In our latest story of social action in Reading, Community Journalist Simone Illger interviews Sarah Snow, founding trustee of Stepping Forward. Stepping Forward works to facilitate and accelerate access to essential services, information, resources and life opportunities so that all people affected by disability can live a full life. All of their trustees have a child with a disability or have a disability themselves.
Tell us about yourself Sarah
I live in Reading with my three sons and have worked in the voluntary sector for over 25 years, developing projects in the UK and in West Africa. My middle child Marcus is autistic and has learning disabilities. Due to his love of trains I set up The Engine Shed ten years ago as a special interest group. I am involved in lots of different activities in Reading and elsewhere, on disability, human rights and all forms of community development.
Can you tell us a bit about Stepping Forward – what are its aims and objectives?
We work in Berkshire, delivering disability awareness sessions with schools, and ‘disability confident’ training with local organisations. We support families and carers through a disability advice and support service, which helps families to apply for essential equipment. We also take this service into local special schools. We link with international initiatives.
In addition to providing practical support to disabled people and their families and carers, we also undertake sensitisation work in the community that contributes towards social change. Despite progress in equality legislation and improved access to public spaces, negative public attitudes and awkwardness towards disability remain commonplace. A recent Scope study found that two-thirds of the British public feel uncomfortable talking to disabled people. Our school sessions and ‘disability confident’ sessions, led by disabled people, seek to address this and help create environments that are more conducive to the integration and participation of disabled people. Our direct support to individuals and families addresses the impact of disability, for example: social isolation, increased living costs, the need for specialist equipment and supported breaks.
What are some of the greatest challenges facing the organisation and those who use its services?
We are a small organisation at the moment but we aim to punch above our weight, delivering select support services and raising awareness of key issues facing disabled people. We know that these are difficult times for many people with disabilities and for their families and there is no doubt that the cuts are being felt by people in our area. This reflects the national picture, recently reported on in detail to the United Nations.
The picture emerging from the most recent evidence about disabled people’s lives remains deeply concerning. Disabled people across the UK continue to face serious regression of many of their rights, as presented in this report. Social protections have been reduced and disabled people and their families continue to be some of the hardest hit. More and more disabled people are finding it difficult to live independently and be included, and participate, in their communities on an equal basis. UK Independent Mechanism update report to the UN Committee on the Rights of Persons with Disabilities, October 2018
This is set within the context of limited public understanding of disability issues: Scope’s report, the ‘Disability Perception Gap’ 2018, showed that negative attitudes and prejudice remain a major problem for disabled people – one in three (32%) disabled respondents said that there is a lot of prejudice against disabled people in Britain.
Our working understanding of the unmet support needs of families with disabled children echoes the June 2018 report of The Disabled Children’s Partnership – a coalition of 60 charities supporting disabled children and their families – which found that three-quarters of family members said health services in their area had got worse; nearly two-thirds said the same for social care services; and just under half of respondents were aware of specific plans to cut services. What is clear is that families with disabled children are struggling to access support for a range of essential needs and it is impacting on multiple areas of their life.
What are your aspirations for the organisation?
We want to contribute towards the creation of a more inclusive society, one that ensures the rights of disabled people in all areas of activity. We will be doing this in multiple ways. Encouraging schools to engage with disability issues is a good start: we believe that disability awareness should form part of every child’s education – it is part of the human experience, affecting friends, family and community. A third of people become disabled in their working life. Teachers and pupils tell us that the sessions are extremely valuable in promoting discussion and understanding.
We are also concerned at the marginalisation of people with learning disabilities and the impact that this has on the right to a community, the right to health – and the right to life. People with learning disabilities in the UK die on average 28 years earlier than the rest of the population. The very simple and inexcusable reason for this is the second-class status of people with learning disabilities in our society. We will continue to raise awareness of this national scandal and push for better care and communication around the care and support needs of people with learning disabilities.
You’re looking to set up a Disability Hub in Reading. How did the idea come about and what will the hub provide?
We know that half of disabled people feel excluded from society (Equality and Human Rights Commission, October 2018). There are few and decreasing numbers of accessible places for organisations and individuals to meet in Reading, where people affected by disability can get support, advice and friendship. In response, Stepping Forward has decided to work to create a Disability Hub – comprised of offices, meeting rooms, alongside a range of advice and support.
Support for individuals and families across multiple areas is necessary to enable people to live a full and healthy life. The lasting impact of the Disability Hub will be a building and a resource where people can go who require support and advice on a range of issues related to disability. Whilst online information is essential and accessible, our experience is that a community of shared interest is also a vital source of information and support and can play a transformative role in the lives of people living with disabilities.
We will be working with others to hold multiple fundraising events in 2019 to make this vision a reality and would welcome the involvement of anyone who shares our vision.