12 December 2021

‘Sure, there’s nothing wrong with you!’ familiar words heard by many people living with a hidden disability. On International Day of Persons with Disabilities (Friday, 3 December 2021) the ONSIDE project (ONSIDE) is calling on disabled people, especially those with a hidden disability, to ‘tell their story’ to empower others and instigate change.

ONSIDE is an EU funded, cross border service which improves the health and wellbeing of disabled people by reducing social isolation through digital skills and support.

The ONSIDE project is supported by an award of €5.56m by the European Union’s INTERREG VA Programme, a programme managed by the Special EU Programmes Body (SEUPB). Match-funding has also been provided by the Departments of Health in Northern Ireland and Ireland.

Emma O’Neill, Research Coordinator said “This IDPwD we are hoping to raise awareness about hidden disabilities. Many of our participants tell us they feel overlooked because their disability is not a physical one. If someone uses a wheelchair or is visually impaired, it can be easier to understand the difficulties they might face and to support them but with a hidden disability, a lot of the time the public would never know how best to support or enable this person. The most basic thing we can do is communicate with empathy rather than using terms like, ‘you don’t look disabled’ or ‘sure, there’s nothing wrong with you’, we can use ‘tell me about your disability’ or ‘what can I do to support you?’”

Michael McConway, ONSIDE research participant: “The stories gathered through ONSIDE’s personal testimony research reveal those living with a hidden disability find it exhausting to constantly explain their condition to others and how it might affect social interactions. Disabled people are proactive members of society with a shared identity and a unique voice but are often stereotyped as passive receivers of care. On this IDPwD, I would encourage people with hidden disabilities to tell their own narratives and challenge the stereotypes projected by society. ONSIDE’s peer research is carried out by stakeholders with lived experience who are passionate about using their voices to lobby for informed decisions regarding service provision and legislation for our community of disabled people in Northern Ireland.”

Commenting on ONSIDE’s ongoing peer research Emma said: “We are interested in hearing from anyone with lived experience of disability about the barriers they face but more importantly how they have overcome those barriers. Nothing about us without us, this adage is true. How can we change or challenge issues facing disabled people if we don’t ask and involve them in making those changes? Our research will be used to not only inform disabled people, but we will be lobbying policy makers to ensure these voices are listened to and put at the heart of decisions regarding disability legislation and law”.

To get involved contact Emma O’Neill emmaoneill@disabilityaction.org or call 028 9029 7880 or 00353 1873 0455 or find us on Facebook, Twitter and Instagram.