‘Nothing About Us Without Us’ – what we can learn about trustee diversity from Deaf and Disabled people’s organisations

Alex Hendra from Inclusion London provides business and finance support to Deaf and Disabled people’s organisations.

Inclusion London provides support to over 90 Deaf and Disabled people’s organisations in London and beyond. These organisations are defined by being led by over 75% Disabled/Deaf trustees and employing over 50% Disabled/Deaf staff. They have helped to secure huge advances towards the goal of equality over the last 40 years and have led a real shift in the broader understanding of disability issues – moving from a medical or charitable ‘frame’ to a social model and human rights ‘frame’ that recognises people with impairments are disabled by society because of barriers that discriminate and exclude them.

Deaf and Disabled people’s organisations are highly valued by their users because of accessibility, holistic and often peer led approaches to support informed by lived experience, and engagement with large percentages of local Disabled people allowing them to be an authentic voice and community asset.

So, why aren’t more charities that provide services for Disabled people run directly by Disabled people, and what can all charities learn from Deaf and Disabled people’s organisations about embracing inclusion on trustee boards?


Countless times I’m met with disbelief that Deaf and Disabled people’s organisations are run directly by Disabled people, or insulting questions about whether ’they’ can be trusted to manage organisations and finances. There are also patronising assumptions that all people with impairments are inherently ‘vulnerable’ and that non-Disabled people know best what is in their interests. These attitudes are faced by many minority groups, but I’m constantly struck by how particularly entrenched this idea is around disability. I wonder how many people would still think it acceptable for a charity working on LGBTQ+ or BME issues to have no one with lived experience on their board or staff team? Yet this is still common in disability charities. Finding and retaining active trustees is always hard, but challenging assumptions about what people with lived experience can bring to your board opens up untapped pools of potential.

Growing your own trustees

Disabled people face undisputed barriers and discrimination in education/employment. This makes finding Disabled trustees with extensive management and governance experience harder, but trustee skills don’t have to come ready made.

A common characteristic of Deaf and Disabled people’s organisations is peer support. This gives people opportunities to develop leadership skills and knowledge through leading peer support groups, representation on forums, championing particular issues, or supported volunteering opportunities. People with lived experience can gradually build skills and confidence, while organisations can assess and test their skills over time.

For boards to be effective, ongoing trustee development is essential. A challenge for Deaf and Disabled people’s organisations is lack of accessible capacity building support. Finding providers with a track record in delivering support creatively and flexibly based around specific needs of your board is key.

Increasingly, funders will invest in capacity development as well as project funding – yet organisations often neglect trustee development as an essential element of sustainability.

Avoiding tokenism

All boards benefit from recognising people’s different strengths and abilities. Subgroups, different roles or champions for specific areas of responsibility/issues, and advisory groups all allow people to play to their strengths and make real contributions well beyond sharing their stories.

Valuing different ways of working and out of the box thinking brings huge benefits. In my experience some of the most creative (and ultimately successful) strategic and business modelling ideas have come from people with little previous experience of planning or management.

Overcoming barriers to participation

Stereotypes about access include using wheelchair-accessible venues and British Sign Language interpreters. These are indeed essential for some, but enabling participation is about more, and usually takes thought and collaboration as well as resources.

Lengthy meetings, dense papers and complex spreadsheets are going to put lots of people off or limit active participation. There are so many ways to make scrutiny and decision making more dynamic and interesting for everyone: from basics like plain English and Easy Read translations or verbal presentations from staff rather than KPI reports, through to inventive approaches like picture-supported finance materials, or using games, visualisations, and drama for strategic planning.

For some trustees, long term 1:1 support will be required to enable participation. In my work with organisations run by people with learning difficulties, securing funding for long term coaching is transformational in allowing trustees to fully control governance.

Being involved as a trustee isn’t for everyone. Deaf and Disabled people’s organisations understand that embedding control by people with lived experience in day to day decision making is an integral part of being user led. This goes way beyond running consultation or focus groups. Deaf and Disabled people’s organisations represent and employ people with lived experience at all levels of the organisation.

Why does this matter so much right now?

A UN report in 2017 found evidence of ‘grave and systematic violations of Disabled people’s rights’ in the UK and commended Deaf and Disabled people’s organisations for highlighting the issues. Now more than ever, we need to ensure people who live the repercussions of these violations are in the driving seat of charities supporting Disabled people.


This entry was posted in Policy and tagged , , . Bookmark the permalink.

Like this? Read more

Posts written by guests who have contributed to NCVO projects and events.

Comments are closed.