I remember it clearly, it was during the 90’s and the experts insisted that it would be better for me to feed myself than have someone feed me. So thousands of dollars were spent on consultants and equipment to theoretically allow me to eat a meal with my own hands. It was a total disaster: My CP not only made my arm movement slow and awkward but the mental effort of doing the work often physically tired me out.
This was on top of never having a hot meal, never being able to eat foods that I loved because they could not be prepared in such a way as they could fit onto a spoon, and of course the mess that I invariably made trying to get food from the plate to my mouth. Then of course there were the special plates and the plate guards that I always had to take with me when I went out for a meal in a restaurant. All the prep work that went into converting a meal into something I could eat also meant that any positive presentation of the food was lost to me, making meal even less enjoyable. And to top of everything else a staff would have to sit with me while I ate in case I started to choke or cough. Have you ever tried eating when someone is watching and judging your every movement? Let me tell you it’s not fun. Because of this enforced program supposedly toward independence, I lost weight, I was miserable, I did not enjoy eating at all, and my health suffered.
All the while the experts told me I would improve, I had to practise and this would help me grow and become more independent, and wasn’t that a good thing?
In 2000 I moved to a new service provider and I put my foot down. I wanted and needed help to eat period end of story. Well it took a bit but the new staff finally listened and they started to feed me. With that and a few other changes I started to gain back the weight, I felt better, and I started to enjoy meals again. Overall my quality of life improved even though I was less independent.
Which for me begs the question why was everyone so blasted concerned about my independence in the first place?
Looking back, I now believe that the reason that everyone cared about independence more than my quality of life was because factors that go into independence can be charted, and factors that go into quality of life can’t. Why is charting so important? Because it can be graphed, reported on and use to justify all the money being spent to support an individual with a disability, which in turn justifies the expert’s paycheques.
Quality of Life on the other hand isn’t easy to chart. It means talking to the person with the disability and asking open ended questions that the expert can’t guarantee the answers to: like ‘how are you feeling?’. It means a move away from a medical model to something more holistic something less ‘scientific’. It means trusting people with disabilities and their support networks are not squandering the government’s money.
And yes becoming more independent in the basic acts of living, like feeding oneself, can improve one’s quality of life. But independence has to be subservient to the quality of life. When independence becomes the main goal it is the person with the disability that losses out.