About a month ago I was in the middle of watching an incredible show by Fevered Sleep called Men and Girls dance. It was just five professional male dancers and nine girls who dance for fun, joining forces for an incredible production that was a joyful celebration of movement, touch and playfulness.
As I sat watching these two sets of seemingly very different bodies come together to dance I thought about the physicality of my life. It wasn’t so much how my motor tics make my body move, or the experience of using a wheelchair to get around; it was more about the many ways my body connects with other people’s every day.
I know I get touched a lot – lifted, washed, squeezed, pushed, soothed and sometimes restricted. Physical support and intervention are key to my life. I need other people’s bodies to complete all sorts of tasks safely, from going to the toilet to playing with my niece. I also need those around me to grab hold of any sharp or hard objects I might accidentally come across, and I need them to hold my hands when I’m hitting myself, or to get me to a safe space when my tics intensify.
I’d known that I get touched a lot but I’d never really given it any specific thought before. Without taking my eyes off the show I reached into my bag and grabbed a blank ‘fit’ recording sheet from inside on which I wrote a reminder to myself which said:
“Touch, support, challenging behaviour and restraint – explore?”
The show stayed with me for several days but so did my interest in investigating the role touch plays in my life. I decided to start by keeping a diary for a week, listing every time I was touched. I recorded everything regardless of whether it related to disability or not. I realised that I wouldn’t be able to capture every single individual touch so I treated each activity or reason for being touched as a single episode of contact.
I made a note of the date, time and location; I recorded who I’d had physical contact with, the reason for it, and how it felt. After seven days I analysed the results, some of which surprised me and challenged my own perceptions.
Here are the stats:
I was touched 490 times in seven days
That’s an average of 70 times a day
91% of the physical contacts that week was disability-related
There were 8 main reasons for my being touched
The most common was mobility with transferring in and out of chairs happening 301 times
The least common reason was my challenging behaviour which happened just once
I had physical contact with 24 people
14 of those people touched me only once
The other 10 touched me multiple times, with Jen touching me the most – 126 times
I used 25 words and phrases to describe the quality of the touch I experienced
80% of the times I was touched felt smooth, matter-of fact or efficient
I had one haircut, one pat down, and was dropped on the floor once
I had a large splat of peanut butter wiped off my face
I had 7 cuddles, 15 hugs and 8 seizures
I gave comfort 3 times
And received it 3 times
I was washed with big movements and dried with soft towels
And hand over hand I was helped to do delicate acts of personal care and to eat one ice cream.
Every part of my body was touched
I was touched with love and kindness every day and was never touched with anger.
My touch diary highlights the enormous role physical support plays in my life. This didn’t surprise me but what did was how little of it related to challenging behaviour. Because this is unpleasant to experience I think it looms much bigger in my mind than other sorts of touching.
Keeping this diary made me notice the diversity and beautiful qualities of the physical contact I experience – being dried by someone is lovely and so is having your hair washed.
I also felt the enormous power of a single squeeze: when I was in pain a squeeze from Leftwing Idiot’s hand helped me through; when I was doing my nightly catheter the squeeze of my support worker’s hand gives me the moments of control I need to complete the task; and when someone was rude to me a squeeze on my shoulder helped me feel less alone.
I don’t know what if anything will become of this information but I’d love to explore these experiences more, and to see what ideas might develop. I’d also love to hear about the role physical contact plays in the lives of other disabled people. Do share your experiences if you’d like to by commenting below.
Thank you to everyone who uses their energy and strength to help me move, live and work in the way that I want to.
I don’t currently need the kind of physical support that you do (and long may that last), but as a single person with mental health problems, I have the opposite problem, I’m not touched enough. I love a hug and to be touched affectionately, it’s so good for mental health, but it’s a rare privilege.