I was feeling a bit sorry for myself yesterday morning. I was following the tweets from the National Advocacy conference. Seeing who was there and the passion of the delegates took me back to this time last year and it made me cry. I spoke at last year’s event. It was a few weeks after I started going to the gym again. I was quite impressed with the physical changes I’d made and was feeling a little cocky. I changed my presentation at the last minute and winged it quite frankly but it got a great reception. Reading yesterday’s tweets I felt envious and wished that mentally and physically I was in the same place I was in a year ago.
Lucy Series delivered a talk that covered supported decision making. I saw a quote from her piece – “Our understanding of learning disability has moved on. You don’t have to have passed a capacity test to express a will or preference”. Spot on Lucy. I’ve written about this for ages and it seems so unfair to me that learning disabled people have to go through so many more hoops than the rest of the population around normal life decisions.
I’ve had to make an almost impossible decision this week. Should I have the operation to remove the cancer now so soon after my heart attack and all the risks involved in the surgery? Or should I postpone the operation until my heart is more stable but run the risk of the cancer spreading? Ive sought a wide range of professional experience. I’ve chewed the ears of family and friends. I’ve made my decision. Some people will understand; others will think I’ve made an unwise decision. Whatever, people will assume my capacity so I won’t have to go through a process of demonstrating I have the capacity to make this decision.
What has gone into my decision making process? Of course, I’ve weighed up the pros and cons of the options. I did my Justice Baker balance sheet. But ultimately, it hasn’t been a solely head based decision. A big part of my decision doesn’t stand up to any “intellectual” scrutiny. Fears come into it. Hopes are a factor. My gut instinct has given me the most valuable data. My will and preference probably wouldn’t withstand the attention of a capacity panel. One thing is sure – for the whole week, I’ve not used the narrative of my best interests.
Steven, if we was in exactly the same situation, would not be afforded that same latitude. Nobody would have the time to give him the space to express himself fully. A combined capacity/best interests assessment would be squeezed into a couple of hours at best and a professional wouldn’t dream of exploring his fear and hopes with him. They would be considered completely irrelevant. And if he reached the same point as me and come to the same decision, it’s almost certain that it would be used as a determining example that he lacked capacity. And sod that the MCA allows someone to make an unwise decision.
The sooner the UNCRPD becomes the force that it could be, the better. Capacity assessments and best interests decisions have become so discredited because they are so often used to manipulate the professionals’ agenda. Nobody ever has their capacity questioned if they’re agreeing with the professional decision.
Will there ever be a level playing field?