This is a research project on pathways to meaningful and purposeful lives and employment for people with learning disabilities.1 This paper describes the value that people living with learning disabilities can bring to research and how it can help to make recommendations to improve people’s lives.
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At Healthwatch Essex, as a Research Ambassador and Service User Researcher, I have been able to use my lived experience of schizophrenia and Asperger’s syndrome. I have also been able to draw on my previous experience as a Support Worker for people with learning disabilities, and as a sibling to my younger brother Jack, who has severe learning disabilities and autism. I have been able to thematise transcripts and make recommendations based on my lived experience.
People with learning disabilities and mental health problems, like me, can feel excluded, left behind, discriminated against and stigmatised. This can leave people with learning disabilities feeling like they do not fit in, do not belong and that their chances in life are limited. They can feel forgotten about and as though they have no voice or say in important matters. People with learning disabilities also report feeling looked down on and can face bullying.
Too often, people can withdraw into themselves and be cut off from others and society, stigmatised and living life on the margins. People can become passive and docile, and feel that they do not matter and are not valued. My experiences, and the experiences of other people with learning disabilities and mental health problems, make a very strong case for involving people in all aspects of life, education, employment and in research.
The findings and recommendations noted below are derived by a thematic analysis of transcripts from co-production events with people with a learning disability.
First and foremost, according to these participants, it should be remembered that a learning disability is just one part of a person’s life.
Barriers
According to the participants, people with learning disabilities can feel out of place, different, forgotten, worthless and isolated. They can feel left behind and that they do not belong. People can struggle to become independent and there can be problems for people to grow and develop. Families can sometimes be overprotective which can limit people with learning disabilities. People in care homes, in particular, can have more limited and less independent lives.
Experiences at school
At school, people with learning disabilities reported being neglected, mocked, stigmatised and feeling as though they’re not valued or included. Participants said their dreams and aspirations are not thought about and are often disregarded. People reported being sent out of the classroom and getting excluded. Others said that exams and tests are too difficult and academic, and this resulted in them feeling left behind. Participants said there is no room for teachers to help people grow and think about a career at work.
Participants said they want and need a caring, safe and welcoming environment. Teachers need to take more time and be patient. People need to feel that they belong. Special support helps as does teaching that meets people’s needs, teaches new things and helps people with learning disabilities think about and get employment. Caring staff who value people with a learning disability and use positive emotions also help, as do staff who help people grow and follow their interests at school. Special qualifications for people with learning disabilities would also help.
Experiences at work
To find and keep employment, people with learning disabilities need the support and help of carers, family, friends and people they know and trust. Dreams, aspirations and purpose at work are important in the lives of people with learning disabilities. People want to be valued, supported and cared for at work, just like we all do. People with learning disabilities should be encouraged and need help to learn new things and tasks at work, to help them develop and grow in the workplace.
People work better in an environment where there is understanding and acceptance of learning disabilities. People at work who know about learning disabilities are a great help. People need good influences around them to steer them in the right direction.
Support at school and at work can provide a pathway to grow and develop. However, people with learning disabilities need better advice and guidance, particularly about their aspirations and career goals.
At work, people need to feel that they belong. Voluntary work is a stepping stone to paid, full-time employment. It is important to help people learn new skills, new jobs and do different things in new roles. People need space to work towards their dreams and aspirations. People with learning disabilities want to be more independent, and free to follow their interests at work.
People with learning disabilities have problems in workplaces that are too fast-paced and have lots of tasks, especially when they want the job done perfectly and efficiently. This can cause job dissatisfaction and people will blame themselves rather than the workplace.
Finally, people with learning disabilities need in-office help and support. They work best when they feel cared for and supported (like in a family or a good school). Work can help people understand and know themselves better, which helps people feel that they belong and fit in. Following others around the workplace (mentoring and shadowing) can help people learn from others. New jobs roles and activities are important in helping people grow and develop their skills in a career. Flexible working (which helps people choose their working hours) is good, as is a role where people have a say in what they do at work.
| Experiences in the workplace | Desired improvements |
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The key findings and recommendations noted above are by, about, involving, analysed and written by someone with a learning disability. This is a novel approach and perspective that offers the unique insight of lived experience research.
People with learning disabilities can feel excluded and stigmatised in general life, education, employment and also research. People need to feel that they belong.
I have been made to feel involved and valued by the team at Healthwatch Essex, including Samantha Glover (Chief Executive Officer), Dr. Kate Mahoney (Research Manager) and Dr. Tom Kerridge (former Senior Research Officer) who lead the way on lived experience research and co-production.
The team promoted the best level of research involvement in what I have termed the ‘goldilocks zone’: not too much work (which might be stressful), not too little work (which might make you feel not fully involved), but just the right amount of work (finding the best balance, facilitating good involvement and the best conditions for co-production).
The work was enjoyable and I felt valued, involved and gently encouraged to share my lived experience. I felt engaged in an important and worthwhile project that makes a difference in the lives of people with learning disabilities.
People said I would never work again because of my learning disabilities and mental health problems, but I was able to analyse transcripts and write up findings from a lived experience perspective. This enabled me to believe in myself more and recognise the value that I can bring to others, especially people with shared experiences of learning disabilities and mental health problems.
I was also able to draw on my previous work experience as a Support Worker for people with learning disabilities, and as a sibling to my younger brother, Jack, who has severe learning disabilities and autism. I was able to use my emotional intelligence as a carer and sibling to bring lived experience to the research themes and recommendations.
The growth in lived experience research and co-production, based on valuing and engaging people’s lived experience in all stages of research, turns the negative experience of stigma and exclusion into a more positive experience of inclusion, fuller engagement with others and feelings of being valued and accepted.
