Unlocking a lifetime of silence

People with intellectual disability are now living longer. As they get older their needs and their lives change and it is important that we understand what this means. But how do we capture those needs and experiences? The Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing (IDS-TILDA) is doing exactly that.

Each year that IDS-TILDA interviewers go out to interview people with intellectual disability for this study, they discover that most people have a lot to say, even if they had barely spoken before.

Before they go out to complete the IDS –TILDA survey questions, all field workers undergo a 3 - 4 day intensive training programme with major emphasis on communication, effective interviewing and the use of easy read materials.  They are also encouraged to first ask questions of the person with an intellectual disability themselves. Sometimes others may speak for the person, but for so many questions, how is a key worker able to know how the person actually feels?  If the person cannot answer such questions for themselves the answers sometimes need to stay blank.

During the most recent interviews, one interviewer had an incredible experience. The person with an intellectual disability being interviewed had barely spoken in years. It was supposed to be a short interview but the person started to talk and as words built on words the person got visibly excited. The whole experience of watching and listening as a person who never speaks told their story and expressed their feelings brought both the key worker and the interviewer close to tears.

Prof Mary McCarron, Principal Investigator for IDS-TILDA emphasises that this is not the only example.

'Over the years I have seen how we have literally unlocked a lifetime of silence simply by engaging with people who have intellectual disability and inviting them to talk about how they feel about ageing and what their needs might be. It is an incredibly humbling experience, but it is great to know that we can make such a difference'.
Link Back: The IDS-TILDA project receives funding from the Health Research Board. It is also made possible by the ability to access participants through the HRB's National Intellectual Disability Database (NIDD).