What future for disability equality?

Neil Crowther 15th May 2008

Lancaster University Centre for Disability Research
It's a real honour to have been asked to speak to you all tonight on an
occasion which I hope marks the start of a new and exciting phase in
disability research, and I would like to begin by thanking the tanned man
that is Professor Eric Emerson for thinking of me when selecting a
speaker.
It's also a rare privilege to be on the platform for once speaking my own
words!
Speaking to people involved in academia does though always make me
rather nervous.
In the last two years of the Disability Rights Commission's life, where I
was Head of Policy, I delivered two talks at the Disability Studies Unit at
Leeds University receiving nothing short of a mauling on both occasions.
I am quite sure my role made me somewhat of a target.
That said, Colin Barnes has since described me as his favourite civil
servant...which is probably the most backhanded compliment I have ever
received.
I didn't set out to be needlessly provocative on those occasions, nor will I
this evening, though I hope I will provide plenty for us to have a robust
discussion about.
I do though want to set out the challenges I believe we now face in
advancing equality and human rights for disabled people and more

generally, and what these challenges might mean for the future of
disability research.
And I do so above all else because I want to be able to explore with you
how as a new research centre you might help the Equality and Human
Rights Commission and all others committed to this goal to meet these
new challenges - as a partner, a contractor, and importantly as a critical
friend.

Fair for all

The vision of the Disability Rights Commission was of a society in which
all disabled people could participate fully as equal citizens.
We inherited an agenda of legislative and policy reform laid down by the
Disability Rights Task Force - the completion of which was marked by
the Disability Discrimination Act of 2005.
In our latter years we looked beyond those issues and began to engage
in broader matters of public policy, at the practices and behaviours of
business and at social attitudes.
The Disability Agenda published in February last year set out a range of
recommendations for reform in areas as diverse as child poverty, health
inequalities, social care and criminal justice. 1
We pursued a strategy of placing disability issues at the heart of
mainstream policy and political debates, forging new alliances along the
way.
Using strategic legal tools such as our formal investigations into health
inequalities and fitness to practice standards, the new Disability Equality
1

See: http://www.equalityhumanrights.com/en/aboutus/history/disabilityagenda/Pages/default.aspx

Duty and judicious intervention in human rights cases, we began to shift

the focus from seeking redress for individual acts of discrimination
towards that of prevention and transformation.
We came to learn that what mattered most were the outcomes we
managed to bring about to people's lives, using the range of tools at our
disposal, not just the law.
The Equality and Human Rights Commission of course has a much
wider brief. Its vision is of a society built on fairness and respect, with
people confident about all aspects of diversity.2
Where the DRC's primary role was to secure equality for Britain's 10
million disabled people, the role of the new Commission is in effect to
promote fairness for all of Britain's 60 million citizens.
In just one week, at the Commission through our Helpline, our staff
and Commissioners we can be asked to offer our views, clarify the law
or give guidance on subjects as various as the following:

Should an employee have the right to demand their employers

provide flexibility to allow them to care for an elderly relative?

Should a deaf couple with a deaf child be permitted to choose a

deaf IVF embryo for their second child - or would that violate the
child's human rights?

Is it an act of unlawful discrimination to ask a potential employee if

she is pregnant or plans to become pregnant?

Is it a human right to wear the Christian cross or the Sikh Kara at

work or at school?

See: http://www.equalityhumanrights.com/en/aboutus/mission/pages/visionmissionandpriorities.aspx

Is a person who is thought by his colleagues to be lesbian or gay,

and is teased about it despite their protestation that they are actually
heterosexual, a victim of unlawful harassment?

How should social care be reformed in a fashion consistent with

the promotion of equality and human rights for all

Mending the past and preparing for the future

So we face a far wider range of challenges in dealing with discrimination
and equality as it affects people today.
But our role is not just about mending past injustices, it is equally about
preparing Britain for its future
Demographic change is going to have as profound an effect on Britain's
social and economic future as is climate change and migration
Disability will be a central feature of that change.
People will live longer, but they will also spend more of those years with
an impairment of health condition.
Scientific advancement will see ever more children with complex
impairments and health conditions surviving into adulthood.
Disability is something which will touch many more lives that it does
today, directly or indirectly.
Social, economic , environmental and scientific developments will also
reorder the nature and incidence of particular impairments and health
conditions.
Whereas various physical impairment's caused by industrial injury such
as back pain, disease such as polio, or scientific error such as
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thalidomide are in decline, mental illness, neurological conditions and

dementia are all either on the rise, or more likely to be recognised.
With this the precise disability related barriers and causes of the
inequality people experience are changing also.

The complexity of people's lives

And of course disabled people's life chances are not solely shaped by
barriers which relate to their impairment or health condition.
We know there are multiple factors acting to provide or deny people
opportunities, set to become ever more complex in our increasingly
plural society.
Ageism plays a major hand in denying older disabled people
employment opportunities or access to public services and benefits
available to younger disabled people.
There are over a quarter of a million unemployed lone parents who are
disabled.
The rate of child poverty in white families where there is a disabled
parent is 36%; amongst Bangladeshi families where there is a disabled
parent it is 83%.3
The one group to have experienced no real progress in their
employment opportunities over the last decade is people with low or no
formal qualifications - one third of who are disabled.

Source: Households below Average Income data, DWP

And we know that a person born into poverty is more likely to acquire an
impairment or health condition earlier in their lives than someone better
off, and less likely to escape poverty than a non disabled person.
If we are genuinely serious about addressing inequality, then we have to
avoid two very real risks which Jane Campbell highlighted in her recent
lecture at Cambridge University:

First is an overly narrow representation of disabled people by

other disabled people which denies the complexity of peoples
lives, the multiplicity of their identifications, and the cross-pulls of
their various affiliations. The rich diversity of disabled people has
too often been reduced to the wheelchair symbol.

Second is the related difficulty we could then have in truly

recognising, understanding and responding to the multilayered
barriers and causes of entrenched inequality that people face.

For example, can a person on a welfare to work scheme be both

disabled and old, or disabled and from a minority ethnic community,
or are they forced to choose between these administrative
categories so denying critically important aspects of their identity
which are influencing their employment prospects?
A major role of the Equality and Human Rights Commission is to identify
precisely who is or who may in future experience inequality, and to
identify precisely why and how it might be overcome.
To do so demands that we will look beyond the identity map laid out over
the last 30 years of so.
4

See:

http://www.equalityhumanrights.com/en/newsandcomment/speeches/Pages/Fightingforasliceorforabiggercake.as
px

And whilst redressing injustice still requires a politics of recognition, this

should no longer be reduced to a question of group identity or
allegiance: rather, it requires a politics aimed at overcoming the barriers
which prevent all individuals, families and communities participating as
full members of society; it requires a politics aimed at overcoming the
misrecognition they individually face.
It requires that we accept that what is ultimately important to the
individual is their own and their loved ones life chances, not those of the
group one is considered to belong to.
It is little comfort to an unemployed Bangladeshi woman with mental
health problems - among the most disadvantaged of all people in Britain
- to know that disabled peoples employment rate has improved by 8
percentage points over the last decade.
This is especially so when it is clear that neither the disability movement
nor the social policy programmes aimed at improving disabled peoples
employment opportunity, have gone anywhere near recognising and
responding to the complex barriers she is likely to face.
This is not to suggest that there is no place for a modern disability
movement.
As Jane went onto say: 'The challenges we face at the beginning of the
21st Century demand that the slogan of the disability movement
nothing about us without us speaks to and of our diversity.
We should constantly be asking and adjusting to who us is. It must now
speak less of our separateness and difference and more of our
interdependence and connection with others'
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Universality in an age of difference

Which brings me onto the next challenge - in our age of difference, how
do we build a common appreciation of what equality means, and build
the sort of solidarity needed to affect change?
The words used by the Nobel Laureate Amartya Sen couldn't be more
challenging for those of us involved in disability issues.
But the 'capabilities approach' he advocates provides in my view the
best chance of developing a shared narrative about equality and human
rights which builds on the best thinking of the disability movement.
It is not an easy concept to explain, and so with Tania Burchardt's
permission, you will forgive me for falling back on her words in an
excellent article she wrote on the relationship between capabilities and
the social model of disability.5
In a set of lectures under the title Equality of what? Sen argues that any
normative exercise, for example the evaluation of well-being, equality or
social justice, requires the identification of what is considered valuable:
what are the objects of value?
Welfare economics is based on the idea that the sole object of value is
utility. Utility has a number of different interpretations happiness,
satisfaction or the fulfilment of preferences but is always a subjective
state, unobservable to anyone except the individual concerned. Under
the interpretation of the fulfilment of preferences, an individual has
greater scope to satisfy his or her preferences if she or he has a higher
income, hence it is argued that income is a proxy for utility. Thus
5

Burchardt, T. Capabilities and disability: the capabilities framework and the social
model of disability; Disability & Society, Vol. 19, No. 7, December 2004

inequality in society is to be judged by the distribution of income and the

development of countries is to be measured by growth in national
income.
Sen argues that income is a poor proxy for utility, and moreover that
utility is the wrong object of value with which to be concerned. This is
because some individuals need more income to achieve the same utility
than others. For example a pregnant woman needs more calories to
achieve an adequate level of nutrition than others. It is also because
there are features of the environment which contribute to or detract from
utility which are unrelated to income, such as the prevalence of crime,
the availability of healthcare or public transportation or accessibility of
the built environment in the case of disabled people.
Sen also points out that the subjective satisfaction someone gains from
a given level of income is likely to depend on his or her previous
experience.
Any measure which is not independent of the individuals previous
experience is flawed for the purpose of assessing equality and social
justice. If an individuals previous experience has led to a lowering of
their expectations to such a level that they do not regard their current
situation as undesirable or unjust that should be regarded as additional
evidence of injustice.
The capabilities framework proposes to replace utility with capabilities as
the object of value.
In referring to 'capabilities' we are not talking about the intrinsic
capabilities of individuals. Capabilities are substantive opportunities to
achieve particular states of being or to undertake particular activities.
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It is about freedom to be and do, not the narrow sense of opportunity or

freedom sometimes used to refer only to the absence of someone else
preventing the individual from doing something.
In the Equalities Review an attempt was made to propose a capability
set, or as it was more sensitively put an 'equality scorecard' 6. It included:

Longevity, including avoiding premature mortality.

Physical security, including freedom from violence and physical and
sexual abuse.

Health, including both well-being and access to high quality

healthcare.

Education, including both being able to be creative, to acquire skills

and qualifications and having access to training and life-long
learning.

Standard of living, including being able to live with independence and

security; and covering nutrition, clothing, housing, warmth, utilities,
social services and transport.

Productive and valued activities, such as access to employment, a

positive experience in the workplace, work/life balance, and being
able to care for others.

Individual, family and social life, including self-development, having

independence and equality in relationships and marriage.

Participation, influence and voice, including participation in decisionmaking and democratic life.

Identity, expression and self-respect, including freedom of belief and

religion.

Legal security, including equality and non-discrimination before the

law and equal treatment within the criminal justice system.

According to the capabilities framework, well-being should be assessed

in terms of the capability set of the individual, understood as the range
of substantive opportunities the person has to be or to do a range of
6

See: http://archive.cabinetoffice.gov.uk/equalitiesreview/

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things. Inequality is to be assessed by the distribution of capability sets

among people.
The capabilities approach emphasises the interdependence, rather than
independence of capabilities. For example a person cannot live
independently and experience inclusion in their community if they are
being attacked or harassed. They cannot go to work if they do not have
the support they need to get up in the morning
Taken together the capability set aims to create the conditions in which
human beings can flourish.
In situations where people do not enjoy these substantive opportunities
they are experiencing what Sen calls 'capability deprivation'.
Sounds familiar? I believe this notion of substantive freedoms and
opportunity is exactly that which the big ideas of the disability movement
- the social model, recognising the extra costs of disability, inclusion,
independent living - encourage, but now as a way to promote equality
and human rights for everyone
Debating the future
But how do we determine what these capabilities should be, and how do
we build the progressive coalition needed to secure them?
As DRC's ex Legal Director Nick O'Brien recently argued in an article for
Political Quarterly:
'Economic redistribution, equal opportunity and meritocracy are not
enough to create social equality, the good life and the good society; a
necessary ingredient of social democracy is cultural change of a sort that
is emancipatory of individual and collective human potential; and the
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path to a new and common culture is not through the imposition of

uniformity by a cultural elite, made available to the masses by better
education, full employment and the welfare state; on the contrary, better
education, full employment and welfare are the material conditions which
enable the shared activity of creating a culture in common in the first
place and so deliver a viable form of social equality
The keyword here is participation. A common culture will not be simple
and uniform throughout society, but variegated and complex, the product
of a participatory process that gives due weight to the variety of its
contributors.
What will be common about a culture of this sort is that it is the product
of a democratic process that is truly participatory, and that enables and
celebrates the participation of everyone. ' 7
The ultimate objective of equality and human rights movements is not
about dividing up finite resources among competing interest groups, but
deciding priorities through debate and democratic argument. It is about
genuinely involving people in the decisions that affect their lives
This can work at many levels
For example , a central feature of the disability equality duty is that public
authorities should not only consult disabled people about their practices
but should actually engage their participation in the formulating of those
practices. How can we extend this principle via a single equality Act?
The true radical potential of individual budgets is to unleash the creative
potential of the individual to determine how to use public resources to
most effectively achieve his or her own life objectives - as active
7

O'Brien, N (2008) Equality and human rights: foundations of a common culture?

Political Quarterly - Vol. 79 no. 1 (2008)

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participants, not passive and unfulfilled recipients of what somebody else

believes is best.
This week Government launched a six month deliberative debate on the
future of adult social care.
How through this debate do we get past the situation recently highlighted
by Jane Campbell that 'whilst each fights for a slice of the cake, we are
failing together to fight for the bigger and different flavoured cake we all
need.' and build a coalition for investment and reform built around
shared objectives?

Bringing people together

And it is this idea of Bringing People Together which infuses the
approach of the Equality and Human Rights Commission
Bringing people together in local communities across ethnic or religious
lines to encourage greater mutual understanding using our grants
scheme
Bringing people together across the generations connecting younger and
older people and promoting interaction
Bringing people together to resolve intractable long-term challenges
such as how to organise and pay for care and support in an ageing
society and the challenge of reconciling paid work and care.
Bringing people together to secure social change campaigning to end
the exploitation of migrant workers, against proposals for 42 days
detention and to end child poverty

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And Bringing people together to make the case for equality and diversity
in securing a comprehensive single equality Act, able to address the
sorts of issues I have talked about today including how we narrow gaps
in poverty, independent living and care, social mobility and opportunity
and in relation to power and inclusion. 8
So how can the Commission be brought together with an institution
like the Centre for Disability Research?
So what role can a modern disability research institute play in meeting
these new challenges?
I believe fundamentally it means being an active agent of real social
change, not a passive commentator
As a Commission and as the DRC before it we frequently struggle to find
credible evidence of the real causes of social and economic inequality
facing disabled people.
Plenty of theoretical debate, but very little that could be used in practical
policy making.
To achieve this we need to bring new perspectives to the task,
underpinned by the social model but drawing on a wider range of
political, economic and social theory concerning equality, human rights
and social justice, and able to deal with complexity.
Some of the questions on our agenda right now include:
Why are some disabled people more likely to be the targets of
violent and abusive crimes? What motivates the offenders?

See:
http://www.equalityhumanrights.com/en/aboutus/mission/Pages/BusinessPlan0809.a
spx
8

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 Who is most distanced from the labour market and why?

What is the real relationship between disability and low skills?
To what degree does class play its hand in determining disabled
people's life chances?
We need evidence of what works, or what might work.
How do we eliminate child poverty successfully where there are
disabled parents involved?
How can we really get to grips with health inequalities?
How might cooperatives or mutuals help support and expand
independent living?
How can we safeguard adults with a learning disability without
undermining their independence?
How do we challenge the 'benevolent prejudice' many disabled
and older people experience?
And critically we need to be able to demonstrate clear public benefits
from addressing these things
What are the social and economic cost benefits for reform,
investment and change?
How can we make these issues relevant to others or appeal to
enlightened self interest?
What are going to be the most persuasive arguments for the
audiences we need to reach?

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To achieve our aims, the Commission urgently needs answers to these

questions, and we need one which can look beyond the confines of
disability studies, forming new alliances and partnerships to do so. I
hope this new Centre might take some of these thoughts on board and I
would be more than happy to discuss them in more detail.

Lost our found - what future for disability equality

So in conclusion - what future for disability equality?
Noone can sensibly dispute the enormous achievements of the British
disability movement over the last two decades.
In its thought leadership with the social model of disability, in its political
strategy of barrier removal, in securing the decade of legislative progress
in disability rights between 1995 and 2005, and in its innovations around
redrawing the relationship between citizen and state as exemplified by
direct payments, centres for independent living, the principle of
involvement in the Disability Equality Duty and most recently in using coproduction to develop the Independent Living Strategy.
Those ideas are now being internationalised in the UN Convention on
the rights of persons with disabilities which we expect to see ratified by
the close of the year.
Some warn that the strength of these ideas and the well articulated
demand that a disabled person's life is of equal value, will be lost or
watered down in these new arrangements and discourse.
An alternative view is that the ideas of the disability movement: barrier
removal, reforming public services to give people greater control over
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their own lives, and equality legislation based on accommodating

difference rather than ignoring it - are the blueprint for the next stages of
promoting equality and human rights overall.
Rather than claiming these ideas for itself, the opportunity ahead is, I
believe, to offer them to the wider world, as solutions to a range of social
and economic inequalities
The disability movement has increasingly engaged in - and is indeed
winning - the battle of ideas in this country. Not every injustice has been
conquered - quite the contrary - but the tide is turning in its favour.
The future of disability equality hangs in my view on whether or not this
position is capitalised on
And I think the dreams of disabled people looking ahead a quarter
century ago during the International Year of Disabled People in 1981
should help us in deciding which way to go:
'As we have equal rights, so we will have equal responsibilities. It is our
duty to take part in the building of society'

Far from getting lost, active participation in this broader enterprise of

promoting equality and human rights for all should mean the ideas and
objectives of the disability movement move yet another step closer to
being found.
I look forward to working with you in the months and years to come in
making that goal a reality, and I wish all involved in the initiative we are
here to launch this evening every success.
Thank you.
9

See http://www.un.org/esa/socdev/enable/diswpa00.htm

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