Idly dilly dally dabbling on Facebook one rainy afternoon recently i came across a page for a group based in Birmingham (hello all you lovely Brummies) called Spokz People. They offer emotional support for those with physical disabilities. what caught the eye of this inveterate survey filler was their asking for people to test run a questionnaire used at the close of counselling. how could i pass that by? nope... couldn't, so made contact with them to volunteer my meagre services.
"Spokz People was set up after we discovered that many people with disabilities would prefer and would benefit from therapists who have a disability or specialise in disability. We are breaking the mould by not only providing physically accessible services, but our knowledge and experience of disability means we understand the possible issues relating to disability and are flexible in catering for different needs."
In the early hours of the following morning, festering in my pit of many quilts with Adagio For Strings playing softly, i found myself ruminating on the fact that in all my contacts with social care until i spoke with Spokz nobody has ever asked "how do you FEEL about living with disability?" though many of our fears and frustrations are the same as our able brethren there are some that are quite different and aren't often recognised or voiced. It can leave a soul feeling very isolated. The fact that i have gone to bed every night for the past couple of decades armed with books, CD's, the cat, biscuits and a rudimentary knowledge of relaxation techniques to pass the long, dark, painful hours is testament to that. in the olden days when the legs still worked i would go walking in the night when slumber was elusive, returning home weary ready to try again. when i lived on an island in the middle of the North Sea i would sit on a bench in the lee of the church, tip back the head and try to count the stars to the music of waves strumming shingle. now i can only go a'roamin in my mind and sometimes that mind wanders in darker places than a moonlit graveyard.
"The other week I was in Newcastle wheeling along Northumberland Street at a busy lunchtime. Coming in the opposite direction was a man, not paying attention to where he was going as he was on his phone. I couldn't move out the way as I was penned in by people, but I assumed the man would look up from his phone and move to get past. Instead he walked straight into my wheelchair. He then launched a torrent of abuse at me about how "people like me shouldn't go out as we just get in the way" and how the world would be better off without me. After he had finished his verbal attack, he spat on the floor in front of me and stormed off!I am not sure what was more hurtful, the fact that this random stranger saw fit to insult me, and all disabled people, in such an abusive way! Or the fact that of the dozens of people walking past on one of Newcastle's busiest street, not one saw fit to intervene! I can't help but feel if it were a racial or homophobic attack for example, that would not have been the case! How is it that one form of abuse is more acceptable than an other"
Issues such as these can make the experience of disability more traumatic than the limiting condition itself and once you add the inevitable loneliness into the mix it's surprising there isn't an epidemic of depression and despair amongst my soul sisters and brothers, maybe there is !! at a pain clinic course there was a decided split in attitude. some were full of bile and ire blaming the universe and all in it for their predicament, threatening to sue at every perceived slight and oversight, unhesitatingly venting their discontent on any willing target. others wanted to learn how to cope, seeking understanding of the mechanics of pain on the psyche and the body, willing to take responsibility for finding ways of making life livable within constraints. the latter were more inclined to find humour in little things and to grasp positives with both hands and wring them dry for every drop of potential.
This is why people like Spokz, who offer online and phone support, are so very vital, why we need more like them. it's too easy to become stuck in unhelpful ways of thinking and reacting, to allow the fear and futility dominance. sometimes we need a guiding hand to help navigate the reefs of negativity, to be reminded that we all have value not because of what we can achieve but because of who we are....