Public Attitudes to people with a learning disability, and
how to influence them
December 1999
Pete Ritchie
SHS
Introduction
The steering group of the national review of services for people with a learning disability
commissioned the Scottish Human Services Trust to provide a report on public attitudes
towards people with a learning disability. This paper is one element of that report. It draws on
and is intended to complement the three other elements of the report:
• a commissioned review of relevant literature by Kirsten Stalker
• an opinion poll in May 1999 commissioned from System 3
• a ‘round table’ discussion in June 1999 involving a range of stakeholders
Why public attitudes matter
Our beliefs, values and attitudes affect the way we treat other people. This is true at a person to
person level, at a group to group level, at a society to society level and at a society to subgroup
level. In general, if most influential people in society value a particular characteristic, belief or
attribute, then people with that characteristic, belief or attribute will be treated better. If we
want to see a particular group in society being treated better, we must achieve a parallel change
in the attitudes held by society towards that group. Otherwise, any changes will be
unsustainable.
But the relationship is not simple and linear. It is not a question of changing attitudes first, in a
vacuum, and then changing social policy and then changing institutional and professional
practice. These all move along (or get stuck) at different speeds, usually in a patchy, untidy way
like a three-legged race.
Beliefs, values and attitudes both influence and are influenced by actions and policies, and this
process of two-way influence takes place in a complex soup of other factors. Policy may be
ahead of professional practice, or vice versa. Public attitudes may be behind policy, or vice
versa.
Individuals may hold beliefs which are inconsistent or incompatible with each other. Even when
people are clear about their attitudes and values, these may well be in conflict with their actions
in particular situations. For example, residential care staff may agree that people should be
treated as individuals but may work in an environment where they treat people as a batch.
Social policy which is implemented and promoted consistently over time can clearly change both
attitudes and behaviour - as has happened for example in relation to drinking and driving and
towards physical violence against children.
2
In relation to any issue like this, the population can be thought of in several bands. At one end
are the ‘radicals’ who have been advocating this policy for years and have been seeking to
influence opinions both of the general public and of policymakers.
At the other end are the ‘reactionaries’ who will maintain their opposed attitude to this policy
indefinitely even if they comply grudgingly with the new reality. In between, the majority of the
population are ‘floaters’ on this issue - people who, once they see which way the tide is flowing,
will move from mildly against to mildly in favour and so shift the balance of opinion behind the
change. (People who are radicals on one issue may be reactionaries on another and floaters on
most.)
Policies which move too far ahead of public attitudes or professional practice risk creating a
wave of resistance. However, attitudes of all individual members of the general public do not
need to be changed before social policy can be changed.
Public policymakers have a responsibility to enact policies which they believe in good faith to be
fair and beneficial to the groups most affected and which are acceptable to the majority of the
general public. These policies in turn affect public attitudes and become embedded in people’s
sense of ‘the way we do things in our society’. This would be true, for example, of the Italian
commitment to inclusive education for all children or the Danish commitment to care at home for
older people.
Influencing public attitudes, therefore, is part of a campaigning strategy for pressure groups and
part of an implementation strategy for government. For government, having decided on the
direction and nature of change required, the three key questions are:
1. What are the underlying values we want to promote, and what changes in policy and
practice do these values imply?
2. Who are the groups in society whose attitudes have most influence on the success or failure
of this proposed change? What influences their attitudes?
3. What strategies are likely to be effective in influencing the attitudes of these people and
groups in the short and long term?
The rest of this essay takes these three questions in turn in the context of the learning disability
review, and then goes on to make some recommendations for action.
3
1.
What are the underlying values we want to promote, and what
policy and practice do these values imply?
changes
in
The underlying values of the review are equity, inclusion and empowerment. The review takes
as a starting-point that each person with a learning disability
• has the same human value and human rights as anyone else
• has the right to live a fulfilling life, and to contribute to community life wherever possible
• should be seen as an individual with individual needs like anyone else.
• should have help with communication, as required.
• should be consulted about her needs and be involved in decisions about the services she
receives
• should receive services that meet her individual needs and help her to achieve her potential.
• should use mainstream local services that meet her needs wherever possible.
• should have specialist services available if she has additional special needs. Specialist
services should enhance and not replace mainstream services.
• should receive services which are non-segregated and age appropriate.
• should be able to exercise choice, wherever possible.
• should receive the least restrictive services possible
• should not be discriminated against, and
• her family should be informed and consulted about the services available.
There is a huge gulf between these straightforward statements and the real social situation of
many, if not most, people with a learning disability in Scotland. This was emphasised by the
recent consultation report commissioned by the Scottish Executive as part of this review ‘If you
don’t ask, you don’t get’.
People with a learning disability are a disadvantaged minority within society with diminished civil
rights and poor access to ordinary resources and services. More than 10% of adults with a
learning disability are still living in large segregated hospitals and nursing homes.
Adults with a learning disability are much less likely than other people in society to have their
own home, to have a paid job, to be included in their local school, to have a network of social
contacts, to have a bank account, or to have any personal wealth. They are much more likely
than other people in society to be harassed and bullied as they go about their daily lives.
The pattern of service provision is still one of segregation. Some 8,000 children with a learning
disability attend separate schools and units. Over 8,000 adults with a learning disability attend
segregated day centres, most of them on a full-time basis throughout their working lifetime.
They get to the centres on segregated buses.
4
Day centres are the major service provided by social work departments to people with a
learning disability, and for many families they are the only support available. In other words, the
backbone of service provision for adults with a learning disability is a segregated centre with
limited scope for individualisation and choice.
Most adults who live outside the family home are placed together in group settings with other
adults with a learning disability not of their choosing. In most of these group settings, people
have restricted housing rights and little control over the staff who work with them.
Two recent examples illustrate the gap between aspirations of an ordinary decent life in the
community and the reality of life in ‘serviceland’. One recent hospital resettlement programme
has placed 88% of all the people moved in nursing homes or group homes, and there are
currently proposals to move 40 of the remaining people in a block to another longstay hospital
some 20 miles away. In another part of Scotland, a woman living in a group home recently had
to wait for three weeks for approval from the local authority registration and inspection team for
her mother who was visiting from England to be allowed to stay in her house overnight.
These examples are not anomalies within an overall pattern of equal treatment. They are
reflections of a deep-rooted discrimination against people with a learning disability. Decent
everyday standards which we would apply to ourselves and our friends simply do not apply.
These examples also reflect the resilience of traditional service models despite changing social
attitudes. The longstay hospitals flourished at a time not so long ago when the purpose of
services for people with a learning disability was explicitly to keep people out of sight and out of
mind. Yet they have survived forty years of ‘community care’ policy and are still a major focus
of public expenditure and management effort.
Given the gap between what should be and what is, the review will set out a clear direction of
change. Government policies at national and local level will expect and encourage:
• An inclusive approach to policymaking so that when plans are made for any services,
initiatives, facilities and resources designed to serve or involve the public, people with a
learning disability are explicitly considered as part of that ‘public’.
• A greater capacity in mainstream services to include, welcome and serve people with a
learning disability
• People with a learning disability being more involved with and better connected with society
- both their local community and the wider world
• More people with a learning disability having the chance to work and earn money
• More people with a learning disability having their own home
• More responsive, individualised support services which genuinely empower and enable
people while providing a sensible level of safety and back-up
• More choice and control by people with a learning disability over what services do on their
behalf
5
• Recognition of people with a learning disability as equal citizens entitled to decent treatment,
and effective safeguards to make this a reality for the people who are most vulnerable to
exclusion, discrimination and abuse
6
2.
Who are the groups in society whose attitudes have most influence
on
the success or failure of this proposed change? What
influences their
attitudes?
There are at least six different groups whose attitudes are likely in different ways to influence this
process of change:
• Public policymakers, funders and commissioners
• Specialist service providers
• Mainstream service providers and other gatekeepers to opportunities
• The general public
• People with a learning disability and their families
• People working in the media
2.1
Public policymakers, funders and commissioners
People with a learning disability are affected by general laws and policies affecting all citizens as
well as by policies and legislation which is specific to disabled people.
The ways in which existing legislation is interpreted and enforced and the way in which new
legislation is drafted is greatly influenced by public perceptions. The Human Rights Act, the
Disability Discrimination Act and the Community Care (Direct Payments) Act are all examples
of existing legislation which applies to people with a learning disability. How much difference
these laws make to people with a learning disability depends to a large extent on how
policymakers interpret and use the law.
The drafting and amendment of legislation now in the pipeline will also be affected by public
perceptions of people with a learning disability. For example, the Adults with Incapacity Bill is
designed to provide protection for some people with a learning disability but has to avoid the
assumption that a learning disability automatically implies incapacity.
The Education Bill will affect disabled children, and the balance in the final Act between
promoting inclusive education and maintaining the current separate special school system will be
determined fundamentally by attitudes and perceptions of disability.
A housing bill will come into effect next year following the Green Paper. Housing adapted for a
disabled person is currently excluded from the right to buy - with the intention of maintaining
adapted stock within the public sector; but one consequence of this is to increase rigidity within
the housing system for disabled people and to reinforce the difference in home ownership rates
between disabled people and the rest of the population. Whether this is seen as an equal
opportunity issue or a specialist provision issue depends on the attitudes of the people involved
to people with a learning disability.
7
There are similar issues at a local level. Local councils can regard the concerns of people with a
learning disability living at home with older parents as concerns for the housing department or
concerns simply for social work. They can fund specialist childcare and playschemes or they
can support inclusive provision. They can send children to special schools out of area or they
can invest in inclusive education in their own area. They can see day centres as an issue of
respite for families or as an issue of lifetime unemployment for the people who attend. They can
commission group homes from large specialist service providers or they can fund
neighbourhood support services using a mix of ordinary housing. They can encourage or
discourage the use of direct payments by people with a learning disability.
Again, the way they see these issues depends on their underlying attitudes to people with a
learning disability and their place in society. None of this is to deny the complexity of managing
change - or the reality of having to find resources at the margin in the short term while looking to
change investment patterns in the long term. But without a clear direction, that reinvestment will
never be made.
What influences their attitudes now?
Many people in these positions have had little exposure to structured debate on the values of
disability, equity and inclusion. Normalisation, and the social model of disability - the two main
disability theories described in Kirsten Stalker’s paper (Appendix 1) - are not well understood
by many people involved in policy discourse. The more recent notion of ‘social inclusion’ is
much talked about but is still a catch-all phrase rather than a well established conceptual
framework.
However, there is a strong tendency for groups discussing policy to move as quickly as possible
on to ‘practical solutions’. This is for a number of reasons: the sort of meetings we have do not
lend themselves to philosophical enquiry; we get uncomfortable when different personal values
and opinions are expressed; we feel a pressure to find answers rather than struggle with
complicated questions; we are comfortable with discussions which focus on marginal changes
within our current map of the world; and we recognise that we can only influence a small part of
the wider agenda.
Given this, policymakers’ attitudes - unless they have direct personal contact with people with a
learning disability - tend to be heavily influenced by the current pattern of services. The usual
concerns of service agencies - demarcation lines, qualifications, regulations, budgets, contracts can dominate the agenda.
2.2
Specialist service providers
This refers to the range of organisations which provide specific services for people with a
learning disability - from local authorities providing day centres to healthcare trusts running
longstay hospitals to local voluntary organisations running drop-in clubs.
8
Their attitudes are critical in two crucial ways to the success of the review. Firstly, their
attitudes influence the way they treat and represent the people they serve. If they see adults
with a learning disability as children in need of protection, they will tend not to empower and
enable them or treat them with respect. If they see adults with a learning disability as
fundamentally different from other people in society, they will set up parallel services - special
housing, special education and special leisure activities. If they see adults with a learning
disability as fundamentally similar to each other, they will create rules and structures which work
against individualisation and choice. If they see people with a learning disability primarily as
deficient and in need of improvement then they will want to fix people before letting them be
with other people.
If they see a family with a disabled child as a disabled family they will tend to hear what they
want to hear, not what the family is actually saying. If they think it is acceptable or inevitable for
adults with a learning disability to have fewer rights, fewer friends, less privacy, less security,
less space, less education, less control, less freedom and less money than other groups in
society, then they will tend to settle for lower standards.
Secondly, service providers send powerful messages to the rest of society - to the mainstream
services and the general public who are often seen as ‘the problem’. These messages are
conveyed through the way services are designed and organised, the imagery and language
surrounding the service, the way staff behave.
Group homes, day centres and institutions are seen by members of the public as special places
for special people - ‘people like that’. The larger the place, the harder it is for members of the
public to see people as individuals, as locals, as neighbours. Special buildings tend to import
people from other communities, so the people who come to live there may have few ties and
connections. There is still a tendency to build ‘special’ housing which is ‘for’ people with
learning disabilities and which is clearly different from the housing round about.
When people are seen as strange, differences compound each other: if one person is very noisy
and one person uses a wheelchair the whole group may be seen as noisy people in wheelchairs.
The larger the place, the more likely it is that people will ‘visit’ the community in clearly
identifiable groups. Some communities are more tolerant than others, but few communities can
overcome the strangeness created by grouping together people who are already different and
already lacking in local connections.
If staff are also ‘visiting’ the community to work in a group home, this adds to the sense of
strangeness. They have an important role in mediating social connections, but if they are not
well-connected themselves, they have no firm base from which to do this.
9
If staff organise childish activities for people; if they speak to them or for them as if they are
children; if they always take people to the pantomime and never to the theatre; if they take three
people to the gym when only one person wants to go and no-one has the proper gear, then
inevitably they draw negative attention to the people they support. If staff never allow a direct
connection between a person they support and a member of the community unless it is regulated
and managed by the service, then people in the community will get the message that these
people are so different that they need an expert present at all times.
This all still happens, although at the same time some providers are highly sensitive to these
issues and highly creative in the way they help the people they support to be seen as individual
citizens and community members.
Just as important are all the wider messages given out by the organisations providing services.
Many of the messages emphasise people’s dependence, vulnerability and limitations and the
‘burden’ carried by carers.
Some charities still send round rubbish bags door-to-door inviting members of the public to
donate their unwanted goods to help disabled people. Some large professional voluntary
organisations still run charity shops selling second-hand clothes while others encourage disabled
people to stand in supermarkets with collecting cans to raise money on their behalf.
The association between disability and charity in Scotland is deeply ingrained and is a major
obstacle to the public seeing and treating people as equal citizens. While there is no doubt that
the army of volunteers who work in charity shops, rattle cans, organise shows, run raffles and
quiz nights, abseil down buildings and run marathons are well-intentioned, the consequences for
disabled people are more negative than positive. If people spent the same time and energy on
direct personal action to include people in society or on campaigning for changes in policy and
practice, people with a learning disability would see far more benefit.
There is not room here for a full account of these issues, which form a key element in the theory
of normalisation.
What influences the attitudes of service providers?
Like anyone else, staff beliefs and attitudes are influenced by the messages they received in
childhood. The attitudes of trained staff also reflect their professional training and socialisation,
which in some cases happened in the early 1970s (using textbooks written in the 1950s).
Staff attitudes are influenced subsequently both by external changes in policy and legislation, by
effective in-service training and (more strongly) by the organisational culture within which they
work.
The theory in use within the organisation about people with a learning disability, about the
community, about the role of different professionals and agencies is conveyed both implicitly and
10
explicitly to staff. Staff working in more inclusive and individualised settings tend to hold more
positive beliefs about people’s capacity and about the community than staff working in more
segregated and regimented settings.
2.3
Mainstream service providers and employers
Mainstream service providers are the banks, shops, hotels, pubs, restaurants, housing agencies,
sports and leisure centres, health centres, police, dentists, schools and colleges, community
education services, bus and train operators, travel agents, insurance companies, power
companies, phone companies, advice and information services, and other organisations which
serve the general public.
Also included here are the generic social services such as the home care service, welfare rights
teams, drop-in centres, neighbourhood projects, care and repair, and similar services which
support a wide range of people in the community who need some assistance.
Employers are included here alongside service providers since they have statutory
responsibilities not to discriminate against disabled people.
These people’s attitudes clearly influence the ability of people with a learning disability to use
everyday services and to make connections with their community and with the wider society.
At the most basic level, people with a learning disability still experience simple rejection - ‘we
can’t help you, try elsewhere’ - and this is clearly unjust. From 1 October 1999, under the
Disability Discrimination Act service providers will have to:
• make reasonable adjustments to policies, procedures or practices which exclude disabled
people
• provide auxiliary aids and services if doing so will give disabled people access to a service
(such as providing information usually found in a leaflet on cassette for anyone who could not
read the leaflet); or
• where there is a physical barrier to service, find a reasonable alternative method of delivering
the service (for example, a chair user could be visited at home by a doctor if they were
unable to get into the surgery because of steps).
While the law can make discrimination unlawful and can require reasonable adjustments, it is
important that service providers see people as valuable customers, not just as people they have
to accommodate because the law says so.
Similarly, employers with 15 or more staff must make reasonable adjustments for employing
disabled people and must not discriminate against staff or in their recruitment practices. (It is not
clear why this applies only to employers with this number of staff rather than being seen as a
general right as is the case with racial or gender discrimination). However, there is also a big
11
difference between not discriminating and making positive efforts to recruit and retain disabled
people, and the attitudes of employers are a key part of this difference.
What influences the attitudes of this group?
Many people in this wide range of ‘mainstream’ organisations may have had little or no direct
contact with someone with a learning disability. Unless people have had this personal
experience, their attitudes will be similar to those of the general public, shaped by the messages
they received in childhood and what they have picked up from the media and other ‘opinion
formers’.
However, many people in this group will also have some exposure to formal training about
‘equal opportunities’ or ‘serving customers with special needs’. Some of this will be in the
context of the recent Disability Discrimination Act.
2.4
The general public
This group is taken to include all the people who come into contact with people with a learning
disability but who do not have any formal responsibility to provide a service to them or to
respond in a particular way. This includes neighbours and other local residents, people out and
about on the street and in shops.
The general public also has opportunities to meet people with a learning disability through their
various social roles as well as through chance encounters ‘on the street’.
For example, the ‘general public’ may meet people with a learning disability through school or
college, as employees in the same company, through the church or the tenants association.
They may also meet people through a wide range of community associations and interest groups
such as the canal improvement society, the ice hockey supporters club, the choral singers and
the bird-watchers.
What influences the attitudes of the general public?
Regular contact with someone who has a learning disability is associated with a more positive
attitude. In the System 3 poll of May 1999, most people (58%) report no regular personal
contact with someone with a learning disability. Of the 42% who do, 15% have contact through
work and 19% through family.
The poll found that 88% of all respondents agreed they would be happy to live next door to
someone with a learning disability and 78% agreed that people with a learning disability are ‘just
like other people’. In the context of these generally positive attitudes towards people with a
learning disability, the attitudes of people who had regular contact with someone with a disability
were more positive than the attitudes of people who did not.
12
Like any other opinion poll, this survey can only report what people say they believe. In order
to impress the interviewer people may say their attitudes are more positive than they really are.
Even if their attitudes are genuinely positive, their behaviour in real life may be much less
positive. The survey by ENABLE at around the same time which showed that huge numbers of
people with a learning disability experience bullying and harassment indicates that a significant
minority of the general public behave in hostile and offensive ways.
Nevertheless, this survey suggests that contact is a positive influence, although it does not
actually prove a causal connection. The group who reported the most negative attitudes
(people over 65) and who had the least contact (only 30%) may have negative attitudes and
little contact for unrelated reasons. However, other research (see the literature review in
Appendix 1)supports the causal link between personal contact and positive attitudes.
People without regular personal contact with someone with a learning disability were more likely
to say ‘don’t know’ or to express slight rather than strong agreement or disagreement with a
statement. Even so, people clearly rely on other sources for their opinions. 40% of the sample
agreed that ‘adults with a learning disability are like children in an adults body’, rising to 48%
among the group aged over 65.
These other sources include the messages people received in childhood and in their education
and training; press and magazine articles, literature and TV shows, and the messages from
charities and service providers described above. Members of the general public will also be
influenced by opinion-formers such as doctors, head teachers, ministers, police officers, local
councillors, and public personalities.
2.5
People with a learning disability and their family
The attitudes held by people with a learning disability and their family have a strong influence on
the quality of life of people with a learning disability and on the attitudes of other people.
Like any other oppressed and marginalised group, people with a learning disability may
internalise the negative views of other people and see themselves as having little to contribute
and having few rights or entitlements. This makes it easier for other people to exclude them or
treat them badly. If people have a positive view of themselves as equal citizens, as people first,
they are more likely to have high aspirations and positive achievements.
The attitude of family members is also critical. Parents who have accepted the negative views
and low expectations of some professionals may believe that their son or daughter will never
develop any autonomy. They may underestimate their son or daughter’s capacity to
communicate or to form their own opinion. They may be more reluctant than other parents to
allow their son or daughter to take risks, or to trust other people to take care of them. Some
13
parents still experience a sense of shame, and may be reluctant to believe that anyone really
likes their son or daughter.
What influences the attitudes of people with a learning disability and their family?
Before the birth of a child with a learning disability, families have the same range of positive and
negative attitudes as anyone else. However, their encounters with professionals, services and
other families will influence these attitudes strongly in one or other direction.
Their first encounter with services underlines society’s attitude to disability. Expectant parents
are offered tests to see if their baby will have an impairment. and if these are positive, offered
the chance of termination.
When a disabled child is born, both the general message given to families and the quality of
factual information provided varies widely. Some families feel that they have to emphasise the
child’s dependency and difference to qualify for any help.
Many services are focused on the child’s impairment or disability rather than their childhood.
Some services for children are still based on taking the child away to a special place for a
special service, and this in turn reinforces the perception of the child as different in kind from the
rest of the family.
Families who are well-connected to wider networks of information are more likely to be able to
put negative messages in a wider context and to challenge professionals with low expectations.
The attitudes of people with a learning disability are influenced by their family, by their
education, by the staff who work with them, by the way they are treated in their community, by
the messages they pick up from the media and by the organisations to which they belong. It is
only recently that people with a learning disability have started to develop a positive cultural
identity, and this is still fragile.
It is still common to hear professionals argue that an issue should not be discussed with
someone with a learning disability because it will ‘raise expectations’. People with a learning
disability, like anyone else, should have the dignity of ambition.
2.6
People working in the media
The way people with a learning disability are presented in many newspapers and the way policy
issues are reported tends to reinforce rather than challenge public stereotypes.
At the same time, serious radio and television programmes have in recent years become far
more aware of current disability thinking. Codes of practice and the recruitment of disabled
14
reporters and presenters have contributed to a significant improvement in the handling of
disability issues.
Any policy which promotes inclusion will be seen by some people in the field - including a small
number of service providers, parents and people with a learning disability - as misguided or
dangerous. These critics are always likely to get disproportionate column inches since they have
something controversial (and therefore interesting) to say. So a degree of hostile noise in the
media is an inevitable consequence of any change programme.
Probably the more serious impact of the media comes with the way people with a learning
disability themselves and their families are presented. Stereotypes are easy to understand and
present, so people with a learning disability often appear as childlike, as victims, as poor things
in need of charity, as tragic but brave, as quaint, or as sick and in need of constant care. Their
families may equally be portrayed as burdened, saintlike, tireless campaigners, with their whole
identity focused on their relationship to the person who has a learning disability.
It is unusual for a media item to report the views of people with a learning disability directly, and
this reinforces the impression that people with a learning disability are passive victims rather than
people with something to say.
15
3.
What strategies are likely to be effective in influencing the attitudes of these
people and groups in the short and long term?
The current social situation of people with a learning disability as a largely excluded minority, the
historical legacy of negative social attitudes towards people with a learning disability and the
strange ways in which many dedicated services are organised provide a formidable image block
which any efforts to change public attitudes must recognise.
Attempts to influence attitudes which are detached from policies and practices which promote
social inclusion are likely to be ineffective. The most important way to influence and improve
public attitudes to people with a learning disability is to implement social policies and service
reforms which ensure that people who do not have a learning disability spend time living,
working and learning alongside people who do. This does not mean housing people in hard-tolet areas without support or putting disabled children into mainstream classrooms without careful
planning.
The main strategy, then, should be one of developing inclusive services and supports. At the
same time, it is worth investing in measures to influence public attitudes directly, as part of the
‘three-legged race’ described earlier. This section discusses approaches which might be useful
with the different groups described above.
3.1
Public policymakers, funders and commissioners
This group operates both at local and national level in a noisy political environment with many
competing demands from different agendas and interest groups. It is therefore important to use
the opportunity of the learning disability review to gain the attention of this group.
Once this group’s attention is focused on ‘learning disability’ issues, two strategies are required.
Firstly, people need to spend some time learning and talking about theory, attitudes and values.
There will be all sorts of resistance to this. However, without a clear theoretical and ethical
structure efforts to achieve long-term change in the pattern of services soon drift off course.
Secondly, people need to learn more about what works, both in terms of ‘what sorts of services
support social inclusion effectively’ and in terms of organisational change - ‘how can we work
together effectively to manage reinvestment in the new pattern of services’. Without this
knowledge, people tend to commission more of the same and to get stuck in the same turf
battles which afflict every service reform.
In seeking to influence policymakers, funders and commissioners, it is essential to reach people
working in generic as well as specialist fields, and to involve elected and unelected members as
well as officials. Policies in housing, employment, education, justice, paediatrics, the benefits
agency and primary care have a significant impact on the lives of people with a learning
disability. The current emphasis on cross-cutting initiatives and ‘equal opportunities proofing’
16
provides an opportunity to establish a temporary policy domain of ‘social policy and people
with a learning disability’ in the early stages of implementing the review. This idea is discussed
more fully in the recommendations section.
3.2
Specialist service providers
This group is most directly immersed in the current issues, and the attitudes of staff and
managers in these agencies are essential to the success of the review.
In-service training is the most common approach to influencing the attitudes and expanding the
knowledge of this group, and many providers already operate in-house schemes of induction
and in-service training which support the attitude changes required by the review.
However, specific initiatives to address attitudes within provider agencies may still be a good
investment. Firstly, these provide an opportunity to develop and disseminate new up-to-date
learning materials and approaches which are more effective than those currently in use within
agencies. Secondly, these can create opportunities for shared learning between staff from
different agencies and between staff, service users and families. This helps to create a much
stronger sense of common purpose and builds capacity for local joint working. The attitudes of
staff working in more traditional service settings are easier to influence if people are in the same
room as staff working in more inclusive services.
3.3
Mainstream service providers and employers
This group is harder to reach than the group of dedicated service providers. While in Scotland
there may be around 20,000 staff who work wholly or mainly with people who have a learning
disability, there are perhaps a million employers and people working in mainstream services who
will come across people with a learning disability.
The most effective way to influence attitudes is likely to be through contributing to the design or
delivery of training sessions, either as part of people’s general professional training or as part of
special training on equal opportunities or the DDA. For example, a short module on learning
disability could be included in training for the police. Housing staff should have the opportunity
to discuss learning disability issues as part of in-service training to address the implications of the
DDA for housing providers.
Lothian Regional Transport has recently provided training in disability equality for its bus drivers
to coincide with the introduction of accessible buses, and this is a good example of a
mainstream service provider taking responsibility for shifting attitudes.
The police and other agencies with a responsibility for community safety have a particularly
important role in tackling harassment of people with a learning disability. Some people in the
17
community think it is acceptable to bully and harass someone with a learning disability simply
because of who they are.
It is essential that when people with a learning disability report these incidents to the police or to
the local authority that they are taken seriously. (See for example the recent ENABLE study)
Just as for people from ethnic minorities and for women, for people with a learning disability the
complacency of the authorities is as hurtful and demeaning as the original attack.
People with a learning disability are themselves a key resource in influencing attitudes. They can
and should make a major contribution to awareness-raising both directly as trainers and
indirectly through writing and producing training materials, but this requires organisation and
resources to do well.
There is a shortage of Scottish audio-visual material designed:
• for mainstream housing agencies about people as tenants and owner-occupiers
• for employers and enterprise companies about people as employees and entrepreneurs
• for leisure and recreation staff about people being included in ordinary activities
• for doctors which show people talking about their health concerns
• for teachers and school boards which tackle issues of inclusive education
Materials like this can make much more specific points in a language and style which suits the
audience. It is crucial to get the tone and style of these materials right, with people with a
learning disability and their families centrally involved in planning and scripting and with a highly
professional production.
3.4
The general public
General ‘educational’ poster or TV campaigns are not an effective strategy for influencing public
attitudes in relation to people with a learning disability. The recent ‘see the person’ campaign by
the DFEE is no exception to this.
Many general image enhancement campaigns suffer from the ‘motorcycling grandmother’
problem: what makes this person interesting is that they defy conventional stereotypes of
‘people like that’. But this may do little to change people’s beliefs about most grandmothers or
most disabled people who are assumed to be nothing like the heroic or exceptional person
featured. More generally, there is the ‘medium is the message’ problem: if the message is that
‘people like that’ are just ordinary people, why are you telling me?
Schools offer an opportunity to reach the future ‘general public’ and to influence the attitudes of
the next generation. There are problems teaching tolerance and diversity within an educational
system which still segregates children. The negative message received by a child from a
mainstream primary school who goes on a trip to visit a special school is more powerful than
any number of theoretical discussions about equality.
18
Despite this, good disability equality education in schools will have a positive effect. Disability
equality education should be seen as part of the wider social and personal development
curriculum and linked to issues of bullying, self-respect, gender and race equality and cultural
diversity. It is essential that disability equality education is done to a high standard and led by
competent teams which include people with a learning disability.
The current Disability Equality in Education project funded by the DFEE and Comic Relief to
work in England is a good example of a well-organised and clearly-focused initiative which
should be extended to Scotland.
3.5
People with a learning disability and their families
There are many useful strategies for influencing the attitudes of people with a learning disability
and their families. These include:
• encouraging positive attitudes from professionals, in particular doctors and social workers
who have enormous power to shape people’s views
• providing knowledge about laws, policies and good practice, and giving people access to
sources of further information
• helping people make contact with families and people with a learning disability who have
achieved particular successes - for example, getting a job or owning their home
• discussion sessions on values and attitudes
• supporting leaders in the disabled people’s movement to act as change agents, educators,
advisors and role models
• supporting organisations of people with a learning disability and organisations of families, and
providing these organisations with good information
3.6
People in the media
A whole essay could be written simply on the issue of influencing media coverage, and much of
this would apply to any area of public policy. The new parliament will bring with it an increase
in media coverage of health, education, employment and welfare policy, and this may make it
easier to build relationships with well-informed specialists in the media. Three specific
approaches which may be helpful in relation to people with a learning disability are:
• providing regular briefings on learning disability policy issues to people responsible for
reporting on health, employment, education, housing and community care
• providing media training for people with a learning disability and family members who are
active in pro-inclusion groups
19
• paying careful attention to language and imagery in press releases and public documents, so
that these do not inadvertently reinforce media stereotypes
It is difficult to find appropriate ways of publicising the ‘good news’ stories. Stories about
individuals who have started work or have got their own home or have been included in their
local school or contributed to their local community always run the risk of presenting the person
as a child who has done well. Effectively, someone is being singled out for praise because he or
she has done something ordinary, with the implication that this is unusual or heroic for ‘people
like that’.
So it may be more helpful to concentrate on stories which show positive changes for a number
of people - for example, “as a result of this resettlement programme life has changed and
improved for a range of people, and this is what people have to say about it....”
20
4
Suggestions for action
The first set of suggestions which follow are for the Parliament and the Scottish Executive in the
context of the national review. They fall into three groups:
• The specific initiatives to influence attitudes which should be funded or encouraged as part of
the national review
• The way the national review should be debated, presented and implemented so that this
process has a positive influence on public attitudes
• Ongoing efforts to influence attitudes more generally within the Executive and the Parliament
and the messages sent by the Executive and the Parliament to the general public
The second set of suggestions are for statutory and voluntary sector service providers, all of
whom have a clear responsibility to influence public attitudes.
The final set of suggestions are for people with a learning disability and for families
Suggestions for the Scottish Executive and the Parliament
4.1
Specific national initiatives to influence public attitudes
Support a series of local meetings (one in each local authority area) for policymakers
and other stakeholders to discuss the underlying values and principles of the review
and the main proposals
As with the implementation of the Children (Scotland) Act, it is important that this review is seen
as a ‘whole system’ issue. The Scottish Executive, together with COSLA, the Health Board
General Managers’ group and other national agencies, should support a programme of
structured meetings which bring together chief officers from, for example, housing, local
enterprise companies, corporate services, leisure services and education as well as social work
and health, alongside community leaders, people with a learning disability and families.
Continue to invest in the capacity of people with a learning disability and their families
to act as leaders and educators.
Currently this is happening to a limited extent with Partners in Policymaking and through
initiatives by People First and by ENABLE. SHS has also supported and trained a small group
of people with a learning disability to work as disability equality trainers and has linked them in
with the wider network of disability equality trainers in Scotland. Some service providers such
as Key Housing have invested in tenants committees. A focused and sustained approach is
needed to make the most of the capacity in the movement.
21
Support joint local training initiatives which focus on values and attitudes and which
bring together staff from specialist service providers, people with a learning disability
and families
While the main responsibility for these initiatives should rest with local authorities, the Scottish
Executive should provide some central support to these programmes such as a grant to develop
materials and train local trainers (as for example happened with the Children (Scotland) Act
implementation).
Invite and support awareness-raising initiatives which involve a partnership with
mainstream service providers and employers
There are many opportunities, for example in the context of the Disability Discrimination Act,
the New Deal for Disabled People, the Children (Scotland) Act, for mainstream service
providers and employers to develop awareness-raising initiatives relating to people with a
learning disability. For example, the EOC is currently running a programme with LECs and
local authorities to raise awareness of equal opportunities among small to medium enterprises in
Central Scotland. It is important to ensure that learning disability issues are addressed as part of
these wider disability-related initiatives, and a specific programme of activity here could have a
significant leverage.
This might involve for example the production of audio-visual materials and the development of
interactive training sessions for specific audiences, some with a specific ‘learning disability’
content, some with a more generic content. However, any such initiatives are only likely to
work if they involve a partnership with and contributions from the mainstream service providers.
Given the evidence on harassment and bullying, the Police might be one priority for such an
initiative.
This programme should build on the work undertaken as part of the current National Disability
Campaign which is aimed particularly at business people (particularly SMEs), the general public
and disabled people.
Review the current provision of disability-related education in the primary and
secondary school curriculum, and ensure that it is both relevant and effective in the
way it tackles learning disability issues
Again, this is part of a broader disability and equal opportunity issue; and again, it makes sense
to develop and produce materials and approaches on a national basis than to leave small local
projects to reinvent the wheel. A Scottish equivalent of the Disability Equality in Education
project should be funded.
4.2
Presentation and implementation of the review
22
The review should be presented as a social or civic reform rather than a service
reform.
The review should emphasise the position of people with a learning disability as equal citizens
who should enjoy a similar quality of life to other people in Scotland but who in fact form a
seriously disadvantaged minority group in terms of housing, employment and participation in
society.
The implication of this, however, is that the presentation, debate and implementation of the
review should be seen as a concern of several ministries and committees, not just or even mainly
health and community care.
Positive inclusive language should be used
The review must use the language of social inclusion rather than the language of care and
treatment, so that people with a learning disability are seen as at risk of exclusion from society
rather than sick and dependent.
Where the review does address service issues, the language should emphasise what it would
take for someone to get a life rather than emphasise their dependency - for example ‘require
personal assistance’ rather than ‘in need of care’. Phrases such as ‘maximise potential’ should
be avoided as they imply that people are currently unfinished and inadequate and need
professional refurbishment before being accepted as equal people. Words such as ‘severe’ and
‘profound’ carry negative connotations which reinforce low expectations, where words and
phrases such as ‘considerable’, ‘significant’, ‘extensive’, ‘high support needs’ convey the same
information without additional overtones.
Some people feel aggrieved at these efforts to use more positive and inclusive language. They
may feel that people’s real needs are being disguised and glossed over, and that the people who
need the most support are being left out. It is essential to focus attention and resources on
people who need most support. However, this is not best achieved by using language which
emphasises people’s dependence and difference. People with a learning disability are more
likely to get high quality services if they are seen primarily as valued citizens than if they are seen
primarily as not like the rest of us.
We all need support from other people from time to time: help to do something we have never
done before, someone to stick up for us, practical help with household tasks, personal help with
looking after ourselves, someone to share activities, someone to listen to us, someone to keep
us out or get us out of trouble. The difference is that some people with a learning disability need
this support more intensely, in more areas of their life and for longer periods.
The review and associated documents should also be sensitive to issues of age, gender and
culture. People with a learning disability are in danger of their ‘learning disability’ label
23
obscuring every other aspect of their identity, and young people and adults with a learning
disability are still often seen and portrayed as childlike or even ‘really’ children. The review
document should emphasise that people with a learning disability come from different cultural
backgrounds, are men and women, young and old - and not a homogeneous group.
The section concerning children and young people with a learning disability should be clearly
placed in the context of the Children (Scotland) Act, the National Childcare Strategy and
current educational reforms. The language should be consonant with the language of current
documents about children’s services. The section concerning adults should be correspondingly
adult, emphasising people’s adult status.
The image of the review should be serious and adult, as well as accessible
The presentation and accessibility of government documents has improved enormously in recent
years, and this review has made great efforts to reach a wide range of people through
roadshows, meetings, consultative documents and the website. The main review document and
its summaries, audiotapes, and even videos will be circulated very widely.
Press releases and press conferences can send powerful messages about the essence of the
review and about who people with a learning disability are. The first few words of the report
tell the general public why a national review was needed - was it because people needed more
‘care’, or was it because people were not getting a fair deal? Was it because carers were
suffering a burden or was it because people were missing out on opportunities?
The disadvantages of using photographs specifically of people with a learning disability
outweigh the advantages. There are dangers of stereotyping and of presenting people with a
learning disability as ‘examples’ of a separate social group. One option is to use a street scene
from say Glasgow city centre or a mix of urban and rural scenes (schools, community settings,
churches, shops, workplaces) which may or may not include people with a learning disability.
If People First or similar representative organisations of families are to be involved in press
conferences alongside ministers, this can send powerful messages of partnership. However, any
such presentation would require careful preparation. The people concerned have to come
across as clear, knowledgeable and farsighted rather than as victims or good causes.
The title of the review document also requires careful thought. In the overcrowded policy
marketplace, it is important to give this review a memorable ‘handle’ which also gives a flavour
of the overall message. Perhaps simply the title ‘Putting People First’ would work.
4.3
Ongoing efforts to influence attitudes inside and outside
Establish a parliamentary commission
There are arguments for and against committees and ministers for disability. Areas of policy
such as housing, employment, education, childcare, economic and social regeneration, justice,
24
rural affairs, health and community development should all be responsive to disabled people.
Current EU thinkingi argues for disability policy to be mainstreamed within social policy. These
objectives are best achieved by building in a horizontal policy co-ordinating and initiating
mechanism rather than by establishing another vertical silo.
A Parliamentary Commission which brings together interested members from several
committees as well as other stakeholders (including people with a learning disability and family
members) would underline the argument that the review is about access, equality and inclusion
not just health and social care. The Commission would be able to ‘proof’ the implications of
other policies for their impact on people with a learning disability. It would keep learning
disability issues on the parliamentary agenda and provide a focal point for media enquiries and
for policy and practice information.
Employ people with a learning disability
As an employer, the Scottish Executive will already be committed to equal opportunities. This
is a good time to review the success of the Executive’s employment policies in relation to
recruiting and supporting people with a learning disability as employees.
There are many opportunities, particularly in connection with the new parliament, for people
with a learning disability to be employed in ways which bring them into contact both with MSPs
and with the general public. Anyone employed in this way should not be the subject of any
specific publicity, but simply treated as an equal member of staff.
Even so, this will send a powerful message to members of the public, journalists and others
about the Parliament’s commitment to diversity and equal opportunities. It will also put the
Executive in a strong position to encourage local authorities and the health service to improve
their performance as equal opportunity employers.
Keep making information accessible
Accessibility is a much wider issue than its role in influencing public attitudes. The review
website is a good start, but few people with a learning disability seem to have used the site as a
way to communicate. Thought should be given to improving internet access for people with a
learning disability and their families.
25
4.4
Suggestions for statutory and voluntary service providers
Statutory and voluntary service providers have a major influence on public attitudes because of
the way they design and provide services for people with a learning disability. Many of these
suggestions are simply part of a general shift towards inclusive services.
•
•
•
•
•
•
Run inclusive schools, playgroups, playschemes, colleges
Encourage good disability equality education in schools (including for school boards)
Recruit, retain and promote people with a learning disability as employees
Implement and maintain concessionary transport schemes
Actively promote accessible transport, housing, changing areas and public facilities
Ensure that housing services are responsive to people with a learning disability - offer
proper tenancies in ordinary housing, not in special schemes or hard to let areas
• Develop individualised alternatives to large residential institutions; avoid building
replacement facilities which segregate people and mark them out as different
• Develop alternatives to segregated day centres, including supported employment
• Build community roots, work sensitively with people in neighbourhoods, employ people who
can build local connections for people
• Review publicity material to make sure it sends the right message
• Stop making charity appeals to fund services for disabled people.
• Pay attention to the messages staff send when supporting people in the community
4.5
Suggestions for people with a learning disability and families
• Keep on expecting and demanding equal treatment for yourself and your family
• Get information, training and education so you know what is available here and in other
countries and so you know how to get things changed
• Don’t talk too much about what people can’t do, talk about what they want to do and what
they can do
• Be proud of who you are and what you have achieved
• Get involved in local politics, media discussions, the Parliament - and talk about general
issues, not just disability
• Stand up for each other
i
Mainstreaming disability policy within EU employment and social policy (1999) European Commission,
Brussels
26