Celebrating Trustees Week

Wed,8 November 2023
News Equality & Rights Participation
This year, Trustees Week is taking place from the 6th to the 10th of November. It is an opportunity to showcase charity trustees and thank them for their devoted time and commitment to charitable causes across the country. At Disability Rights UK, we wanted to share the words, experiences and backgrounds of a couple of our trustees. We are proud to be a Disabled People’s Organisation led, run and entrusted by Disabled people.

Liz Leach Murphy – Chair of Trustees 

At the age of 19, I was studying at the Leeds College of Music, where I studied the cello. I had been playing the cello for two years at this point, and I had my sight set on a career in music as a music therapist. But within the first year of my studies, I started to experience pain in my right arm, which led to an inability to use my right arm with any strength and limited the length of time I was able to play before it became impossible for me to continue. I started having investigations at the local hospital, eventually it was discovered that I had cervical ribs. This condition affects the core nerve system, sometimes called the vagus nerve and over time can lead to additional complications such as thoracic outlet syndrome, which I live with now. At the time I was offered weekly physiotherapy sessions to try and alleviate the pain I was experiencing, but unfortunately none of this intervention led to any significant change to the condition. At this stage the Consultant spoke to me about the option of surgery to remove the ribs. This came with a high level of risk and the chance of potential paralysis from the neck down was high. At this point I decided to live with the condition and find ways to manage it in such a way that I could continue to lead the life that I want to have. However, I had to stop playing the cello. 

I started to explore options that went beyond that available within the NHS. I questioned the care and support options available to me for my future. I asked for services to consider other options rather than pharmaceutical. 

At this point, I was introduced to working within health and social care. I worked with five men who had been institutionalised at Meanwood Park Hospital in Leeds. The men had recently moved out of the hospital back into the community but the impact of the institutional setting had been significant on their quality of life. They had been in the institution for at least 40 years. For me, I started to explore and question how our social care provision could work in a much better way, to uphold a person's identity and ensure that their quality of life was the main consideration.

I immersed myself in learning about person-centred approaches and to look at how the resources available within our health and social care system could be shared to enhance choice and control.  I worked alongside people and their families, as well as the social care teams and professional teams around the person, to explore how the person's voice could be upheld in the provision of their health and social care, placing an emphasis on the person sharing their ideas about how they wish to live and be supported.  

More often than not, people have wanted to be able to continue to explore their interests, to share their passions with others and to have meaningful connections within their community. Over the last 30 years I have been dedicated to this and in this time the people I have got to know have been able to move out of institutions and back to community, they’ve been able to set up their own homes and community support, they’ve gone on to set up their own businesses, study subjects that interest them, get married and build other meaningful relationships around them. Everyone, including Disabled people, can lead great lives, contribute into society and pursue aspirations. 

I followed DR UK for many years before I became Chair in January 2022. I appreciate and respect the contribution the charity is made to upholding the rights of Disabled people. I have found the information DR UK has made available via their website and newsletters especially on the topics of personal budgets, welfare and education valuable. I believe DR UK has a fundamental role in the move towards a more inclusive society and a hopeful future for Disabled people. 

Dr Naomi Lawson Jacobs - Trustee 

I'm new to the board of trustees – I was elected at last year's AGM, but I've been a supporter of DR UK's vital campaigning and policy work for a while. One reason I was keen to join the board is my commitment to diversity in disability rights activism. I want to be part of a movement that represents all Disabled people. I'm autistic and an active member of the neurodiversity movement, and I write and campaign for equality for neurodivergent people. I've always found solidarity in the disability rights movement, where we imagine a future when all our differences will be seen as valuable. But neurodivergent people have sometimes felt left out of Disabled People's Organisations, even while there is growing awareness of the injustices we face in a neurotypical society. I believe we are stronger together. I hope to see more DPOs building coalitions with groups that have not always felt included in the wider Disabled people's movement. DR UK is at the forefront of bringing DPOs together, so that we can make this vision for diversity a reality.

Part of my work involves campaigning for equality for disabled people in faith-based spaces. Article 30 of the UN Convention on the Rights of Persons with Disabilities guarantees Disabled people the right to participate in cultural activities. Yet we don't always get to play an equal part in our religious communities. I'm proud to have a leading role in a grassroots movement of Disabled people who share my faith, a role which includes training religious institutions in disability and neurodiversity equality and working in solidarity with Disabled people of other religious traditions. My co-written book, based on a decade of activist research with Disabled Christians, was just longlisted for the Michael Ramsey Prize. I'm currently editing an anthology written by Disabled people from all religions and none. I hope this book will amplify our lived experiences and help keep up the momentum for change in our communities. I appreciate DR UK's focus on intersectional disability justice, as we work to build a diverse movement, where Disabled people from all communities, backgrounds and religious traditions can have a role in building a more equitable society.

In my day job, I'm a social researcher. I get to play a small part in a long tradition of activist, user-led research for social change. Knowledge is power! The more we know about how policy impacts Disabled people, the more we can persuade policy makers and government departments to do something about disability injustice. Today, research is showing us the tragic impact of the cost-of-living crisis for disabled people. Poverty and food inequality have now reached unacceptable levels – 69% of people who use food banks are disabled (research from the Trussell Trust) and 20% of households with a single Disabled adult are living in severe poverty (research from Joseph Rowntree Foundation). With stark evidence of inequality like this, we can campaign for change. I'm glad to be able to support DR UK's research and policy work, as we influence the government on disability inequality, and call for a more just society for Disabled people.