When I was born, it was obvious that I had dislocated hips, double scoleosis. A malformed jaw, and I was also diagnosed as being grossly mentally retarded. In those days, 65 years ago, intelligence was primarily determined by a baby's reflexes, and response to pinprick. I failed responses 101 magnificently. 22 years later it was discovered that I have a sensory neuropathy meaning I have essentially no sense of touch, taste or smell. The first myth I want to get rid of is the one which says that if you're born with a disability you automatically know how to cope with it, and that you don't have the need to grieve for the life possibilities which were never there. Not true. And sometimes the Bible gets in the way. We're all familiar with the verses which state categorically that physical infirmity is of course the consequence of either sin, sometimes generations back, or else evil spirits,. One passage which gets me going is the beginning of John 9, where Jesus is asked whether the man's blindness is his fault or the fault of his parents. Jesus apparently replies "Neither this man nor his parents sinned, he was born blind so God's works might be revealed in him". A bit tough on the man, I reckon. I appreciate Explorers meetings where we're able to look at such verses a little more robustly, and our studying of the Jesus Seminar teaches us that not all of the sayings attributed to Jesus were necessarily His words, but words the writers thought would fit with how they saw His teachings.
And people. Well, in my tutorials with nursing students, medical students and occupational therapists there has been a wide variety of questions. Some good but predictable, like how do I determine water temperature in the shower and so on, and how do I cope with eating. The food one is quite a hard one for others to understand, the idea of not experiencing taste or texture is hard for others to imagine, but I answer by saying that I choose food by what I can safely manage; as I canâ€™t feel things in my mouth I need to be very aware of the risk of choking. I'm reassured if I see shiny cutlery, as I know then that I can see my reflection in the blade of the knife, and can check that my face is clean. Some questions make me fear for the safety of society when the students are released into an unsuspecting public; questions like "Do you think your life would have been different if you didn't have physical impairments?". And one very vocal student, who after hearing that I was still able to drive in spite of not feeling my hands or my feet, raised his hand yet again, and asked me where I drive. I usually try to be gentle with the students, but on this occasion I decided to enjoy myself, so after pausing for a second or two, I replied that I do try to avoid the footpath.
On a more personal level, I found a book years ago which had a profound impact on me. It was about chronic illness, and responses to it. It made the point that traditionally in our culture, in order for society to function, individuals are required to not be too open about the emotions involved. This goes for family as well; I was made aware at a very early age that some of my family members saw my disabilities as being their cross to bear. It also applies to the wider circle of friends, and to the medical profession. In my experience, medical professionals are somewhat uncomfortable with patients responding emotionally. Bureaucracies donâ€™t necessarily help, and it's also fair to say it's true of some parts of the Church. When I was involved in the Charismatic movement I was a sitting duck for those wanting to pray for me. In the end I began saying if you want to pray for me that's great, I'll take all the help I can get, but don't pray for healing, pray that I'll be given the resources to cope with whatever I have to deal with. This attitude of needing to fix things is quite common, and I suspect partly comes from our very human discomfort with difference, and also our discomfort with powerlessness. Unfortunately, this lesson of trying not to burden others with my problems means I have to learn to give myself permission to be more open sometimes, when it feels safe. That's a hard one for me.
The practical stuff on caring for people with disabilities is easy; keep walk ways uncluttered, make seats available, if you know someone uses a wheelchair or motorized scooter make sure they can be accommodated without reshuffling chairs AFTER the person arrives. Some don'ts; if I offer to take on a task, please don't decide for me that it's too much for me to cope with. Feel free to offer help, by all means, but please don't try to organise me, I can be very uncooperative if I feel I'm being "managed". Those are the easy ones. Baron von Hugel, a Modernist Christian Theologian in the early 1900s wrote "Christianity allowed the soul, encouraged the soul, to sob itself out" One thing which is not so easy to provide, and which I and I'm sure many others need, is feeling that we do have permission at times to say that we DO mind the fact that pain is constant, that exhaustion is constant, that the feeling of being "other" is hard, that every new acquaintanceship will probably develop into a disability awareness exercise, and that we DO mind that things are not going to magically get better. Another need is to have people who will remain with us in our pain. There are two miracle stories in the Bible demonstrating different aspects of this. One is the story of the man waiting by the pool of Bethesda; his friends took him there every day, which was kind, but they didn't remain to help him into the pool; hit-and-run caring? The contrast is the story in Mark 2 of the man whose friends lowered him through the roof to get to Jesus. Maybe that could be called follow-through-caring, if you'll pardon the pun.
I'd like to finish with a poem, and indeed you could call it my prayer.
You look at me and see the problems; I'm ill again, still, full of problems still, still struggling, still handicapped.
I want to cry out Don't look at the handicap, look at me. There's me in there, give me credit for full reality, for my intelligence, for my own validity, I'm not the struggling creature that you see.
But, impossible demand, I need you also to know my pain, to see the shape of my wound, feel the burden of my handicap which I always carry around, always noticed, never found.
I need you to see me, to know my handicap so well that you look right past it, for when you vest me with that dignity, then I can admit paradoxically that I am the struggling creature that you see.