I’ve been reflecting on my career lately. Which led me to think about my values; what makes me “tick”? My values are about seeing the potential in everyone, and changing things that cause inequality or injustice. But why is this on my radar, and perhaps not on everyone’s?
This blog is about one relationship that was very important to me growing up, and shaped who I am today. I’m going to use a made-up name: Sarah.
Sarah was a lady with significant Cerebral Palsy. Her speech was intelligible only to those who knew her best. She was fiercely independent, with a filthy sense of humour and strong sense of what she did (and didn’t) want.
My mum was a single parent, working as a Speech Therapist for the “Spastics Society”, as it was known then. This meant that during school holidays, I would go with her to the day centre. I was introduced to Sarah one half-term, when I was about 7 years old.
I just loved the day centre. The atmosphere was friendly, busy, and fun. There was a chap (who happened to be a “service user”) who ran his own dating agency in a little office upstairs. I don’t remember too much else, except spending many happy hours sitting around a table, filling small plastic bags with Trivial Pursuit pieces – each bag requiring a “cheese” and the right number of “wedges” (known as piece-work; common in Day Centres in the 80s, but rarely seen nowadays).
Whilst I was sorting "cheese", Mum would have a regular appointment with Sarah, who was essentially non-verbal and literally pushed, in her wheelchair, to one side. However, there was nothing at all getting in her way intellectually. Think Steven Hawking. Mum spotted her potential and made her a basic communication board. Sarah learned to point to letters of the alphabet and frequently-used words. It was slow, it was hard, but she could communicate. O-n-e l-e-t-t-e-r a-t a t-i-m-e.
I started to spend more time with Sarah. It was fun to work out what she was trying to say. I enjoyed the process of following her finger with my eyes. She did big, jerky movements to begin with, which she gradually brought under control until her finger rested on the required letter. Then again, and again. It felt kind of magical. I’d say something in reply, and we’d begin again.
“Hungry”, “thirsty”, “cold”, “hot” – ok, these things are essential but boring. What kept me hooked were the filthy jokes – forgotten now, but it was great because Mum couldn’t hear them. Silently transcribed, letter-by-letter.
The laminated alphabet board was eventually replaced with a computer, thanks to Mum. A head-switch, a screen, and a huge hard-drive to be carried everywhere on the back of her chair. Another learning curve. Another breakthrough in the speed, expressiveness, and accessibility of her communication. More jokes, a deeper friendship.
The last time I saw Sarah, Mum and I went to visit her in her own flat. Her own flat! The previously silent lady, in the corner of the room, now had her own voice, her own care team, and HER OWN FLAT! She could answer the door and turn the lights on and off. This was the 1980s. We tend to think that assistive technology and self-directed support are new. I know they are not. We have hardly moved on.
Individuals who believe that everything is possible (like my Mum), can make a life-changing difference to other people (like Sarah) through their work. Sarah, in turn, made a life-changing difference to me. This is what has inspired me, influencing my values, my outlook, the work I have since chosen to do, and the work I hope I will do in the future.