I’ve been up to London a couple of times recently for work, supporting some people who have a learning disabilities to take part in a Guideline Committee for NICE. It’s the first time that they have involved service users who have a learning disability in the production of their guidelines, and they are keen to make the process as accessible as possible.
At the start of the process they have asked the committee members, “How can we support you to participate?” I think this is a great question. But I think we’re at risk of creating unnecessary divisions if we only ask it of people who have a learning disability.
You don’t need to have a learning disability to have support needs. Some people have hidden disabilities, some people have mental health difficulties, we all have our own things that help us participate in meetings or at social gatherings.
We should be asking everyone, all the time: “How can I/we support you to participate?”
I am a fidget and a day dreamer. If I have to sit and listen to presentations, I move around in my seat and start thinking about something else entirely. I try, I really do, but I can’t sit still and focus unless I am doing something with my hands. I don’t think this is uncommon.
So I knitted throughout the all-day meetings. I hoped I was being inconspicuous, but a lot of people came up to me in the break to ask me what I was making. They weren’t suggesting that I wasn’t listening to the presentations, but I became defensive.
“It actually helps me concentrate on what’s being said,” I explained to the fifth or sixth person. “But I do worry that the chair thinks I’m being rude.”
“But they wouldn’t think that if you were doodling,” one person replied. “And it’s only because doodling is a more socially acceptable way of keeping your hands busy in meetings.”
The point is, if there chair had gone around asking everyone “How can we all support you to participate?” before the meeting started, I could have explained why I was knitting and stop feeling guilty for doing so. Everyone else could explain the adjustments that needed to be made to ensure they were able to follow what was going on. We would become more understanding, accepting and tolerant of other people’s needs. The space would be a much more accessible one.
I think it works for pub settings too. Nobody would need to feel, for example, uncomfortable with their back to the door, or suffer triggering conversations in silence.
What do you think? Do we need to get better at asking people what they need? What do you need to participate in certain situations?