Public perceptions and attitudes towards disabled people: a thematic report

Question 1

Executive summary

Accepted Answer

This report presents a thematic review of 69 research studies exploring public perceptions and attitudes towards disabled people in the UK. These materials were identified in a systemic review commissioned by the Cabinet Office’s Disability Unit (DU) in 2021. The review was conducted by the Centre for Disability Studies at the University of Leeds, and Disability Rights UK.

The research questions for this evidence review are:

What attitudes, stereotypes, assumptions (both positive and negative) towards disability do disabled people experience?
What other attitudes, stereotypes, assumptions (both positive and negative) do disabled people experience based on their other identities?
What are the impacts of these attitudes, stereotypes and assumptions on self-identity and feelings of inclusion in society?
What are the strategies and services/support that promote awareness of the capabilities and contributions of disabled people in society and/or impact widely on disabled people’s choices and chances in life, and on their everyday life experiences?

Methodology

The systematic review included 77 resources relating to public perceptions and attitudes towards disabled people. Eight were excluded for reasons such as full text versions being unavailable. This led to 69 resources being reviewed for this report. The methodology took a 2-phased approach to reviewing and describing the themes.

Phase 1

Data abstraction: sources were read and the data from the findings section were placed in a master document ready for analysis.

Demographic data was checked to establish whose lived experiences were being described. This was to make sure they were taken directly from the disabled person.

Quality of the research was assessed. Its methodological integrity was evaluated using concepts associated with trustworthiness.

Phase 2

Intertextual thematic analysis was consistent with a grounded approach. This involved a cycle of open coding to help make insights into the content and spread of the extracted data.

This was followed by a cycle of axial coding, which involved organising codes into categories. The final stage involved selective coding, which is the process of determining emergent themes which are the focus of the report.

Summary of findings

This research report provides a detailed review of lived experience evidence on attitudes towards disability, their impact and potential strategies to promote positive change. Findings include the following.

Society’s attitudes towards disability are mainly negative, often focusing on impairments and limitations. This leads to infantilisation, pity, ridicule, and hierarchies of desirability.

Disabled people frequently experience stigma, including from family and healthcare professionals. This can result in mental health issues, social isolation, and challenges in self-identity.

Intersectionality influences stigma. People’s experiences vary based on characteristics like gender, age, ethnicity, and religion. These often make negative perceptions worse.

Negative societal attitudes affect disabled people’s self-perception. This leads to forced dependency, not disclosing impairments, avoidance of help, loneliness, and internalised stigma.

Strategies to improve societal attitudes include:

disability awareness training
positive media representation
trust-building with professionals
empowering disabled individuals to express their identities

Effective services involve better representation, self-advocacy groups, and community networks that support inclusion and recognise the contributions of disabled people.

Overall, the report highlights the importance of:

shifting societal narratives towards recognising disabled people’s capabilities
developing understanding
reducing stigma to enhance inclusion and wellbeing

It also notes research limitations and identifies gaps. These include the need for more diverse and co-produced studies to better inform effective interventions.

Question 2

Introduction

Accepted Answer

This report presents selected findings from a wider review of the evidence on disabled people’s lived experience in the UK. This review was commissioned by DU and conducted by the Centre for Disability Studies at the University of Leeds and Disability Rights UK in 2021.

The main aim of this report is to document public perceptions and attitudes towards disability. This includes how disabled people experience these perceptions and attitudes. The report also shares strategies and services designed to:

challenge and change negative public perceptions and attitudes
support disabled people to take part in society

The findings are based on a targeted review of 69 research reports published between 2010 and 2021. These reports focus on the lived experience of disability in relation to public perceptions and attitudes. Lived experience research aims to give a better understanding of the issues faced by disabled people and people with health conditions.

The Equality Act (2010) specifies that disabled people should be protected from experiencing discriminatory treatment in society, for example, within employment and education.^{[footnote 1]} The United Nations Convention of the Rights of Persons with Disabilities (UNCRPD)^{[footnote 2]} article 8 states that countries such as the UK should commit to:

raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities
combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life
promote awareness of the capabilities and contributions of persons with disabilities

The UNCRPD states that these commitments should be met through:

effective education and training
public awareness campaigns promoting positive representations of disabled people, including recognition of their rights, skills, and contributions to society^{[footnote 3]}

These commitments are consistent with other global declarations on human rights, such as Goal 10 of the UNESCO Sustainable Development Goals.^{[footnote 4]} This advocates for reducing inequalities within and between countries, such as through strategies that promote equal opportunity and prevent discrimination.

Despite these policies as well as national and international commitments, research exploring attitudes towards disability reveals that there are variable perceptions about how disabled people are perceived, and how disabled people experience life. For example, from an international perspective, the United Nations (UN) Disability and Development Report^{[footnote 5]} (UN 2018: 18) highlights how ‘negative attitudes, stigma and discrimination’ associated with disability is a fundamental issue in making the exclusion of disabled people in society worse in several ways.

Healthcare is one example, with the UN report describing how negative attitudes can compromise fair access to healthcare services, ‘as health professionals often have little experience interacting with or providing services to persons with severe and/or complex disabilities, or have negative, stigmatising attitudes towards these patients’ (57). Healthcare experiences may be particularly problematic for people with mental health support needs (209). Education is another example, as ‘too many persons with disabilities continue to be denied this fundamental right due to numerous barriers and obstacles to accessible education, including prejudice and discrimination against those with disabilities’ (73). Safety is the third example, as disabled people may be at greater risk of experiencing abuse or violence (247), as well as being a victim of crime (249), due to negative attitudes associated with disability.

Experiences of disabled people in the UK might highlight a similar problem regarding negative attitudes. Disabled people have shared how negative attitudes can deeply affect their participation in everyday life. They describe concerns about experiencing harassment or insults when in public.^{[footnote 6]} This report aims to provide further evidence on public perceptions and attitudes towards disabled people in the UK, and the stigma and discrimination they experience.

The thematic review is based on evidence on the lived experience of disabled people in the UK published since 2010. The research questions for this research are:

What attitudes, stereotypes, assumptions (both positive and negative) towards disability do disabled people experience?
What other attitudes, stereotypes, assumptions (both positive and negative) do disabled people experience based on their other identities?
What are the impacts of these attitudes, stereotypes and assumptions on self-identity and feelings of inclusion in society?
What are the strategies and services/support that promote awareness of the capabilities and contributions of disabled people in society and/or impact widely on disabled people’s choices and chances in life, and on their everyday life experiences?

This thematic review gives us a better insight into the lived experience of disabled people from the qualitative evidence. It also discusses the gaps and limitations of the evidence base.

Question 3

Methodology

Accepted Answer

DU commissioned an evidence review to be conducted by the Centre for Disability Studies at the University of Leeds in partnership with Disability Rights UK. The aim was to establish the existing evidence base on the lived experience of disabled people in the UK. The review focused on research in the UK, at national, regional, or local level. It used systematic searching of bibliographic databases and targeted searching of the grey literature, including research led by disabled people’s organisations. Around 15,000 potential sources were identified. After thorough review, around 1,500 appropriate sources were sorted into 13 policy relevant categories for further review. This base of evidence was then mapped thematically.

This report further examines this review, focusing on papers describing public perceptions and attitudes towards disabled people, as well as disabled people’s own experiences of stigma and discrimination. The commissioned systematic review included a total of 77 resources which were published between 2010 and 2021. Eight of these resources were excluded from this report due to reasons such as being unable to locate full text versions required for the review. This led to a total of 69 resources being reviewed for this report (65 peer-reviewed journal articles and 4 reports).

The sources presented in this paper were thematically reviewed. The aim of a thematic review is to identify and describe the content of research evidence reported in publications. Unlike systematic reviews, which typically aim to perform statistical meta-analyses to calculate the strength of the evidence, a thematic review is qualitative and descriptive in nature. It aims to summarise the main topics discussed by research participants in the studies being reviewed.

The methodology underpinning this report took a 2-phased approach to reviewing and describing the themes. The first phase involved data abstraction, where the papers were read and the data from the findings section were put in a master document ready for analysis. This phase also looked at the demographic data reported in the methodology section to establish whose lived experiences were being described. This was to make sure it was taken directly from the disabled person. It also examined the quality of the research by looking at its methodological integrity by using concepts associated with trustworthiness.

The second phase involved intertextual thematic analysis and was consistent with an inductive or grounded approach. This involved a cycle of open coding to help crystallise insights into the content and spread of the extracted data. This was followed by a cycle of axial coding, which involved organising codes into categories. The final stage involved selective coding, which is the process of determining emergent themes which are the focus of the report.

This report uses the following disability terminology as described in DU’s Disability Workforce Reporting documentation:^{[footnote 7]}

Disabled people: The Equality Act (2010) defines disabled people as people with physical and mental conditions that have a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities. In this consultation, ‘disabled people’ also includes people with chronic illnesses that have a substantial and long-term impact on everyday life, and people who identify as neurodivergent.

Neurodiversity: Neurodiversity recognises diversity in people’s brains and how brains and minds function. People who are neurodivergent include people with autism, Asperger’s syndrome, dyslexia and dyscalculia.

Protected characteristics: The Equality Act (2010) sets out a number of characteristics that it is unlawful to discriminate on the basis of. These characteristics are: age, disability, gender reassignment, marriage and civil partnership, pregnancy, race, religion or belief, sex, and sexual orientation.

Question 4

Question 1: Attitudes towards disability

Accepted Answer

Research question 1:

What attitudes, stereotypes, assumptions (both positive and negative) towards disability do disabled people experience?

In this section we summarise findings about society’s attitudes, stereotypes and assumptions about disability and disabled people. The studies present a largely negative view of disability. Stigma towards disability is experienced across different social spaces, with studies reporting difficulties in school and at work, in the media, and sometimes with family members and healthcare professionals.^{[footnote 8]} But not all attitudes towards disabled people are negative, and some studies report how disability is an asset, particularly in the healthcare and volunteer sectors. Disabled people such as Paralympians are also sometimes seen as heroes.^{[footnote 9]}

Deficit-based views of disabled people: Focusing on the negative

The studies reviewed for this report described how disabled people felt upset and frustrated by society’s ongoing negative views of them. This included misconceptions about their impairments and the focus on disabled people’s inability, rather than their talents and abilities.^{[footnote 10]}^{[footnote 11]}^{[footnote 12]} For example, research has reported that people with dementia feel that society judges them negatively by focusing on their cognitive decline, rather than celebrating their remaining cognitive ability and supporting their independence as much as possible.^{[footnote 13]} People with dementia were also concerned about being labelled a ‘fool’ due to their cognitive impairments. They were disturbed by the lack of empathy from family, friends, and clinicians, with some seeing dementia as a ‘death sentence’.^{[footnote 14]}^{[footnote 15]} Research suggests that people with dementia in the UK experience higher levels of perceived and actual stigma than other countries, including Italy and Poland.^{[footnote 16]} In one study, cancer patients reported having to provide negative demonstrations of personal deficiency and incapacity when trying to prove eligibility for benefits.^{[footnote 17]} But the evidence highlights that the reality of the lived experience for disabled people can differ greatly.

Representations of disability in the media

Negative images of disabled people are perpetuated by the media. For example, one study states that language used to describe people with dementia was obstructive and includes ‘sufferer’, ‘demented’, ‘crazy’, and ‘not-all-there’.^{[footnote 18]} In another study with 23 cancer patients whose jobs and careers were disrupted by treatments, they describe being called scroungers or workshy when they are not able to sustain their employment.^{[footnote 19]} Reports in social media can add to the stigma – for example, of people with chronic fatigue syndrome and myalgic encephalitis. This is particularly true in cases where celebrities suggest that they have successfully ‘recovered’, which dismisses the true nature of the impairment or health condition.^{[footnote 20]}

Infantilising disabled people

The evidence shows that disabled people have often been infantilised or treated in a negative or child-like manner. For example, one study revealed that people with dwarfism often encounter discrimination including strangers taking unauthorised photographs of them.^{[footnote 21]} Similar experiences were reported by the autism community who reported resentment and frustration toward family members over the perceived infantilisation they experience. Parents who might feel the need to protect their children risked denying them opportunities to engage in activities like cooking.^{[footnote 22]} These assumptions can lead to autistic people wanting to reject identities forged by risk-averse family members. Further research suggests that people with mild intellectual impairments and cognitive impairments such as dementia have fewer opportunities to take part in desired activities, such as cooking or visiting friends, because carers are concerned about their safety and well-being.^{[footnote 23]}^{[footnote 24]} Other research described how people with Down’s Syndrome were frustrated at how non-disabled people would take the responsibility for speaking for them or doing things on their behalf.^{[footnote 25]}

Low expectations of disabled people

Research shows that disabled people can experience low expectations regarding their future life chances. For example, some parents describe how they modify the expectations they have for their children.^{[footnote 26]} Young people with developmental co-ordination disorder have reported being teased by their siblings who suggest that they will not find a job after school because of their impairments.^{[footnote 27]}

Objects of pity

Research describes how non-disabled people sometimes view and treat disabled people with pity. This means that non-disabled people can feel sorrow towards disabled people, who they think are suffering and experiencing misfortune. While disabled people want to be treated with compassion, pity can position disabled people in a negative light, as people who are helpless and require charity from others.^{[footnote 28]}^{[footnote 29]} The impact of COVID-19 on disabled people was highlighted in Inclusion London’s Social Care survey, with 60% stating they struggled to access food, medicine and necessities. The research also revealed that disabled people felt like objects of pity when they were described as ‘vulnerable’, which diverted attention from removing barriers and promoting independence.^{[footnote 30]}

Object of ridicule

Disabled people who experience stigma report that their impairment comes to represent their whole person. They experience being devalued because of public perceptions of their bodily differences.^{[footnote 31]}^{[footnote 32]} For example, people with dwarfism have conventionally been approached as diminutive and humorous, rather than respected as members of society.^{[footnote 33]} Negative attitudes towards disability results in people trying to ‘hide’, ‘mask’ or ‘camouflage’ their impairments, if possible, to avoid stigma.^{[footnote 34]} The research literature suggests that labels have the potential to create undesired identities. For example, children with speech and language impairments reported being verbally bullied by other children. This includes being called ‘dumb’, ‘special’, ‘sick’ ‘handicapped’ and ‘sad’, which leads children to feel ashamed of their impairments.^{[footnote 35]}

Negative attitudes towards disabled people can also be demonstrated through disabled people experiencing bullying and assault.^{[footnote 36]} Research describes how disabled people may feel unsafe through members of the public invading their personal space. For example, people with dwarfism reported having to navigate unsolicited photographs or hostile interactions from others.^{[footnote 37]} Other research carried out with teenagers with developmental co-ordination disorder highlights how non-disabled students often mock or mimic their behaviour in school, and threaten physical violence.^{[footnote 38]} Similar reports exist from people in employment, with disabled people experiencing workplace practices in which they are devalued.^{[footnote 39]}

Hierarchies of difference and desirability

While the research presents an overall negative view of disability and disabled people, some studies suggest that certain groups and impairment types experience more stigma than other groups. This is partly due to the perception and impact of diagnostic medical labels. Such commonplace perceptions do not acknowledge that a label can cover a wide range of abilities, overlooking the people concerned and ignoring their contexts.^{[footnote 40]} Disabled research participants felt that certain labels were associated with higher forms of stigma, resulting in a hierarchy of labels. For example, people experiencing mental health problems described how terms like ‘psychosis’ and ‘schizophrenia’ were perceived by the general public to be worse than labels such as ‘depression’. People labelled as psychotic or schizophrenic were perceived to be ‘dangerous’ and ‘unpredictable’, and experienced lower levels of sympathy from the general public and clinicians alike.^{[footnote 41]}^{[footnote 42]}^{[footnote 43]}^{[footnote 44]} The stigma attached to labels can shape the preference of people seeking help. For example, some parents seeking diagnosis for their children prefer the label Asperger’s to autism since Asperger’s is perceived to carry less social stigma.^{[footnote 45]} A diagnosis of mild cognitive impairments can be preferable to some families, but remains problematic for individuals, owing to widely held assumptions that this is equal to a diagnosis of dementia.^{[footnote 46]}

Self-perception

The literature discusses the attitudes, stereotypes and assumptions towards impairment that disabled people experience. But an important part of this discussion is the way in which disabled people perceive themselves as disabled, and this can be shaped by negative public perceptions of disability. For example, research shows how disabled people may choose to reject disability labels, such as children with speech and language impairments not wanting to be treated differently because of their condition. Some children report not wanting to attend specialist classes in school such as language classes, and not wanting to be associated with other children who attend segregated settings.^{[footnote 47]}^{[footnote 48]}

Other disabled people may choose to reject disability labels out of a desire to appear ‘normal’.^{[footnote 49]} For many autistic people in adulthood, negative past experiences translate into uneasiness in the present, which manifests as a need to change themselves as ‘faulty’ beings.^{[footnote 50]}^{[footnote 51]} A common societal view of autistic people is that they are at fault and require repair.^{[footnote 52]} The message that autistic people get is that they should change to fit ‘normal’ society which aligns with the medical model view of disability.^{[footnote 53]}^{[footnote 54]} Similarly, disabled people may choose to ignore or disregard associations with ‘sickness’ in the hope of trying to return to a ‘normal’ state of health.^{[footnote 55]}^{[footnote 56]} For example, some people with chronic fatigue syndrome (also known as myalgic encephalitis) report that stigma can be as disabling as the condition itself.^{[footnote 57]} Young disabled people see their bodies as ‘fixable’ and ‘flawed’, as ‘unfinished’ and potentially never ‘ordinary’ because of society’s view of disability as ‘damaged’ and ‘different’, and as something that can be ‘corrected’.^{[footnote 58]}

Familial and ‘courtesy’ stigma

While some studies focus on disabled people’s experience of stigma from the general public, others focus on disabled people’s family experiences, and how families of disabled children experience stigma. Families are described in one particular study as feeling a sense of shame at the thought that somebody in their family might be disabled.^{[footnote 59]} For example, research participants of African descent have been described as fearing being ‘contaminated’ by a family member experiencing mental illness, leading to the person being pushed away from others and contact being withdrawn.^{[footnote 60]} Similarly, some families fear that they will be blamed if a family member is diagnosed with mental ill health.^{[footnote 61]} Because of this, people who experience mental health problems have reported that relatives were reluctant to discuss their diagnoses, and even downplay or deny the existence of mental health problems altogether.^{[footnote 62]}^{[footnote 63]} The silencing of people experiencing mental health problems leads them to feel shame, an emotional separation from the family, isolation, a loss of aspiration, and a decline in help-seeking behaviours.^{[footnote 64]}^{[footnote 65]}^{[footnote 66]}

Stigma from healthcare professionals

Disabled people sometimes reported difficult experiences of healthcare, with healthcare professionals having negative attitudes towards those in their care. This contributes to some disabled people experiencing discrimination openly within the healthcare setting.^{[footnote 67]} Disabled people may be afraid to engage with mental health services because of the belief that they will lose control of their treatment and receive poor quality therapeutic care.^{[footnote 68]} One study reflected that low engagement with medical services for people experiencing poor mental health may reflect the quality of the services likely to be offered.^{[footnote 69]}

In addition, people with dementia reported being surprised and dissatisfied with how they were treated by healthcare professionals – specifically, their lack of understanding and empathy.^{[footnote 70]} They felt healthcare professionals perceived dementia as a ‘death sentence’, reinforcing the view that dementia was an incurable progressive condition by pushing for advanced care plans and power of attorney, and creating a will, instead of talking about how to live a good quality life.^{[footnote 71]} Studies also show that some people with chronic fatigue syndrome report entire GP practices as not believing that their condition exists, with many medical professionals being very suspicious and their needs not being taken seriously.^{[footnote 72]}

Positive accounts of disability: disability as an asset and disabled people as heroes

The majority of studies report negative perceptions towards disability and disabled people. But there are several studies that report on the positive side of disability. For example, in certain volunteer and employment spaces, being disabled can be seen as an asset. Disabled people reported that their lived experiences and understanding of disability was valued by certain groups and organisations. People with progressive neurological conditions reported being employed by local health organisations and health charities, because of their expert knowledge and lived experience of disability, and their compassion and skills in supporting others.^{[footnote 73]} Another positive view is the view of disabled people as heroes. For example, Paralympians are proud of their achievements and are seen as champions, and as people who have overcome adversity to achieve greatness. But such heroism is also described as tainted, or intertwined with a negative perception of disability and disabled people. This is because Paralympians are still identified as disabled athletes rather than just athletes, despite their athletic achievements.^{[footnote 74]}

Question 5

Question 2: Attitudes towards other identities

Accepted Answer

Research question 2:

What other attitudes, stereotypes, assumptions (both positive and negative) do disabled people experience based on their other identities?

In this section we summarise research themes about the ways in which ‘other’ identities such as ethnicity, gender, age, and religion, interact with attitudes towards disability and disabled people. The research suggests that disabled people’s experiences of stigma is shaped not just by public attitudes towards disability, but also by attitudes and stereotypes towards a range of protected characteristics. It is difficult to untangle the many identities that disabled people embody and to determine the extent to which somebody is experiencing stereotypes and assumptions based on one identity alone. But there are themes in the research that suggest that disabled people’s experience of public attitudes is shaped by how different identities intersect.

Disability and gender

The research reviewed for this report suggests that many disabled people’s experiences are shaped by society’s attitudes and stereotypes about gender. For example, research describes how disability is related to a perceived lack of beauty, and this relationship is potentially experienced differently according to a person’s gender. In one particular study, disabled men describe being perceived as not being able to fulfil gender norms of strength and athleticism, and therefore are viewed as undesirable.^{[footnote 75]} Disabled women, on the other hand, often contend with the ‘masculine gaze’ and having to conform to society’s expectations. This was found to be particularly problematic for disabled women including women with learning disabilities, where their disability is sometimes equated with disfigurement and undesirability, creating hierarchies based on bodily aesthetics.^{[footnote 76]}

Neurodivergent people also report challenges with gender and societal expectations about how people are supposed to behave based on their sex or gender. For example, research with autistic girls and women demonstrates the challenges that some people face when making friends, sustaining friendships and generally ‘fitting in’, particularly when negative attitudes towards autistic people exist, leading to social rejection (for example, in schools^{[footnote 77]}). Autistic girls and women taking part in research describe feeling pressured to dress and act in ways that conform to gender stereotypes. This can lead autistic females to mask, camouflage, or hide their autism, and make friends with males who are perceived to be easier to socialise with.^{[footnote 78]} Attitudes towards autistic girls and women are sometimes understood in terms of gender norms, and such norms are a binary cultural concept that see gender and sex as the same and consequently reduce sex and gender to male and female. But experiences reported by parents and young people suggest that some autistic people either find it difficult to behave in ways which conform to society’s expectations around femininity, or choose to explicitly reject this.^{[footnote 79]}

Attention to disabled men’s experiences of stigma has been growing in recent years. Some researchers suggest that men with learning disabilities may experience greater stigma than women with learning disabilities.^{[footnote 80]} In particular, men and boys who face mental health issues are likely to have many challenges in other areas of life, for example, in employment, housing and relationships. It is possible that public perceptions and attitudes towards men with mental health problems are more negative than those concerning women, due to such men being viewed as potentially violent.^{[footnote 81]}^{[footnote 82]}

Disability and age

The evidence shows that disabled people’s experiences of stigma and gender can be connected to age. For example, research involving children with physical impairments has described how children are concerned with the ways in which their impairments limit the extent to which they can play at a friend’s house or take part in games at school.^{[footnote 83]} Research exploring the relationship between old age and disability has revealed that some people who are older do not see themselves as disabled.^{[footnote 84]}^{[footnote 85]} The recognition of what may be natural processes associated with ageing are contrasted with what might be an unexpected and feared decline for some people. Older people report worries about maintaining their pathway towards death and the wish to avoid a painful, embarrassing state of dependency in later life in research focussed on their mental well-being and capacities.^{[footnote 86]}^{[footnote 87]}

Disability, ethnicity, and religion

The public’s understanding of disability is informed by a range of attitudes, experiences and beliefs.^{[footnote 88]} The research literature reports cultural variations in how disability is responded to. Some people at risk of experiencing mental health conditions avoid diagnosis and support because of cultural attitudes towards mental health.^{[footnote 89]}^{[footnote 90]}^{[footnote 91]} For example, research reporting the views of African-descended faith communities about mental health reveals how some community members see mental health conditions as a moral failing or a ‘weakness’, stemming from a lack of faith.^{[footnote 92]} In addition, some unaccompanied refugee children, who are at risk of having or developing mental health conditions resulting from trauma in their home countries, described how mental health may risk being associated with terms such as ‘crazy’ and ‘mental’. Unaccompanied refugee children’s own perception of mental health, as well as negative views of mental health practitioners, leads them away from diagnosis and treatment. This suspicion might come from negative experiences of mental health treatment in the children’s home countries.^{[footnote 93]}

Some of the research reviewed for this report examined the perspective of ethnic minority groups towards disability, including mental health, suggesting possible cultural and religious variations in how disabled people are seen. For example, researchers have reported that people from African-descended faith communities do not always perceive mental health through a Western medical model of disability which interprets mental health in terms of illness, with degrees of severity.^{[footnote 94]} Instead, a view is presented which sees mental health conditions as a single, severe condition, with terms used such as ‘mad’ and ‘insane’, and is associated with violence and danger. In some faith communities, mental health is interpreted in terms of possession from demons or evil spirits. Where this is the case, some people who experience mental health conditions seek help from faith leaders rather than clinicians, leading to exorcisms and prayer rather than diagnosis and treatment using Western medicine. It is important to note that not all faith leaders or people of African descent agree with this view, though some have expressed a lack of knowledge about how best to support people experiencing mental health conditions as well as ways to reduce stigma associated with mental health conditions.^{[footnote 95]}

Some of the limited research on the experiences of black and ethnic minority disabled people points to the need to understand the associations between factors such as ethnicity, culture, and racism,^{[footnote 96]} such as for people with mental health conditions.^{[footnote 97]} Further research would help shed light on disparities for black and ethnic minority people, particularly men, with regard to experiences within mental health services and treatment outcomes.^{[footnote 98]}^{[footnote 99]}

By examining the themes described in the research literature about attitudes, stereotypes and assumptions about disabled people’s ‘other’ identities, we find a largely negative view being reported. We also find difficulties when looking at experiences associated with single identities (for example, what does a person experience based on one characteristic – disabled or young, disabled or male, disabled or a member of a marginalised ethnic group). Men and women with physical impairments share aspirations, such as being independent, making friends and finding sexual partners, though these aspirations are sometimes described as gendered to the extent that men are reported to want to drink with friends, and women report a desire to start families. But the lack of research reviewed into the experience of different groups of LGBTQ+ people skews the picture being presented, as much of the work on gender is about the difference between males and females, ignoring those who reject such a distinction or identify otherwise. Similarly, the research into disability, ethnicity, and religion is largely concerned with the views of ethnic minority groups and faith groups towards people with mental health conditions. It does not examine to any great extent how disabled ethnic minority groups experience attitudes, stereotypes, and assumptions.^{[footnote 100]}

Question 6

Question 3: Impacts on identity and inclusion

Accepted Answer

Research question 3:

What are the impacts of these attitudes, stereotypes and assumptions on self-identity and feelings of inclusion in society?

In this section we describe the main themes emerging from studies on the ways in which disabled people are affected by society’s attitudes, stereotypes, and assumptions towards disability.

Lack of awareness leads to a lack of support

Feelings of inclusion in society are influenced by the extent to which society adapts to meet the needs of disabled people.^{[footnote 137]} The research reviewed for this report presents a view of disabled people as being inconvenient, and a society that struggles to support certain groups.^{[footnote 138]} For example, day-to-day activities such as shopping becomes problematic for people with dementia when shops regularly change their layout and the location of items, resulting in people with the condition experiencing anxiety and confusion.^{[footnote 139]} People with psychosis talk about how public perceptions of the condition include negative stereotypes such as danger, unpredictability, and permanence. Stigma is pervasive throughout social systems of service users and can lead to social exclusion, devaluation of difference, lack of power and control, lack of understanding, stereotyping and discrimination, inferiority and inequality, shame and secrecy, and pessimism about recovery.^{[footnote 140]}

A big theme in the research is employment. Disabled research participants describe difficulties finding work,^{[footnote 141]} inaccessible workplaces,^{[footnote 142]} and job losses^{[footnote 143]} especially after being diagnosed with a progressive condition or an acquired impairment. Some people describe being discouraged from finding work^{[footnote 144]} or, in the case of people with dwarfism, being steered toward jobs that are deemed by employers as being more suitable for them, for example, low skilled work that is said to be less demanding.^{[footnote 145]} These experiences can lead disabled people to feel devalued, unwanted, unproductive, and no longer of use to society.^{[footnote 146]}^{[footnote 147]} Research shows how disabled people sometimes experience a decline in productivity because of a lack of accessible opportunities to engage in training, attend events and network. Such perceptions are internalised with evidence showing that people with mild intellectual disabilities experience a downward spiral which can include self-loathing, depression, feeling angry, lonely, developing dependencies on alcohol, and developing suicidal thoughts.^{[footnote 148]} Evidence also shows that people with restricted growth feel ‘vulnerable’ and a ‘burden’ in public spaces which are physically inaccessible – because of this they stay home rather than attend social events, and so isolate themselves.^{[footnote 149]}

Feelings of loneliness and isolation

A core theme in the research is that disabled people can often feel isolated and experience loneliness, which in turn negatively affects their sense of self and the extent to which they feel like they belong to society.^{[footnote 150]}^{[footnote 151]} Reports highlight how some autistic people experience bullying and have very few (if any) friends.^{[footnote 152]}^{[footnote 153]}. People with progressive neurological conditions or mental health difficulties who once enjoyed a rich social life report that maintaining friendships is a challenge, with friends drifting away over time. Making new friends can also be a challenge, because of negative public perceptions of progressive conditions and a lack of awareness of the abilities and needs of this group. Difficulties finding romantic partners was commonly discussed in the literature.^{[footnote 154]}^{[footnote 155]}^{[footnote 156]}^{[footnote 157]} Feelings of loneliness and isolation leads people to feel hurt and ostracised by society^{[footnote 158]}^{[footnote 159]} with some people with physical impairments reporting that they avoid going out in public to avoid stares^{[footnote 160]} and unwanted touching.^{[footnote 161]} People with learning disabilities have reported that the fear of being bullied by members of the public has led them to stay at home, avoid visits to hospital and avoid taking part in social activities.^{[footnote 162]} This fear results in increased loneliness and could negatively affect their mental and physical health.^{[footnote 163]}^{[footnote 164]} Research suggests that people’s mental health improves when they have opportunities to socialise and make friends,^{[footnote 165]} and reduced social stigma is associated with increased positive emotions, a feeling of belonging, and higher levels of self-esteem.^{[footnote 166]}^{[footnote 167]}

Institutional stigma

The theme of institutional stigma refers to the ways in which institutions such as hospitals, schools, councils, and prisons can sometimes operate under a set of negative and unwarranted beliefs towards disabled people. For example, people who experience mental health conditions report the different ways that their labels are responded to. People diagnosed with depression sometimes question the extent to which institutions see depression as a serious health condition, treating it with less urgency than other medical conditions. This resulted in delayed assessment and treatment, or a denial of treatment altogether. This leads to people experiencing depression feeling dismissed and ignored, reflecting a lack of understanding of the condition.^{[footnote 168]} This relates to the idea of a hierarchy of impairments,^{[footnote 169]} with some labels being more desirable than others in the eyes of the general public. For example, a research report shows that families sometimes prefer the label ‘Asperger’s’ to ‘autism’ because the former is associated with less social stigma.^{[footnote 170]} Similarly, certain labels associated with mental health are said to be associated with more public sympathy than others – some labels like ‘psychosis’ are associated with being more ‘dangerous’ than other labels, such as depression. But research also suggests that some labels (depression) are less likely to be taken seriously, and slower to open doors to treatment,^{[footnote 171]} leading to a negative self-perception. People with dementia report negative and upsetting attitudes by healthcare professionals who perhaps under-estimate the cognitive abilities and independence of people recently diagnosed.^{[footnote 172]}

Perceived and internalised stigma

Perceived stigma describes the ways in which disabled people are aware of society’s negative stereotypes, attitudes and assumptions about disability. Internalised stigma refers to the effect of this awareness on disabled people’s self-identity. The research described in this report suggests that disabled people are very aware of society’s negative views of disability, and internalise this stigma which causes harm.^{[footnote 173]}^{[footnote 174]}^{[footnote 175]}^{[footnote 176]} For example, some groups are acutely aware of the stigma attached to mental health conditions and go out of their way to avoid diagnosis and treatment. One study which conducted focus groups with people with lived experience of mental health conditions and stigma found that some people hide their diagnosis from friends and family members. The worry of being ‘outed’ as a disabled person leads to further anxiety and paranoia.^{[footnote 177]} This study also found that a mental health label is ‘feared’ and participants were often angry with themselves and blamed themselves for their condition.^{[footnote 178]} The experience of social exclusion, such as being rejected by peers, leads to negative social comparison and the feeling of being different to others. This experience has been reported widely among people with learning disabilities, autism, physical impairments, mental health conditions, and speech and language impairments.^{[footnote 179]}^{[footnote 180]}^{[footnote 181]}^{[footnote 182]}^{[footnote 183]}^{[footnote 184]}^{[footnote 185]}^{[footnote 186]}^{[footnote 187]} For example, people with learning disabilities have reported not being picked for physical education in school, which reduces their confidence and makes them feel excluded. This results in negative emotions such as feeling sad, low and depressed.^{[footnote 188]} Similar findings are reported in research involving autistic students who find it hard to make friends, resulting in feeling lonely, depressed and rejected.^{[footnote 189]} Children with speech and language impairments who struggle to achieve the same academic standards as other children in class report feeling less intelligent than other children, and therefore different, which in turn reinforces a negative self-image.^{[footnote 190]} The sense of appearing different to others (and the fear of appearing different) sometimes stems from past experiences of being separated and segregated, being sent to special education classes and classes that are not age-appropriate, which lead to bullying such as name calling.^{[footnote 191]} The research shows that feeling different to others, being treated as different and being rejected from peer groups harms children’s self-perception and leads them to feeling ‘dumb’^{[footnote 192]} and undesirable.^{[footnote 193]} These feelings of exclusion also affect disabled people’s sense of self in terms of them feeling like they are not being heard by those around them.^{[footnote 194]}^{[footnote 195]} This could be to such an extent that they had to ask permission to speak about themselves.^{[footnote 196]} Disabled people also experience challenges in knowing and describing who they are besides medical diagnoses, which affects their self-identity and experiences of hobbies and interests. This was evidenced by women with Down’s Syndrome who discussed through semi-structured interviews that finding a place in society helped to challenge stigma and gain ownership of their identity and lives.^{[footnote 197]}

Compensatory behaviours

As discussed in other sections of this report, the research presents a largely negative view of society’s attitudes, stereotypes and assumptions about disability and disabled people. But there are some positive accounts in the literature, including the strategies that disabled people use to cope, and the steps they take to improve their self-identity, well-being and feelings of inclusion. This includes success stories of disabled people making friends and sustaining friendships, which in turn improves their sense of self (their self-worth) and enhances their sense of belonging.^{[footnote 198]} For example, people with physical impairments who have a close circle of friends describe themselves in positive ways, such as being ‘funny’, ‘reliable’ and ‘trustworthy’.^{[footnote 199]} Making friends helps with loneliness and improves well-being.^{[footnote 200]} Research also found that teenagers with developmental co-ordination disorder who are able to make choices for themselves reported increased well-being.^{[footnote 201]}

Being able to act authentically and be oneself in the presence of others (such as family and friends), can help people feel accepted.^{[footnote 202]}^{[footnote 203]}^{[footnote 204]} Being in good mental health, and having the health affirmed by others, also enhances self-perception.^{[footnote 205]}^{[footnote 206]} Taking positive action and engaging in therapy can help people experiencing mental health conditions.^{[footnote 207]}^{[footnote 208]} People who engage in talking therapies, act as advocates and train others about mental health report that this helps them with internalised stigma and challenges public perception of mental health.^{[footnote 209]}

Some people cope or draw strength on the idea that everybody is different. This blurs the distinction between being disabled and non-disabled, and helps people feel better by acknowledging that difference is common and shared.^{[footnote 210]} But some disabled people differentiate themselves from other disabled people by seeing their impairments as less severe than others, avoid associating with others, and avoid internalising stigma.^{[footnote 211]}

Question 7

Question 4: Strategies, services and support

Accepted Answer

Research question 4:

What are the strategies and services/support that promote awareness of the capabilities and contributions of disabled people in society and/or impact widely on disabled people’s choices and chances in life, and on their everyday life experiences?

In this final section we summarise research themes about the schemes and services that exist to help promote social change in terms of society recognising the value of disability, and enhancing life chances for disabled people.

Strategies

Strategies typically focused on challenging and changing the negative attitudes associated with disability. There were various examples of such schemes reported in the research.

Training and education about disability

Disabled people thought that education and awareness training programmes to address negative attitudes associated with disability were important. This education and training could take on different forms, such as:

training for people who support disabled people
education for disabled people to recognise and strengthen their own abilities
increasing contact between disabled and non-disabled people
disabled people’s activism and protest

Regarding training for people who support disabled people, studies reported the importance of effective and sustained training which focused on challenging negative attitudes and to ensure that disabled people are enabled to reach their potential.^{[footnote 212]}^{[footnote 213]}^{[footnote 214]} For example, effective disability awareness training for healthcare professionals, such as those within the mental health profession, was raised as an important enabler.^{[footnote 215]} This training should also focus on challenging traditional medical model of disability narratives, which focus on the importance of ‘curing’ disability, and the perception that disabled people are burdens in society.^{[footnote 216]} Instead, a social model perspective of disability should be used, which recognises the societal barriers faced by disabled people.^{[footnote 217]} Disabled people can feel empowered and develop a more positive self-image when training others.^{[footnote 218]}^{[footnote 219]} For example, people who experience speech and language impairments share a desire to challenge negative stereotypes and create counter narratives that challenge deficits views of this group.^{[footnote 220]}

Disabled people also appreciated opportunities for training, so that they could learn and develop new skills to improve their chances in life, as well as to help create positive social change. For example, one study described how a disabled person’s access to university education helped drive their desire to address public stigma associated with disability.^{[footnote 221]} The challenge is ensuring that any support provided to disabled people aimed at encouraging independence and independent living skills does not have the effect of reinforcing dependency.^{[footnote 222]}

Regarding contact with disabled people, research suggests positive change may emerge if non-disabled people are able to increase their level of direct engagement with disabled people, such as in a one-to-one conversation. Examples of positive change may include non-disabled people having their attitudes and biases about disability challenged and changed, as well as creating a sense of understanding about disabled people’s experiences.^{[footnote 223]} But some researchers have suggested that stigmatised disabled people (such as people with learning disabilities) may struggle to influence society’s perception, and that challenging negative attitudes is a shared social responsibility that should not rest entirely on stigmatised groups.^{[footnote 224]}

The local media plays a significant role in shaping public attitudes towards and understandings of disabled people. Studies suggest the need to challenge ongoing negative stereotypes by having disabled people positively portrayed in media, such as in well-researched informative documentaries.^{[footnote 225]}^{[footnote 226]}^{[footnote 227]} Activism and protest, where societal attitudes about disability are challenged and changed in a collective way, was also raised as a potentially effective educational scheme.^{[footnote 228]}^{[footnote 229]}^{[footnote 230]} But concerns were raised that certain types of activism, such as protest marches, may exclude disabled people with particular needs and impairments – for example, disabled people who want to protest about climate change.^{[footnote 231]}

Disability awareness programmes (for example, regarding mental health)

Examples of organised awareness programmes designed to improve perceptions of disability were also found and advocated for.^{[footnote 232]} While these individual disability awareness programmes showed positive trends, such as in terms of improved experiences between disabled people and their family and friends,^{[footnote 233]} the overall impact of such programmes was mixed. One study revealed no differences in experiences of discrimination between disabled people who were and were not aware of a specific awareness programme on mental health.^{[footnote 234]} Another demonstrated no change in the discrimination experienced by disabled people from healthcare professionals.^{[footnote 235]} But it is important to acknowledge that both of these studies are over 10 years old. Therefore, this only provides partial evidence and more up-to-date evidence on disability awareness programmes would be beneficial.

Building trust between professionals and disabled people

Studies revealed that some disabled people had fear and distrust of professionals, including mental health professionals. There were several reported reasons for this, such as the fear of being stigmatised, and concerns that their conditions or needs would not be taken seriously.^{[footnote 236]}^{[footnote 237]}^{[footnote 238]}^{[footnote 239]}^{[footnote 240]} These factors may lead disabled people to avoid getting help and support. Schemes which focus on healthcare professionals working with disabled people to regain trust, and which acknowledge the fears and concerns that disabled people may have about accessing help and support, were recommended.^{[footnote 241]}

Disabled people being able to describe themselves and their needs in their own words

Finally, research described the importance of giving disabled people the freedom and autonomy to describe their life experiences in their own ways.^{[footnote 242]} Disabled people being able to share their life story and journey provides a sense of empowerment and control.^{[footnote 243]} This can be achieved in various different ways – for example, through reflective journaling.^{[footnote 244]} Other studies demonstrated the importance of disabled people using humour to describe their experience and challenge discriminatory views regarding disability.^{[footnote 245]} The benefits of using humour in this way was regarded as an act of defiance and empowerment, and as a way to re-address feelings of learned helplessness. Humour was also used to create authentic narratives about what disability is and what it means in society, through confronting views that disabled people should be viewed as objects of pity and sympathy.^{[footnote 246]}^{[footnote 247]}

Services

Representation of disabled people in services

Concerns were raised in the research that disabled people’s voices are not routinely heard in service provision. It was felt that there should be greater representation of disabled people as service users in the formation and changing of such services.^{[footnote 248]} Opportunities for disabled people to come together and have a sense of representation at all stages of the user journey could positively affect the shaping of inclusive and accessible services.

Self-advocacy and collective support/social groups

Studies showed how disabled people can gain meaning in their lives through recognising their own self-worth, and helping other disabled people navigate challenging experiences of stigma.^{[footnote 249]}^{[footnote 250]}^{[footnote 251]}^{[footnote 252]} This meaning was observed through the belief that they could negotiate challenges in their own lives.^{[footnote 253]} For example, research demonstrates how disabled people experiencing bullying feel able to advocate for themselves in terms of acknowledging their sense of value and having a desire to educate the bully.^{[footnote 254]} Other research highlighted the importance of social groups as a way to provide a sense of collective support and safety. For example, for many disabled people, the internet is a useful resource to allow them to create a meaningful sense of identity and belonging with other people who share their experiences.^{[footnote 255]}^{[footnote 256]}^{[footnote 257]} The benefits of these social networks include access to information and strategies, such as in how disabled people might navigate stigma.^{[footnote 258]} They may also have feelings of altruism and a sense of gratification that they are able to share their knowledge and wisdom with other disabled people experiencing similar difficulties.^{[footnote 259]}

Question 8

Conclusion

Accepted Answer

This report has shared a thematic review into public perceptions and attitudes towards disabled people in the UK. While protections are in place to prevent disabled people from experiencing substandard treatment and discrimination, this review has revealed how negative societal attitudes and experiences of stigma and discrimination remain a common occurrence in disabled people’s lives.^{[footnote 260]}^{[footnote 261]} As a consequence of these negative societal attitudes, disabled people may experience costs to their health and well-being, attributed in part, to the challenges encountered when trying to protect themselves from felt stigma. To address the negative societal attitudes towards disability, and the felt stigma that disabled people face, this review recognises the importance of education and disability awareness training, and rebuilding trust in stakeholder groups that disabled people may be fearful of. In addition, the findings revealed how providing opportunities for disabled people to create a positive identity and sense of self which incorporates disability in an authentic way, may be beneficial.

Limitations

A consistent challenge in interpreting the included studies was the fluidity with how disability attitudes and experiences of stigmatisation are defined and perceived. There is a separate challenge to effectively document the impact of such attitudes on the lives of disabled people, such as:

how disabled people feel about themselves
whether they are being denied fair access to healthcare services
whether responses to stigma, such as passing or camouflaging, may help or hinder interactions with others

But the research has at times revealed raw and deeply problematic experiences for disabled people. These include experiencing stigma about whether their impairment will be seen as legitimate. This report argues that the lived experiences shared by disabled people must be heard and recognised if societal attitudes about disability are to be improved.

It is also important to be clear that this thematic review focuses on lived experience research. That comes with limitations, including small sample sizes. Because of this, it is difficult to generalise the experiences of disability as they are unique to the individual and vary among protected characteristics and impairment types. Therefore, this lived experience research gives us a better – but far from complete – understanding of the issues faced by disabled people and people with health conditions in relation to public perceptions and attitudes towards disability, including how disabled people experience these perceptions and attitudes.

Gaps in research

Gaps in the research covered in this thematic review include:

the nature of the participants who were included in the individual studies
how the research was completed, including the specific focus

With regard to the research participants, the majority of research studies focused on the lived experiences of people with specific impairments, such as mental health conditions. As such, it is difficult to establish whether disability attitudes or experiences of stigma are consistent across all disabled people, or whether they are specific to certain impairment types. This is particularly the case when considering the hierarchy of difference and desirability noted in Question 1. For example, it might be expected that disabled people with a visible impairment may not be able to pass or camouflage in a way that people with an invisible impairment can. Because of this, they might have to adopt other coping strategies. In addition, participants in the reviewed studies were able to communicate their experiences for themselves, and so experiences of stigma from the perspective of non-verbal disabled people, such as people with profound and multiple learning disabilities, may be missing. More research is needed with a greater diversity of disabled people and types of impairments to establish the collective experiences of disability attitudes and stigma, so that inclusive interventions can be designed and implemented.

This recommendation is important when considering how the research reviewed in this report was completed. In the majority of research projects in this thematic review, disabled people had been purely participants of the study, rather than the research being conducted with them. This means that there were limited examples of studies that were led by disabled people on the topics of attitudes and stigma. In addition, regarding the scope of individual research projects, evidence was lacking of schemes and strategies that demonstrate effectiveness in improving societal attitudes and/or reducing disabled people’s experiences of stigmatisation. A limitation of this thematic review, therefore, is being able to recommend accessible and inclusive case study examples created by disabled people that could be used to help promote social change. More inclusive and co-produced research led by disabled people is needed to explore what effective and accessible attitudinal change in society looks like.

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Executive summary

Methodology

Phase 1

Phase 2

Summary of findings

Introduction

Methodology

Question 1: Attitudes towards disability

Deficit-based views of disabled people: Focusing on the negative

Representations of disability in the media

Infantilising disabled people

Low expectations of disabled people

Objects of pity

Object of ridicule

Hierarchies of difference and desirability

Self-perception

Familial and ‘courtesy’ stigma

Stigma from healthcare professionals

Positive accounts of disability: disability as an asset and disabled people as heroes

Question 2: Attitudes towards other identities

Disability and gender

Disability and age

Disability, ethnicity, and religion

Question 3: Impacts on identity and inclusion

Forced dependency

Stigma and non-disclosure: harmful effects of hiding difference

Help avoidance

Lack of awareness leads to a lack of support

Feelings of loneliness and isolation

Institutional stigma

Perceived and internalised stigma

Compensatory behaviours

Question 4: Strategies, services and support

Strategies

Training and education about disability

Disability awareness programmes (for example, regarding mental health)

Building trust between professionals and disabled people

Disabled people being able to describe themselves and their needs in their own words

Services

Representation of disabled people in services

Self-advocacy and collective support/social groups

Conclusion

Limitations

Gaps in research

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