'Disabled for life?' attitudes towards, and experiences of, disability in Britain
A hard copy of this report summary can be obtained by contacting Paul Noakes “(E-Mail: Paul.Noakes@dwp.gsi.gov.uk) ” or by writing to him at the Social Research Division, Department for Work and Pensions, 4th Floor, Adelphi, 1-11 John Adam Street, London WC2N 6HT'.
Research Report No. 173
By Ini Grewal, Sarah Joy, Jane Lewis, Kirby Swales and Kandy Woodfield
Introduction
The Department “for” Work and Pensions (formerly the D“f”EE) commissioned the “National Centre for Social Research” to undertake a study of people's attitudes towards, and experiences of, disability.
The aims of the research were to provide a picture of work and daily activities of disabled people, compared with non-disabled people, and to examine general attitudes to disability. The study also sought to examine people's experience of their disability, including discrimination and prejudice, across a range of different areas of life.
The research was commissioned to inform the Government's policies to promote equality by helping disabled people overcome the barriers which may exclude them from learning, employment and other aspects of society.
The research was done in two stages. The first qualitative stage consisted of 35 individual depth interviews and 7 discussion groups with disabled people, and 10 discussion groups with non-disabled people. The second stage was quantitative; a face-to-face survey was carried out with 2064 respondents, of which 47 per cent were disabled.
The definition of disability used in the survey and throughout the report is consistent with that used by the Disability Discrimination Act. A person must have (or had) a disability or impairment which has lasted, or is expected to last, at least a year, and substantially limits their ability to carry out day-to-day activities.
Background: characteristics and disabilities
At the time of the survey, there were an estimated 11 million people aged 16 or over who were disabled, according to the DDA definition in Great Britain, and 36 million who were not DDA disabled.
The disabled population had a much older age profile than the non-disabled population; 45 per cent of disabled people were over state pension age (SPA), compared with 15 per cent of non-disabled people.
The majority of those under SPA lived with another person as a couple (both disabled (57 per cent) and non-disabled (63 per cent)). For those over SPA, almost a third lived alone.
The majority of disabled and non-disabled people were homeowners (either outright or with a mortgage), but disabled people were more likely to be living in social housing than non-disabled people.
The vast majority of disabled people (87 per cent) had a current disability, whilst the remainder had a past disability. Problems with legs or feet, and the back or neck, were most commonly reported. Other common complaints were arm/hand problems (35 per cent), heart or circulation conditions (34 per cent), respiratory conditions (27 per cent), difficulties in seeing (18 per cent) and depression, bad nerves or anxiety (16 per cent).
Almost three fifths of disabled people reported three or more impairments.
Eighteen per cent of those with a disability classed themselves in good health, compared with 62 per cent of non-disabled people.
The onset of disabilities varied by age. For those over SPA, most (65 per cent) said their health problem developed since the age of 50. It was only amongst those aged under 45 that a significant minority said that their disability was present at birth (19 per cent) or whilst they were children (21 per cent)
Understanding disability
People held different beliefs about what constitutes a disability and whom disability affects. These, in turn, shaped their attitudes to disabled people and their lives.
People most often cited mobility problems, visual impairments and progressive illnesses as being disabilities. The most dominant images of disability were those in wheelchairs and blind people.
There were four commonly held beliefs about disability: disability relates to a physical impairment, is visible to others, leads to incapacity or dependence, and is a permanent unchanging state.
There were three principal ways in which these beliefs had been informed: the media, personal experience; and parental or familial influences.
A significant minority of people felt that the portrayal of disabled people in the media was negative. It was felt that the fictional media was less positive than factual media. The main reasons for this were that the media did not portray their normal lives, and that disabled people were not visible in the media.
The overwhelming majority of survey respondents reported knowing someone with a disability, though only a small minority had a partner with a disability.
Indirect contact with disability was a critical way of overcoming barriers between disabled and non-disabled people. Non-disabled people often believed that a disability adversely affected individuals quality of life, particularly those with little direct contact or experience of disability. In contrast, some non-disabled people with indirect experience were positive about the potential for living a full life with a disability.
Just under half (48 per cent) of disabled respondents in the survey classed themselves as disabled. The main reasons for rejecting the term was because they saw their health problems related to illness rather than disability, or that they were not ill enough.
The research identified three models of disability, which link to the theoretical medical and social models of disability. People in the different models varied to the extent to which they saw disability as physical, sensory or mental, or as incapacitating and permanent. They also varied to the extent to which they perceived disabled people as having negative or positive life experiences.
Disabling attitudes?
There is a continuum of attitudes towards disabled people. Inclusionary attitudes are characterised by a broad definition of disability and a positive view of disabled people's lives. Exclusionary attitudes are the opposite, focussing on rather than rejecting difference.
Disabled people reported they had experienced a range of these attitudes, and non-disabled people reported they had expressed or thought a mixture of these attitudes.
Hypothetical situations were used to explore how people react to disabled people. Most people were understanding about situations in which they encountered disabled people, or felt genuinely concerned or sorry for the disabled person in question. Very few reported feeling annoyed or irritated, though rather more said they could feel uncomfortable or embarrassed.
Most people were inclined to help out where they could or when asked in these hypothetical situations. However, situations involving a person with a mental health problem produced more mixed reactions than those involving physical or sensory impairments. There were few marked differences between disabled and non-disabled people. Older people were found to express more exclusionary attitudes.
The majority of both disabled and non-disabled people felt that prejudice against disabled people is common. Ignorance, a lack of awareness and fear of difference were cited as the primary reasons.
Disabled people experienced prejudicial attitudes in a number of ways. These included the assumption that disabled people cannot talk or think for themselves, assumptions made about their abilities, being rejected or avoided, verbal attacks or jokes, and even bullying.
In contrast to the widespread experience of prejudice, overt acts of discrimination were less commonly reported.
Personal and social lives
Experiences of family life varied between disabled people who had experienced onset early or from birth and those whose disability had later onset. Those with early onset, or who were disabled from birth, had mixed experiences of their early childhood and family life. Whilst some recalled a relatively stable and happy childhood, others had experienced chaotic or unstable family lives.
Growing up with a disability was recalled differently amongst those with early onset. One group recalled little or no impact on their experiences as a child. However, a second group did recall that being disabled as a child had affected their childhood years. Analysis suggested that two factors account for this difference. Firstly, self-image, those who thought of themselves as 'disabled' were more likely to recall disability as having affected their early years. This was in marked contrast to those who did not think of themselves as disabled when they were a child or who described being treated 'normally' or 'no differently' to their non-disabled friends or family. The second factor was the practical and emotional difficulties resulting from being a disabled child. Those who required ongoing medical treatment or personal care reported acute memories of their activities being constrained by their disability.
Transitions to independence were important for those with early onset or onset during their childhood. Although trouble-free transitions to adult independence were recalled the study found that young people with learning disabilities or complex care needs reported more practical and emotional barriers to leaving home.
Disabled people had experienced the full range of adult experiences. These included leaving home, forming new relationships, family formation, parenthood, divorce and bereavement.
Later onset (post-18) was reported as having an impact on people's personal and social lives. It was persistently reported as affecting family relationships, if only for a short time period. Social experiences were also affected by later onset, again sometimes only temporarily. Disabled people's experiences varied as to how they responded to the changes wrought in their social world. For some onset presented them with opportunities to try out new social activities and broaden their social circle. However, in other cases there was clear evidence of becoming socially isolated post-onset.
Education and training
Disabled people left full-time education at a much younger age than non-disabled people and, as a consequence, were less qualified. Over half (54 per cent) of disabled people had no qualifications at all compared with 28 per cent of non-disabled people. This partly reflects their older age profile.
The majority of disabled children (86 per cent) went to mainstream schools rather than specialist schools, and most of the mainstream schools did not have any special provision for disabled children.
Most of the respondents who were disabled during their school years had had a positive experience of mainstream education (63 per cent). Some people remembered thriving academically, forming friendships and generally having a sense of belonging.
A quarter (26 per cent) of all people who were disabled during their school years said they had had a negative experience of mainstream education. Some disabled people had had a lot of disruption during their schooling due to their disability (e.g. for hospital treatment). Others felt they struggled at school due to inadequate provision and facilities, or because of the attitudes of other people.
The main advantages of specialist schools discussed in the in-depth interviews were that they often provided one-to-one teaching and didnt make children feel different to their classmates. However there was much debate about the merits and disadvantages of the two forms of schooling. Some felt that the lack of experience of each other was the cause of prejudice.
Non-disabled people were twice as likely to have studied at higher education than disabled people.
Disabled people in the in-depth interviews had experience of rehabilitative education and training. Although not “all” such training programmes were positively received the programmes were generally praised for giving people the chance to learn new skills, meet new people and regain or improve self-confidence.
Overall both disabled and non-disabled people felt that the education system had improved regarding the needs of disabled students with more disability-friendly designs meaning improved accessibility.
Fourteen per cent of both disabled and non-disabled people had taken part in a training programme in the past, the most common programme being youth training apprenticeships.
The majority of disabled employees did not feel that their disability limited them from taking part in training at work and most (73 per cent) thought they had the same training opportunities as non-disabled employees.
Employment status
Overall, 44 per cent of all disabled people were economically active, compared with 79 per cent of non-disabled people. Economic activity rates were lowest for those aged 55 or over, and for those living in the social rented sector.
For workers, there were no marked differences between disabled and non-disabled people in terms of their industry sector, but disabled people were less likely to be in professional occupations, and more likely to be in skilled or unskilled occupations.
The majority of men were working full-time, though 55 per cent of disabled women and 40 per cent of non-disabled women worked part-time. The majority of people worked part-time because of domestic responsibilities, but about a third of disabled people said it was because of concerns about their health.
About half of respondents had some kind of special working arrangement, of which the most common was flexi-time. There were no differences between disabled and non-disabled respondents.
In terms of those economically inactive who had not looked for work in the last 4 weeks, forty-three per cent of disabled people and a third of non-disabled people said they would like a job, though for disabled people this should be seen as an aspirational response.
Most economically inactive people had worked in the past, but three-fifths of economically inactive disabled people had not worked for five years. Non-disabled respondents had worked more recently; half of non-disabled people had worked in the previous two years.
Over half (58 per cent of disabled and 68 per cent of non-disabled people) had been in work immediately prior to their current spell of unemployment. The main reason for leaving this previous job was that they were made redundant or they resigned. About 15 per cent of disabled people said they gave up the previous job for health reasons.
In terms of those economically inactive, the majority of disabled people said they were not working because of disability. For non-disabled people, it was mainly because they were looking after the family or home or in full-time education. Very few were looking for work.
Disability and employment
Forty-one per cent of disabled people were in work. Twenty-six per cent said they were able to do some work or expected to work in the future. The rest (33 per cent) said they did not expect to work in the future.
Most of those that worked or could/expected to work said their disability had an effect on the type of work they could do. Sixty-three per cent said it affected the kind of work they could do, and 50 per cent said it affected the amount of work they could do. The most common limitation was not being able to do physical work.
Seven in ten people in employment with a disability said their health problem did not affect the number or pattern of hours worked.
Despite the difficulties with work, people were keen to work because of its central importance. Not working could lead to social isolation and financial difficulties.
Perceptions of work readiness were affected by: the nature of the disability or impairment; level of adaptation or support required and available; the amount of appropriate rehabilitation/training that was needed or had been received; and perceptions of whether employment opportunities were available to disabled people.
In practice, a minority of disabled people (13 per cent) had special working arrangements specifically because of their disability, but many took advantage of arrangements available to all employees, such as flexi-time.
Most people were in work when their disability began to affect them. Three in ten of those currently working had changed their job completely or in part to accommodate their disability. However, most of this group felt that their current job was better than the one they had when their health problem began, though this could be related to natural career progression; almost one in five (19 per cent) felt that their current job was worse.
The majority of disabled people (88 per cent) had no difficulties travelling to work. Those who could drive and had their own transport generally experienced fewer problems than others who had to rely on public transport or the help of friends and family.
There were mixed views about the impact of disability on work. Employers and colleagues differed in their response to disabled people in the workplace. Some people found employers to be very supportive, accommodating and flexible, whilst others found it difficult to get the necessary assistance or to be given the right type or level of work. Those with more severe disabilities were more likely to report difficulties dealing with employers.
Seventeen per cent of disabled people said they had experienced actual discrimination in the workplace because of their disability. In addition, 37 per cent of respondents said, when prompted, they had experienced some kind of prejudice or unfair treatment.
In particular, there was evidence that disabled people frequently believed they had encountered prejudice in the application process, and many people (46 per cent) believed that employers were not as likely to employ people with disabilities as people without them. Less than three-fifths (57 per cent) of people always told potential employers about their health problem.
Accessing goods, services and support
The use of care or personal support services was prominent amongst older disabled people and those with mobility problems or chronic medical conditions. People felt information on such services was poor and found it difficult to establish what support was available for them in their area. However, in general, those who had received assistance were positive about their experiences.
There were mixed personal attitudes towards accepting or rejecting financial assistance among disabled people in the qualitative interviews. Those who accepted state assistance either felt they were eligible for it (for example felt that they had worked before and paid taxes) or they believed it was fair for society to offer assistance to people facing barriers. Refusal to claim benefits was often linked to personal pride and the wish to be independent.
The benefits system was seen to be complex and difficult to access. There was a general lack of accessible information and the application process was complicated, and lengthy. In addition, the need to prove incapacity was felt to be demeaning.
Those interviewed had experienced a wide range of medical services and while some felt the medical support they had received was excellent others were less satisfied. People were generally aware of what was available and knew how to access the medical and healthcare services. Long waiting lists for medical treatment seemed to be tolerated.
Experiences of medical and healthcare services were varied for a mixture of reasons. The key factors affecting disabled peoples experience of the medical service were: staff attitudes and awareness of disability; and the quality of the service provided.
One in five survey respondents had experienced difficulties accessing goods and services as consumers and most of them said the problems encountered were directly related to their disability. The main types of difficulties experienced were: physical barriers to access goods, services and leisure venues; the denial of entry into enter buildings; and the accessibility of public transport.
Of the respondents that had experienced difficulties accessing goods and services, only just over a quarter had complained to a service provider about the poor service they had received. Furthermore, very few that had complained were satisfied with the response they got (two out of ten).
Achieving social inclusion
There was overwhelming support for greater efforts to achieve equality for disabled people, though there was some misunderstanding and debate about what equal rights actually means in practice.
Significant proportions of people were aware of the Disability Discrimination Act (DDA). Forty-four per cent of DDA disabled people and 53 per cent of non-DDA disabled people said they had heard of it. Awareness of the Disability Rights Commission (DRC) was much lower.
There was strong support for the aims of the DDA and DRC, and the majority of people felt it would at least be fairly successful. However, participants expressed concerns that both the DDA and DRC did not have enough financial resources or legal stature to achieve their aims, and that they were not geared up to tackling the root causes of discrimination.
About a fifth of people had heard of or seen the See the Person or What have you got to offer? campaigns. Government support for these campaigns was welcomed, though some people were confused by the See the Person campaign, and were unsure that it would be successful.
Although the vast majority of people felt that the position of disabled people had improved in the past 20 years or so, people did believe that strong attitudinal and structural barriers remained. The key to a more inclusive society was to break down these barriers.
The key strategies for change included: improved education about disability; improved media representation and publicity; improved physical access, transport and financial support; strengthened legislation; and increased integration of disabled and non-disabled people.
The government was seen as the prime agent for ensuring this change though a wide range of other organisations were also seen as responsible. Effective dialogue between the government, disability groups and other key social institutions was seen as fundamental to any future progress.
Publication details:
Ini Grewal, Sarah Joy, Jane Lewis, Kirby Swales and Kandy Woodfield Disabled for life? attitudes towards, and experiences of disability in Britain, DWP Research Report No. 173, Leeds CDS (£46.00)