Julie Helen: 'In that moment, it felt as if my body wasn't my own'

Sometimes, having a physical disability gives me a perspective on things that I don’t expect, when I don’t expect them.

Last week, at an appointment about my wheelchairs, I had occasion to be suspended in a sling by a hoist. Part of the measuring process for therapeutic seating requires me to be landed into position seamlessly so that the mold or cast can be manufactured precisely for my body.

Many disabled people use hoists and slings often as an integral part of the equipment they need. I have been hoisted a sum total of twice ever. The first time was in September 2025, when I was measured for a back mold for my wheelchair and then again a few days ago. 

This recent time, should have felt a little easier because I had experienced the feeling of the silk fabric around my limbs, the clipping and manipulating to make it safe, the movement across the room and the landing. It all still felt so alien to me and made me feel very passive in my own movement. The feeling of my body changed and there were other people in charge. Those people were extremely kind, caring and competent, but it still felt a kind of unsettling that is difficult to describe.

One of the elements of being in this particular hoist means that my weight is on show to the room. I was taken aback by that on the first occasion because the professionals could see the number but I could not. I asked for the number because I prefer to have all the available information so that I can make informed choices about my life. A year ago, the number was too big, not frighteningly so but still enough to make me want to take action.

This time, as I was suspended in the air, the same group of people could see the numbers, and one of the ladies holding me whispered them. I had gained just over a kilogram of weight. She didn’t say that, I had just done the maths in my head. 

I could feel tears sting behind my eyes. I had tried hard to eat well and exercise and the number rose rather than declined. My body gives me away easily, especially if the people around me know how cerebral palsy works. I gulped back tears as I was landing and my body tightened. When I am in the casting situation, one person is really close to me, manipulating all the parts of my body to get good measurements. The others stand back. The lady measuring me started asking me questions about my house and the details and her kind touches were telling me, she knew I was struggling and she was trying to distract me. It worked to a large degree and I was very grateful to her. Being in that situation felt very vulnerable because it felt as if my body wasn’t my own, that it is something that needs to be poked and prodded and shaped to the way it should be.

The rational part of me knows that a woman’s weight can fluctuate on a monthly basis, not to mind in the space of a year. In that time, the therapeutic efforts of my new wheelchair have changed my back and minimised the hunches I have making me look better. Now we are on to the second step of trying to take more tension out of my legs. In all the process, the others in the room were delighted with my progress. I realised that how I feel is most important and I have more work to do.