Helen Keller wrote of her experiences that ‘Life is a daring adventure or it is nothing at all. (Helen Keller, Out of the Dark page 45).
It is of huge significance to me that her biography was given to me by the ward sister on the children’s ward at Moorfiels Eye Hospital in London on my eighth birthday. I had just had what was hoped, pre-op, would be corrective eye surgery for bilateral ptosis, semi paralysed eyelids. The hope had been that with more light getting to my retinae my sight would improve. Although cosmetically it helped with the facial disfigurement a little, it left me unable to fully close one eye for the rest of my life. My sight didn’t alter a jot.
I’ve often wondered subsequently whether the sister knew that despite my operation my sight could never be corrected and that I was soon to be registered partially-sighted.
It was an inspiring choice of present. I’ve read it several times. It’s dated and a little patronising in places but it never fails to touch me, and the little girl inside so bewildered by her diagnosis.
One of the hardest things to get across to non-disabled people is that for those of us with life long impairments, this weird body without that we inhabit is our normal. We may get frustrated or anxious around what we think we don’t have; what we’re missing, but the reality is that we have little idea what you think we’ve lost. Indeed the non-disabled world seems a bit odd from the perspective of disability. I often worry non-disabled people take themselves and life a tad too seriously. Disability is a powerful lesson in arbitrariness.
I was born in 1961. My mum always vowed she took the drug Thalidomide and that this caused or contributed to the disabilities I have. They are mild compared with many. It is only in the last six years I’ve used a wheelchair. Middle age hasn’t been kind to my spine.
There are times when I have felt alienated from the Church in particular. The lack of access; good disability training and support still has the power to shock me to the marrow. I try to remain positive but it is much harder to forgive when other areas of society have made such marked efforts to move on.
In amongst the pain of knock backs, ignorance and prejudice, there have been times of acute spiritual awareness. Moments when I have sensed a provisioning for me which has gone well beyond human love or duty. I name that greater goodness God. But I’m just as happy to think of it as love, altruism or the best we can be.