2.1 Definitions and terminology used in this report
The research, and therefore this report, follow the social model of disability in their approach. This is a conscious decision as the social model is the preferred understanding of disability by disability activists and disabled people’s organisations in the UK.
The voluntary sector reflects society … it has no understanding of barriers. Frequently people talk about equality of opportunity rather than systemic oppression; most organisations’ senior management lacked knowledge of the social model of disability and inclusion.
The social model of disability
The social model of disability is the philosophical and theoretical approach which dominates how the disability sector in the UK understands disability and how disability fits into society. The social model of disability was developed by disabled people in the UK as a means of explaining the discrimination and barriers that they faced without blaming themselves.
Traditionally in the UK disability was understood from a medical perspective, meaning that disabled people were seen as the problem that needed to be fixed and were expected to normalise themselves via medical intervention in order to be able to access society.
Due to the disadvantages disabled people faced in UK society in the late nineteenth and early twentieth century the country saw a boom in charitable trusts and organisations set up to support disabled people in recognition of the obstacles they encountered. These organisations traditionally focused on disabled people as objects of pity in order to get donations from the public to run their services and interventions. Within the charity model of disability non-disabled people were seen as the experts in disability.
The social model of disability sees disability as a social construction which is caused by barriers in society which disable an individual with an impairment. These barriers fall into three broad categories:
- Environmental
- Attitudinal
- Institutional
Under the social model of disability everyone in society has a responsibility to remove barriers in order to achieve equality for disabled people. The social model of disability sees disabled people as having the same right to have a say in their lives as non-disabled people.
*taken from Todd (2018) Developing Inclusive Leadership in the Disability Movement: Lessons and Learning from Australia and New Zealand.
We are using the term civil society to cover charities, not-for-profit organisations, non-governmental organisations, social enterprise, user-led organisations and disabled people’s organisations. Later in the report we will discuss the consequences of this definition in relation to disabled people’s organisations. It is important to stress that disabled people do not necessarily work for, or want to work for, disability or health-related organisations. The findings and recommendations of this report are designed to encourage the whole sector to recognise, support and develop its disabled leaders and future leaders.
You end up being typecast as to where you are and where you should be as a disabled CEO… At the start of my career I looked outside the disability space for work but didn’t get anywhere… As a disabled leader you are not seen as a whole person.
We use the Equality Act 2010 definition and the United Nations Convention on the Rights of Persons with Disabilities preamble to understand who is covered by the term ‘disabled person’. Knowledge and understanding of these definitions vary massively. To support the research process, where needed we provided interviewees with these definitions. They are not without issue as definitions: however, they are commonly understood in the UK. The ways in which civil society defines disability will be explored further in the findings of this report.
Disability definitions
Equality Act 2010
‘a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities.’
UN Convention of the Rights of Persons with Disabilities 2008
‘Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’
Finally, we acknowledge that leadership, as a concept, has multiple and complex meanings and definitions. For the purposes of this report and for the research that we carried out to support it we are referring to leadership in the specific sense of governance and senior executive leadership positions, such as chief executive officers (CEOs) or directors in civil society. This makes sense for ACEVO, given its remit and role in supporting civil society chief executives. However, we also recognise that leadership happens at different levels across an organisation; this is one reason why initiatives to support and develop disabled employees need to be embedded throughout those organisations.
