I know what it is like for folk to think your world view is crazy – so the more off the wall the view point, the more likely I am to say, “Well, maybe you are not the one with the problem.” The world could do with a few more people thinking outside the box: anyone can let someone else do their thinking for them.
As a person with mild disabilities, my own personal ‘off-the-wall’ view is that normal people don’t mind WHAT we do, as long as it is acceptable to them, and I find it is a view shared by not a few other disabled people. We have the opposite problem to most people in the modern world, who find themselves overwhelmed with responsibility for themselves and others. We spend too much of our lives being treated like children when we want to be treated like adults, too much time being told what is best for us, too much time doing what others want and then even if we manage to break free, too much time seeking approval or confirmation of our ideas about our world, when we really had a pretty good idea that we were on the right track in the first place.
We all want to make our own rules, only some are more equal than others in the rules-making stakes. It was decided for me what I would wear, who I would marry and that I would not have children. Now the media decides whether I am worthy of funds, of respect or of freedom from abuse. So now the rules others make are what I fight. How you perceive, experience and function within your world is how it is, and if you feel it is not as it should be, this is not always as crazy as society would have us believe.
There is a poem by a man who spent some time in Bethlehem Hospital (Bedlam) :
“They called me mad
And I called them mad
And damn me,
They out-voted me.”
At the moment I want nothing much to do with the N.H.S. This is not pathological, or paranoia on my part: my husband is suffering battle-fatigue on this too, and he has had fifteen less years of my medical appointments than I have. We both feel raw and would happily never see another N.H.S doctor, GP, test, lab technician or psychologist.
I never felt less like melt-down last year and yet everything that could go wrong had gone wrong. As I looked around on Christmas Day at those who were reverently celebrating the birth of a baby two-thousand years ago, or opening gifts with loving relations whilst my husband and I sat in shock and heartbreak watching our dreams drain away with no-one to speak to about our pain, lest we spoil their festivities, I discovered that there is no ‘perfect guru’ and for the first time in my life I wanted to make my progress alone.
Then as 2013 unfolded and we lost two further family members in as many months, I realised that I did not NEED anyone else to tell me how to be or feel, because some things can _only_ be done alone. I gained so much confidence that I realised that in the past thirty-five years the rule-makers and the alleged sane, by denying the experience which I saw and described to them had made it impossible for me to see the truth; that that ideal of the super-disabled person is a cover for hard slog, and for the rest of the world’s refusal to hear our versions of our lives – or in other words – bull**** and that in seeing through the bull to the lies beneath, I had always been sane -if pessimistic- and certainly not alone in my beliefs.
I am ready to say, to the psychologists and Social Workers, self- appointed advisors and friendly bunglers of the realities of my life, “Yes, I am assertive, I am and always will be a work-in-progress but your work is done,” but as my medical, psychological and Social Services notes are full of errors and misinterpretations- right down to a diagnosis of P.T.S.D. based on the fact that I shake when stressed- a symptom common to people with spastic cerebral palsy but apparently unknown to the British Council of Psychotherapists- I find I have rather a lot of contact time with the N.H.S coming up, in which I hope we will be reviewing a few things.
There is a little help out there but asking others for support may well dig you in deeper to the pit of dependency and leave you with fewer answers
-or certainties- than you started with. Believe in yourself- however small a kernel of belief. Your world view may be right and it may be the world that is mad.