Interactions with people with profound intellectual disability are often described as difficult, challenging and problematic but they can also be enjoyable, fulfilling and rewarding. While they may be considered complex and demanding, I often think they are beautiful in their simplicity.
A swan metaphor comes to mind when I think of these interactions.
Just as a swan gracefully moves on a lake, a picture of elegance in motion, interactions with people with profound intellectual disability can appear simple and inconsequential. A smile, a squeeze of a hand, a subtle lifting of a finger or a nod of a head. However, what is hidden from the eye and known only to the swan is the storm being kicked up beneath the water’s surface by the swan’s webbed feet propelling the graceful motion. With this knowledge of what’s unseen, a seemingly simple and inconsequential smile becomes ‘I’m happy to see you’. A seemingly simple and inconsequential squeeze of a hand becomes ‘I’m here’. A seemingly simple and inconsequential lifting of a finger becomes ‘I need you’. A seemingly simple and inconsequential nod of a head becomes ‘yes’…or maybe not. This marks the point where these interactions become complex.
I sought to explore some of this complexity in my PhD research when I looked at how interactions involving people with severe/profound intellectual disability are navigated. I used Classic Grounded Theory to undertake this work. This method requires the researcher to ask, ‘What is the main concern of the participants?’ and ‘how do they resolve it?’ After observing video recorded interactions in 3-5 second intervals and interviewing interaction partners of people with severe/profound intellectual disability, I found that participants main concern was that the person with severe/profound intellectual disability may become isolated or lonely because of how they communicate.
How do participant’s resolve this concern? They interact.
Simple? No, not really.
People interact to bring about a sense of belonging. However, the difference in communication and interaction skills between people with severe/profound intellectual disability and their partners is such that they must actively seek a space where their communication abilities overlap. I term this reconciling communication repertoires. This is not easily achieved. It requires a lot of effort, time, shared experiences. It requires commitment and openness to learning.
Visualise the dancefloor at a wedding. It is beautiful to watch a couple who have spent most of their lives together glide around the dancefloor in perfect harmony, knowing each other’s movements and patterns. They have found their space where their abilities overlap. You could say they have reconciled their dance repertoires. This only comes about after several dances where toes were stepped on, other couples were bumped into and clumsiness ensued. They have expended the effort, spent the time and shared experiences in a committed and open way to learn about each other.
Now think of the young couple who only met a few months ago and this is their first wedding together. Their dancing would not usually be described as elegant, gliding or harmonious. However, if they expend the effort, spend the time and share their experiences in a committed and open way, they too will (or might) elegantly glide around a dancefloor in perfect harmony (eventually).
Interactions involving people with severe/profound intellectual disability require effort, spending time together and sharing experiences in a committed and open way in order to learn about each other’s communication methods and style. When this happens, a sense of belonging is nurtured and the risk of experiencing isolation or loneliness is reduced. When this happens, a seemingly simple and inconsequential smile becomes ‘I’m happy to see you because you’re you’. A seemingly simple and inconsequential squeeze of a hand becomes ‘I’m here with you’. A seemingly simple and inconsequential lifting of a finger becomes ‘I need you with me’. A seemingly simple and inconsequential nod of a head becomes ‘yes, you understand me’.
Dr. Anne-Marie Martin is a lecturer in intellectual disability nursing in the School of Nursing and Midwifery, University College Cork. Her work with children and adults with severe and profound intellectual disability led to her interest in researching communication and interactions involving these individuals.
Anne-Marie can be contacted via email: [email protected] or twitter @am_martin_