Skip to content
2 LD Week Quotes 2023

Alec’s Story – How we can all listen and learn

Alec had been supported to move out of Merchiston Hospital into a group home. He tried to get out of the house and went through an upstairs window. It was the only route available to him, the doors were locked. He hurt himself, he was deemed too risky, he was returned to hospital.

Lots of things were written and said about Alec. It was strange that no one mentioned that he liked to curl up behind people, cat like on the cold wipe clean ward furniture, as a way drawing heat and comfort from strangers. Alec was seriously underweight and was constantly looking for things to eat. This was put down to his diagnosis of Pica*.

He would eat very fast and vomit. We were told tales of him once eating a whole kiwi fruit, skin and all. He would ‘steal food’, so everything was locked away. No one asked how you can steal food in your own home, or what alternatives are at your disposal if you are starving.

The system that made sense in that environment was for Alec to eat last. He would sit at the door watching through the panel as everyone else ate their food, and finally when everyone was finished, he would be allowed in to eat his dinner. He would often eat it so fast he would vomit afterwards and that would be it, until the next mealtime.

When Alec moved, we looked for a house with a garden and enough space inside to walk around. A place where he could be himself and that we could learn to listen to him and how he wanted and needed his life to be. Professionals advised against allowing access to grass, pebbles, a water feature and even the hedge. His team thought they could support him to access these things and more, safely…and they were right.

Alec loves walking. Years ago, I remember one of his team describing how they would pack a bag with lunch and his travel pass and head out for the day. She would follow wherever Alec led. If he headed towards a bus, they got on it. If he got up at a stop, they would get off. She followed his lead.

This to me is an example of great support. One can only imagine how transformative it must feel for Alec not just to be listened to but, to lead. All the more remarkable, when you consider Alec’s life before he had his own home and a team who know and care about him.

Sometimes the greatest insights are not found in books and are not generated by those who have degrees and qualifications. Instead, they can be found in those who know a person well and believe in them. Over years Alec’s team have learned to listen intently to him; to know and understand without words. They believe in his potential, in his ability, with their support and with the help of supportive professionals, to overcome challenges that have faced him.

The following video is another example of the difference great support can make. #BetterIsPossible

*Pica is a feeding disorder characterised by repeatedly eating inedible objects over a period of one month or more.

Blog by Sam Smith (C-Change CEO)

Listen to ‘Alec’s Story – How we can all listen and learn by Sam Smith (C-Change CEO)’. Read by Douglas Graham

Share this on social media: