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Research on Intellectual Disability Stigma

Our work is based on a firm conviction that intellectual disability stigma needs to be challenged at multiple levels.

levels

To this end, alongside our research focused at the intrapersonal, familial and interpersonal levels, we advise relevant bodies on how to achieve structural change. Organisations we have provided such advice to include: the Royal Mencap Society, Special Olympics, and the United Nations Committee tasked with overseeing the Convention on the Rights of Persons with Disabilities (CRPD).

We have also published a call for more action to tackle intellectual disability stigma aimed at a global audience: (16)00060-7/fulltext 

Current Research Projects


1. The STORM programme

STORM Manual Cover

This project consists of the development and evaluation of a new psychosocial group intervention designed to increase the capacity of people with intellectual disabilities to manage and resist stigma. The intervention developed as part of this project is called STORM (Standing Up For Myself). It draws on cognitive behavioural and narrative approaches, as well as liberation psychology in aiming to support people with intellectual disability to cope with and stand up to the stigma they often have to face on account of having an intellectual disability.

An initial pilot of the STORM programme was funded by the Baily Thomas Charitable Fund and completed in September 2018.

STORM Pilot Project Team

Members of the STORM Pilot Project Team at a celebratory event in September 2018 concluding the pilot project.

We are currently conducting a feasiblity and pilot study funded by the National Institute of Health Research (NIHR) Public Health Research Programme (project number 17/149/03). This study is being conducted in partnership with Mencap and the Foundation for People with Learning Disabilities. 

STORM Project Expert Advisor Panel

We work closely with a team of self-advocate advisors from the Elfrida Society and Mencap who advise on all aspects of the project and are also members of the STORM Study Management Group. The Expert Advisor Panel meets regularly to discuss new ideas, evaluate materials and debate important aspects of the study. The Panel's meetings are co-chaired by one of the self-advocates and Christine Koualla-Burke from the Foundation for People with Learning Disabilities. The Panel is actively engaged in presenting and co-presenting the project and to date has presented findings from an initial pilot of the STORM Programme at the Open University's Social History Learning Disability Conference in July 2018 and at a UCL conference in September 2018.

STORM Expert Advisor Panel

(Left to right) Celia Brown, Paul Davies, Harry Roche & Adrian Brown

2. How parents of children with intellectual disabilities and/or autism respond to and manage stigma they may experience

This study aims to explore how parents of children with learning disabilities and/or autism manage stigma they may experience in their daily lives, in relation to their child's disability. ‘Affiliate stigma’ occurs when associates (e.g. parents, other family members, partners and friends) of a person who is stigmatised in society find themselves the targets of Stigma (i.e. negative stereotypes, prejudice and/or discrimination). At times these associates internalise stigmatising attitudes and beliefs. Recent research by UCLUS (Mitter, Ali, and Scior, 2018, 2019) shows that parents of children with learning disabilities and/or autism are often vulnerable to affiliate stigma and can internalise stigmatising beliefs which can affect their view of themselves, their mental health and well-being.

By exploring this topic, we hope to gain an understanding of how parents respond to stigma associated with their child's disability in the moment, what strategies they may use to resist stigmatisation, and how they build resilience to others’ negative responses. It is hoped that sharing the insights from this research will help to support other parents of children with learning disabilities and/or autism in resisting the negative effects of stigma. 

How can you get involved?

We are looking to recruit a small group of parents of children aged 10 and under (the group this study will focus on) to help guide this research project and advise us on the best ways to help parents speak about stigma they may have experienced. We will invite parents who are interested in becoming an adviser to this project to meet with us in person or to speak over the phone if more convenient to hear their views on the research project and the materials we are developing for this study. We will be guided by what fits best for you and will reimburse you for your time and travel expenses.

If you are interested in advising us on this study and would like more information, please contact the lead researcher: rachel.ransley.14@ucl.ac.uk

3. Other Projects

Other projects under the umbrella of UCLUS seek to advance our understanding of intellectual disability stigma, its impact on people with intellectual disabilities and their families, and effective ways to challenge stigma faced by people with intellectual disabilities. Below is a list of researchers and current projects they are leading:

Nikolaos (Nikos) Sarras

Nikos is a trainee clinical psychologist at UCL. For his thesis, he is exploring what enables self-advocates to resist stigma in their everyday lives and what can get in to way of resisting negative attitudes and behaviours. This project is supervised by Katrina Scior.

Abigail (Abi) Goldsmith-Sumner

Abi is a trainee clinical psychologist at UCL. For her thesis, Abi is developing a measure of stigma resistance in individuals with intellectual disabilities, under the supervision of Katrina Scior and Andrew Jahoda (Glasgow Univ.).