3.2 The dynamics of disability in civil society
Disability and serving the needs of disabled people is a dominant theme in civil society and has been part of many organisations’ charitable purposes. For many people who grow up with or acquire impairments charity can be quite a dominant force in their lives. There are a lot of reasons for this which are beyond the scope of this report; however the dynamics of charity and its relationship to disabled people have significant consequences for disability leadership in civil society and how disabled leaders in the sector see themselves.
The charity model of disability
This is one of the more traditional approaches to viewing and approaching impairment and disability. The charity model of disability gets its name from the way in which charitable interventions traditionally perpetuated the concepts of vulnerability and helplessness, and have perpetuated the negative perception of impairment in society. The charity model of disability prioritises non-disabled experts, protectors and decision-makers over disabled people’s lived experience.
Historically, often using pity and perpetuating negative stereotypes in order to raise funds, or service delivery models that have sidelined the views and wishes of their service users, or in the worst cases perpetuated harmful systems and approaches, charitable models have not seen disabled people as actors in their own lives. This has led to the dominance of non-disabled people speaking on behalf of disabled people.
This is not to say charity doesn’t play an important role in disabled people’s lives. However, many disabled activists in the contemporary context feel that charities are doing the work of and covering the deficit of the state’s inability to meet disabled people’s basic rights, instead of campaigning for them to do so.
Additionally, many disability activists see charities as benefiting from disabled people’s oppression and therefore not necessarily working for the benefit of disabled people, but for the perpetuation of their own existence. This criticism may be particularly levelled at charities taking on government service delivery contracts.
Currently the vast majority of ‘out’ disabled leaders in civil society are associated with disability focused charities or disabled people’s organisations. As part of this research we tried to identify disabled leaders in civil society who were not associated with disability work and we struggled. A number of the disabled leaders we spoke to, both those ‘out’ and those who do not publicly identify as disabled, spoke of the frustration of being pigeonholed in disability-related roles and organisations, and not having the same career options within the sector.
Simultaneously, for many disabled leaders, civil society is something they choose to dissociate from because of the problematic history of power between disability focused charities and disabled people. The charitable model of disability is widely rejected by the disability community because of its ability to perpetuate oppressive attitudes and structures that many disabled people experience. The rejection of the charitable model of disability by politicised disabled people creates tension and friction when trying to group disabled people’s organisations in the category with organisations that they see themselves as being in opposition to.
Do they understand our sector… No because DPOs are about liberation not charity.
This is further complicated by the ambiguity and inconsistency with which the term ‘user-led’ has been applied within civil society. The phrase is sometimes used to refer to the group directly affected by an issue. It is also sometimes used in a way that is inclusive of those who are affected by association, such as parents, carers and family members, which fails to recognise the distinct voice of the affected individual. In some cases, this can reproduce paternalistic structures that disabled people have consistently fought against; the views and opinions of parents, carers and others are taken to represent the views and opinions of those more directly affected. While carers and others face their own unique challenges and issues that should be represented clearly, this cannot substitute for the voice of disabled people themselves.
Taking these complex issues together, this means disabled people’s organisations tend to see themselves as distinct from the voluntary sector while simultaneously being viewed externally as being part of it. In fact, during the interviews a number of interviewees objected to being asked about their careers in the voluntary sector because as far as they were concerned, they had not worked in the voluntary sector.
This presents a challenge for infrastructure bodies such as ACEVO in trying to be open and accessible to disabled leaders who are turned off automatically by the language inherent in voluntary sector spaces.
I have worked in DPOs [disabled people’s organisations], not charities or the voluntary sector.
Disabled people’s organisations by their very nature tend to be run by politically identifying disabled leaders. There isn’t a consistent understanding within the community of what constitutes a disabled people’s organisation beyond “an organisation run and controlled by disabled people”. Furthermore, there is disagreement both in the UK and internationally, as to what percentages are required to achieve the definition. For example, some organisations will describe themselves as disabled people’s organisations when they have 70% of the board and 50% of the staff politically identifying as disabled people; others define a disabled person’s organisation as 100% of the board and 50% of staff; and there are numerous definitions in between this.
I wouldn’t be in my role if I didn’t politically identify as disabled – as a CEO I am advocating for my community and systems change …
As mentioned at the start of this section, disabled leaders in civil society disproportionately tend to be associated with disability-related organisations. However, it is worth noting that DPOs themselves struggle with finding chief executives and directors who identify as disabled and have the requisite skills to keep organisations running. This will be touched on further in sections on disability inclusion in the wider context, and capacity and confidence. Disabled people’s organisations could really benefit from the sector as a whole supporting and developing disabled leaders and the support available for professional development through infrastructure bodies such as ACEVO.
If the culture of CPD [continuing professional development] is not embedded, you don’t think about what support you need as the CEO.
The consciousness that is currently being raised in civil society through campaigns such as Charity So White and the need for and effectiveness of organisations led by people of colour has the potential to offer some learning. This also potentially offers a more comfortable space for disabled people’s organisations to sit alongside organisations led by other systematically oppressed groups. This could also encourage recognition of intersecting oppression, and the specific, often unheard voices of Black disabled people. As highlighted by the Home Truths report, issues of racism and representation in civil society are only just beginning to be acknowledged. However the route forged by this work may support the development of a sector which is more inclusive of disability – and people who are multiply marginalised – as well.
Many of the disabled leaders we spoke to were excited at the prospect of working at the intersections and learning from the progress that Black and brown-led organisations have been making in this space. A number of the leaders spoken to as part of this project identified as Black or brown as well as disabled and reflected on how the experience of this intersection heavily impacted their experience as disabled leaders. Although co-operation and collaboration between lived experience-led organisations is viewed as beneficial by many, it is important to acknowledge and address the racism that exists within the disability movement and within disability-focused organisations at the outset of this collaboration.
COVID and the Black Lives Matter movement show the need for inequality groups to support each other.
This desire to work intersectionally presents infrastructure bodies such as ACEVO with an opportunity to play a supportive role in this kind of collaboration, due to their reach.
