Social model of disability: review of disability models and surveys (summary)

This paper reports on findings from a literature review conducted as part of a wider research project to develop survey questions, response options, and guidance that reflect the social model of disability. The literature review was undertaken during the initial ‘discovery’ phase of the research, to help support and inform subsequent stages of the research.

The Welsh Government adopted the social model of disability in 2002 making Wales one of the first countries in the world to do so. However, data collection is still heavily influenced by the Equality Act (2010) (UK legislation), and by extension, the medical model of disability. Welsh Government have identified that new questions are required to ensure the social model is reflected in its actions, data collection, and decision-making, and in the delivery of all services across Wales.

The National Centre for Social Research (NatCen) were therefore commissioned to develop and test a set of demographic survey questions, response options, and guidance. The questions and guidance will be designed to: support a diverse range of accessibility needs; work across different contexts and languages, including Welsh and British Sign Language (BSL); and be suitable across various data collection modes, such as online and in-person formats.

The research is split into 2 phases – an initial ‘discovery’ phase, followed by an ‘alpha’ phase to develop and test new survey questions. This report summarises findings from a literature review which took place during the first (discovery) phase.

The primary objective of the literature review was to synthesise recent academic and grey literature on models of disability, review existing surveys and question sets that collect data on the prevalence and experiences of disabled people and, where possible, how they align to models of disability. A high-level overview of each model is provided, including a summary of reported advantages and disadvantages in relation to the design, and delivery of survey research; and the identification of surveys and questions that are currently used to collect data about disabled people.

It should be noted, however, that the wider body of literature is both extensive and highly nuanced. While this report provides a summary of central points within the literature identified through the inclusion criteria set out below, it does not cover all aspects of the field, including variation in interpretation or application of models at an individual country level.

A literature review research design was supplemented with additional steps to create a more systematic approach. Therefore, the methodology consisted of:

• the identification of peer-reviewed research papers - searching academic databases using bespoke search strings and manual review of pre-identified journals
• the identification of grey literature - searching an online database using simplified search strings and a manual review of pre-identified websites
• the inclusion of evidence recommendations provided by a subject expert in survey measurement of various impairment types and the social model of disability
• backwards and forward tracking of important text citations

Academic studies and grey literature were shortlisted in 2 stages: a review of the title and abstract or executive summary, followed by a review of the full text. Approximately 50 studies were selected for inclusion in the review. Inclusion criteria comprised of published or in print peer reviewed academic articles; from 2014 onwards; that are available in English; and explicitly discussed the advantages or disadvantages of disability models when conducting survey research. Studies were selected to ensure coverage of research questions as well as to provide case studies of surveys and questions sets.

Once studies were shortlisted, a thematic framework was developed for data extraction which summarised identified evidence in a matrix. This approach meant the most relevant evidence were used and helped ensure central themes and evidence gaps were identified.

Models of disability

The literature review outlined existing evidence relating to 3 main models of disability: the medical model, social model, and biopsychosocial model. Over time, the literature evidenced a move away from medical aspects and towards more social factors. All 3 of the identified models were found to influence survey design in different ways, each with advantages and disadvantages.

According to the reviewed literature, the medical model of disability has been used since the mid-1800s, with a focus on impairment and deficit, viewing disability as a problem emerging from within a person. It provides clear criteria and can lead to targeted medical interventions, however, surveys based on the medical model can have a narrower focus and may under-estimate and under-identify disabled people. For example, neurodivergent people or first-language British Sign Language users often will not describe themselves as ‘having an illness or health condition’ and therefore are unlikely to be captured through a medical model-based question. The medical model of disability has influenced policy and legislation; for example, the Equality Act (2010) has aspects that focuses on what a person is unable to do, and requires specific criteria for individuals to be protected under the legislation.

As a direct response, the social model of disability was developed, making the distinction between a person’s impairment and the societal structures and attitudes that disable people. The emphasis is on reducing and removing barriers to access and inclusion in society. Research suggests that identifying and removing these barriers advocates for positive change and empowers disabled people. Identity-first (‘disabled person’) language became more common and often used by disabled people to reclaim their identity and autonomy. Criticisms of this model from the reviewed literature include the risk of interpretations that overlook and underestimate the impact that impairments have on people’s daily life by reproducing artificial boundaries between impairment, biology, and medicine on one hand and disability on the other.

The biopsychosocial model of disability attempts to bring together the social and medical models. Some literature suggests that the combination of a person’s impairment and/or health condition, personal factors, environmental influences, and their interactions allow for a more nuanced and complex understanding of disabled people. However, several articles suggest that this model is too broad and lacks clear guidelines for application. Concerns around applying this model in practice were highlighted in the literature, with survey measures becoming impairment centred, it potentially overlooks environmental and societal influences.

Existing surveys and question sets

The second part of the literature review examined surveys and question sets that collect data on the prevalence and experiences of disabled people, and (where possible) how they aligned to different models of disability. Case studies highlighted a variety of UK and international data collection and surveys that currently capture information related to disabled people.

The included surveys were from Australia, Canada, New Zealand, multiple surveys and question sets from the UK, and 5 question sets from the Washington Group on Disability Statistics.

The literature found that the majority of these surveys focused more on a person’s impairment, used language that referred to health conditions, and did not adequately measure the societal barriers that disabled people experience. Various studies questioned the ability of current standards to capture fluctuating or co-occurring impairments, and specific impairments related to neurodivergence or mental health conditions.

The literature review identified a need for a linguistic shift when adopting the social model of disability. Adopting inclusive, person-first language (for example ‘disabled person’) can affirm self-identity and promote respect for individuals' experiences.

Many existing surveys used closed question formats which can reduce participant experiences and impairment to a single yet broad category, for example, ‘mental health’ or ‘vision’. This can limit the granularity of data and may reduce participant engagement if they are unsure which category they should select. In contrast, it was found that, having multimodal accessibility and using mixed-format questionnaires can enhance engagement.

The literature outlined the importance of balancing the collection of in-depth and meaningful data whilst not being too lengthy and discourage people from participating. Shorter versions of question sets facilitate quick assessments, making them ideal for large-scale surveys or situations where time is constrained. In contrast, longer versions provide a more detailed understanding of being disabled, capturing a wider range of experiences and challenges faced by individuals.

The experiences of disabled children and young people were only addressed in a few of the reviewed surveys. Existing adult-centric standards were not appropriate or relevant to disabled children and young people, and most surveys relied on adult proxy responses.

The review of academic and grey literature outlined existing evidence relating to 3 main models of disability, and a variety of question sets from across the UK and internationally that capture data about impairment and disabled people.

None of the identified questions or surveys solely used the social model of disability. Few surveys had questions related to the societal barriers that disabled people experience. Of the examples found, even those that stated they used the social model, better reflected the biopsychosocial model of disability.

The review of literature and existing survey questions suggests there is scope for developing new measures that align with the principles of the social model. This could include questions on barriers, language and terminology reviewed in relation to the concepts outlined in the social model of disability; and an approach that balances the depth of data collected against the required survey length.

Report author: Nathan Hudson, Crescenzo Pinto, John Evans, Yasmin Begum, Florence Trégan

Views expressed in this report are those of the researchers and not necessarily those of the Welsh Government.

For further information please contact:
Laura Tolland
Disability Disparity Evidence Unit
Equality, Poverty, Children’s Evidence and Support Division
Welsh Government
Cathays Park
Cardiff
CF10 3NQ

Email: EqualityEvidenceUnit@gov.wales

Social research number: 77/2025
Digital ISBN: 978-1-80633-151-2