What is ‘lived experience’?

Lived experience is defined as “personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people.” It is also defined as “the experiences of people on whom a social issue or combination of issues has had a direct impact.”

To put it another way, lived experience is the way someone understands and reacts to the world around them as a result of their own experiences. Someone with lived experience is likely to have a better understanding of real-life impact and may be better placed to advise others on that subject.

SCLD believe that people with lived experience of life with a learning disability are the best people to advise on decisions that will  impact them.

People with lived experience can mean people with learning disabilities themselves and those in their close support network, such as family members and support workers.

Why are lived experience boards important?

For too long, people with learning disabilities have been excluded within the development of legislation that impacts their lives, their wellbeing, and their opportunities. This exclusion is often based on the belief that people with learning disabilities need other people to speak for them.

This is not true and is also discriminatory – it can lead to decisions being made that have negative impacts on peoples’ lives, both in the short and long term.

Lived experience boards can challenge this view by creating an inclusive platform to support people with learning disabilities to speak out and push for positive change.

The SCLD Human Rights Lived Experience Board

The Scottish Government is rewriting the Scottish Human Rights Bill. They want the new Bill to be as inclusive and supportive as possible of people with learning disabilities. The Scottish Commission for People with Learning Disabilities (SCLD) was one of the organisations the Scottish Government asked to help them to inform the Bill.  Our response was to create the Human Rights Lived Experience Board.

Our Lived Experience Board is a one-year project, funded by the Scottish Government, made up of 15 people who either have learning disabilities or are an advocate/supporter of a person with a learning disability.

In early meetings the group decided that the best way to support the Scottish Government, is to concentrate on discussing what needs to change in order to create a Human Rights Bill that works for people with learning disabilities.

Focussing on the importance of human rights incorporation, the group want to see a Bill that supports and empowers people with learning disabilities to realise their human rights and to live their lives as they choose.

Board meetings

At the second meeting of the Lived Experience Board, members were asked why they wanted to be a part of this work. This resulted in 3 key outcomes the Board and SCLD want to see as a result of this work and a new Human Rights Bill for Scotland. These outcomes are:

1. People with learning disabilities have space to talk for themselves, can share their own experiences, and are involved in decision making processes that impact their lives.
2. People with learning disabilities who have direct experience having their human rights denied have the opportunity to challenge this and create positive change for themselves and others.
3. People with learning disabilities see roadblocks to opportunities removed, to allow them to live the life they want.

To realise these goals the group meets regularly to talk about and share their own experiences of specific aspects of life impacted by the Bill, for example: access to justice, human rights, employment, equality and inclusion.

Members use their lived experiences and knowledge to raise awareness of the challenges faced by people with learning disabilities, and the impact on their life that realisation of human rights can have.

The group will use these discussions to come up with recommendations for the Scottish Government on how best to meaningfully include and commit to protecting the human rights of people with learning disabilities in the new Bill.

To date, the Board has produced one of it’s two reports, which include recommendations for the Scottish Government. The remainder of the Board’s work will focus on other topics within the scope of the new human rights bill and a final report with recommendations.

The members of the Board themselves hope to continue advocating for the meaningful inclusion in policy of human rights for people with learning disabilities.

Resources

• You can read the Lived Experience Board’s first report here.
• You can read the Easy Read summary of the report here.
• The Lived Experience Board have written a response to the Scottish Government’s consultation on the Human Rights Bill for Scotland:
  • Full consultation response
  • Easy Read summary
• Read a selection of blogs about the Lived Experience Board by visiting the SCLD News & Blog page.
• Download the Lived Experience Board’s presentation to Minister for Older People & Equalities, Christina McKelvie MSP.
• Download the report Solving the Human Rights Puzzle here. There is also an easy read version.
• The Lived Experience Board met with a member of the Human Rights Bill Team to give their feedback on the bill consultation process. You can read the full PowerPoint presentation here.
• The Lived Experience Board met with the wider Human Rights Bill team for a knowledge exchange and to put across their key concerns about the Human Rights Bill. You can read the full PowerPoint presentation here. You can also read a blog about this meeting here.

More information

If you would like more information on the project please contact SCLD’s Human Rights Engagement Advisor Sarah D’Agrosa, sarah.d@scld.co.uk.