination of what it is about any human
life that gives it value.
But psychology, in practice, does seem to assume a soul or some
kind of uniquely human and uniquely valuable essence, which grounds
the assumption of value and justifies the quest to enhance quality
of life, and which seem to reside in humans independently of any
particular characteristics they have or lack. Psychology, it could be
said, has in this respect divorced the life from the liver: the liver of
the life has unconditioned value, the life itself may need improve-
ment. How, if at d, this position may be held philosophically is a
question for further consideration.

Department of Philosophy
University of Bristol

Department of Psychology
Universig of Exeter

36 Kuhse and Singer op. cif., chapter 2.