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Accessing Leadership: supporting disabled leaders and future leaders in the voluntary sector – Part one: Scoping Review


The Institute of Leadership and Management (ILM) describes the disabled community as an ‘untapped talent pool’. Disability too often goes unmentioned in conversations about equality, diversity and inclusion, and almost half of disabled people worry about disclosing their disability to their employer.(1)

We don’t currently know much about how the voluntary sector makes the most of talented disabled leaders and future leaders, but we think it needs to do better. This project, created and funded by ACEVO, seeks to start that conversation.

About our project

ACEVO has started this project as part of their wider programme of work on equality, diversity and workplace cultures in the voluntary sector. Their 2020 report, Home Truths: Undoing racism and delivering real diversity in the charity sector, looks at whether the sector has a problem with ‘race’ equity, and how to address this. Earlier reports have looked at bullying within charities and creating safe organisational cultures. This project now turns to disability and disabled leaders in the voluntary sector.

The project has two components:

  • A scoping review: what do we already know about disabled voluntary sector leaders?
  • Interviews with current disabled voluntary sector leaders to understand their leadership journeys: what has helped, and what more needs to be done?

We intend to use findings from these components to draw together a road map to help ACEVO and the wider voluntary sector start to address some of the barriers that exist for disabled leaders and future leaders.

We know this will be a long process, and many charities and organisations will be right at the beginning of it. We want to focus on the attitudes, behaviours and systems that will help foster and encourage disabled leaders and future leaders, and to make best use of their talent.

What do we mean by disability?

Disabled people might have long-term physical disabilities or health conditions, mental health conditions, learning disabilities and neurodivergence, and/or sensory impairments. They might have one condition or multiple; their condition might be fluctuating, progressive or stable; and they might not always be, or have been, disabled. The common factor is that they are prevented or hindered from participating in society on an equal basis to non-disabled people, because systems and structures have not been designed with them in mind. As such, a person is not disabled by their specific health condition, but by the fact that systems exclude them as a result. This is called the social model of disability, and we use this understanding in this report and the wider project. This is similar to the definition used in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) – known as the human rights model. The human rights model, however, brings more of a focus on principles and values for policymaking, and the interaction between health- or condition-related impairment and structural oppression. The medical model of disability defines disability in relation to people’s health or other conditions, focusing on treatments, cures and individual responsibility, rather than barriers within the system.

For the most part we will use identity-first language in this report (i.e. disabled people, not people with disabilities). While some individuals may prefer people-first language, identity-first better reflects the social model, whereby people are disabled by conditions and design of society, structures and services, rather than because they have a medical condition. We will also refer to D/deaf people, recognising the diversity among hearing-impaired people, some of whom identify with a Deaf community, and others who do not; and to people with learning disabilities, recognising the wishes of some to be referred to as such. There will also be references to neurodiversity and neurodivergence, a social model interpretation of neurological and learning disabilities such as autistic spectrum disorders, dyspraxia, dyslexia and dyscalculia, attention deficit disorders and other similar conditions, rejecting medical approaches that seek to ‘cure’ individuals.

Not everyone who would be considered disabled under the law will identify as disabled, for a range of reasons. Some people may see themselves more as having a temporary health condition, such as cancer; some may have struggled to get a formal diagnosis; some may not realise their mental health condition, neurodivergence or other condition are included under the banner of ‘disability’; and others may feel uncomfortable with the label, because of society’s negative connotations, or their own perceptions about what does and doesn’t ‘count’. Employees may also choose to not disclose their disability – and no one should be compelled to do so. However, employers can take steps to make their employees feel comfortable discussing their needs, and contribute to the kind of cultural and attitudinal change necessary to rethink our ideas in wider society around disability.

What do we mean by the voluntary sector?

We want to find out what it is like to be a disabled person and to work in and lead charities and voluntary organisations in the English voluntary sector. This includes organisations in the disability movement and the voluntary health sector, campaigning for disabled people’s rights or condition- specific support, but also other charities and organisations where disabled people want to build careers with a social purpose within this sector.

The disability movement itself is made up of voluntary organisations – not all charities, and not all of whom identify with large charities – of a range of sizes, functions and leadership models. D/deaf and Disabled People’s Organisations (DDPOs, or DPOs) are user led pan-disability groups, often small and local, offering services, advice, campaigning and advocacy to other disabled people. These fit into a traditional ‘self-help’ or mutual aid model of organisation. Because of their size, resource challenges, experience and understanding of the issues, and for some a need to work to different work patterns than non-disabled people, disabled leaders in these organisations may face different challenges and have different models of leading their organisations effectively and sustainably. Some of these may be common to other user-led and small organisations, while others may be unique.

Disability and health charities are not necessarily run by disabled people, are often (but not always) about a specific condition, and fit more into a traditional ‘charity’ model. Many of these organisations do different types of policy and campaigning work around disabled people’s employment. This does not necessarily mean they employ disabled people, or support them to develop their careers within these organisations, although there are some examples of good and developing practice.

It is important not to assume that all disabled people do, or want to, work on disability or health issues, however. It is also not solely the responsibility of the people and organisations who do to help disabled people build their careers. The voluntary sector as a whole needs to think about how it supports its disabled staff, how it makes sure they have access to the same opportunities for development and career advancement as their non-disabled colleagues.

About this report

This report is a scoping review that looks at what we already know about disabled leaders and future leaders in the voluntary sector.

Section 1 will start by outlining the national and international context for disabled employment. This includes internationally-recognised rights for disabled people to participate in work and employment, and national legislation that protects some of those rights.

Section 2 looks at what we know about the disabled workforce overall, what we know about disabled workers in the voluntary sector, and finally what we know about disabled leaders in charities and voluntary organisations.

Section 3 then looks at what we can learn from disabled people’s experiences in other sectors.

Section 4 lists some schemes and programmes that already exist to support disabled employees, including leadership development programmes run by voluntary organisations for staff across sectors, business support, and government advice and schemes for meeting legal obligations.

Finally, section 5 will summarise what more we need to know and do, and the next stages of the project.

There are some suggestions and examples of good practice throughout this report. However, at this stage we have not made recommendations, as we need to talk to and learn from disabled people leading and working in the sector to understand their experiences. This report is, nevertheless, a call to action. As organisations begin to return to old ways of working, or start designing new ones, in response to the COVID-19 crisis, it is imperative that they do so in a way that takes into account, and works for, disabled workers.

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