About eight years ago, not long after being diagnosed with Ehlers Danlos Syndrome and starting the re-classification process from having been labelled as 'attention seeking, malingering' patient towards 'actual genetic disorder oops we screwed up there' patient, I was seen by a surgeon who wanted to force me to have surgery to 'fix' my hips. Whilst this was a kindly man who genuinely believed he was doing his best for his patient it made an already stressful and traumatic time in my life far more frightening than it needed to be. The idea that benefits conditionality could be added to the pressure I was facing in that situation sends shivers down my spine, even all these years on. Then refusing surgery meant that I lost access to physiotherapy and any non surgical supportive treatments from the hospital which meant I was left to learn to deal with my newly diagnosed genetic disorder entirely alone, but as I knew the proposed surgery would leave me unable ever to walk or independently mobilise again, going it alone was making the best of a bad situation. Had benefits conditionality been applicable as recent government proposals indicate may become the case then I would have had no choice but to go through surgery which would have vastly increased my pain and disability.
It may or may not seem reasonable to you to restrict access to cash benefits in the case of addiction - there are various arguments for and against, and it is likely to be viewed as a popular policy by politicians. But, hidden within this idea is something far more sinister - that this policy could be rolled out to other conditions. In fact officals were keen to stress that "once the principle was introduced into the benefits system it could be expanded to other ailments" an idea those of us with existing 'ailments' find terrifying. It could mean that people are forced to participate in 'treatment' processes which would be hugely damaging to their health because the alternative means conditionality on the benefits they rely upon to feed and house themselves.
What appears on the surface to be a politically attractive policy playing beautifully in the pages of the Daily Mail has dangerous implications for us all. It is only a couple of generations ago that young women were routinely hospitalised against their will for behaviours we now understand and empathise with. Those treatments supposedly in their best interests such as Electric Shock Therapy or leucotomy are now either discredited or used only in a tiny minority of cases where no other option exists. My great aunt, who is still living, was forced to have a leucotomy when she was a young woman suffering from what we would know now as post natal depression. Although she was undoubtedly mentally very unwell, who knows what her potential recovery or decades of post leucotomy life would have been like had she not been forced to have such a 'treatment' deemed to be in her best interests. Multiple Sclerosis was commonly known as the 'hysterics disease' until as recently as the 1950's when modern scanning and research techniques proved a biological cause. It would be easy to dismiss these as mistakes from a previous time, but the attitude towards patients diagnosed with ME is remarkably similar in the general disdain and lack of empathy displayed towards such patients by the medical profession and wider society. The 'treatment of choice' these days for ME is graded exercise and therapy, based on the presumption that ME must be a psychiatric illness. It seems that lessons about MS have been entirely forgotten in the contemporary attitudes towards ME.
My own memories of battling with that surgeon still haunt me. Like all surgeons his primary role was to operate and to 'fix' people and so I find it difficult to blame him for thinking surgery would make me better, but his inability to accept that the surgery he proposed would be utterly disastrous for someone with Ehlers Danlos Syndrome was the real problem. Despite knowing absolutely nothing about Ehlers Danlos Syndrome he proposed a surgery to break both my hips and re-set them in a 'better' position. My protestations that would be incredibly dangerous and pointless for someone with a connective tissue disorder were brushed away with the insistence that it wouldn't affect any of my soft tissue because he was only going to break bones.
Living successfully with a disability or chronic health condition is only possible when one learns to be independent, to have control and autonomy over your life. It is extremely challenging to do that both psychologically and practically because services essential to that independence such as social care or long term psychological support are impossible for most people to obtain. To add to this burden by removing the most fundamental right we all have, to have control over what happens to our own bodies, takes society into a dark and dangerous place, led there by stigmatisation and resentment of people who 'just don't know what's good for them' and an outdated, paternalistic idea of 'doctor knows best'.
My Doctor didn't know what was best, despite his best intentions. Fortunately I was well informed and stubborn enough to stand up to his best intentions, holding out for my own. That battle and all the others it created meant it took months away from what I needed to focus on, which was learning how to cope and to live life with the level of disability I had. If my ability to feed and shelter myself had also been conditional upon what my doctor thought best for me I would not have been able to make that choice for myself, or to avoid surgery which would, quite literally, have crippled me for life. Are we really going to allow society's disdain for addicts to take us back decades to a time when Doctors knew best and give them the power to act regardless of consent?