Sunday, 28 February 2016


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 premature loss of career, or the knowledge that employment will be forever  out of reach is heart wrenching.   i was blessed to have a wonderful team of people who acted as my hands and feet, without them my bizniz would have faltered at conception (you know who you are... i am in your debt and will love you all forever) but to walk ... crawl... away from it all when only early 50's, at the height of success, with a head full of dreams and ideas was one of the hardest things i've ever had to do.  many years later and i still wake weeping after dreaming, in vain, that there's a corner of The Gateshead Metro Centre still home to my little bookshop.  imagine how dispiriting it must be for a young person to know they will never have the privilege of earning a wage or being independent, forever relying on the kindness of family or strangers whilst longing to enter that rite of passage called a career.   
Bullying has become a national epidemic spurred on by the anonymity of social media, nihilistic TV soaps/reality shows and a vitriolic right wing press, but the weakest among us haven't always been considered fair game to be targeted for abuse.   it's not so long ago that the elderly were guided across busy roads or offered help with carrying a heavy load, doors were held open for a wheelchair user and seats given up on buses for the halt and frail. in 2014/2015 disability hate crime increased by 41% and when a friend knows somebody who has an experience like that related below it ceases to be yet another statistic and becomes personal, mutating into an anxiety provoking possibility with the potential to impose a severe case of agoraphobia. 

"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.... 


Anonymous said...

Hi jeni thank you for the comments much appreciated and thoughtful post!

Anonymous said...

Oh my goodness, just caught up with this post, how dare that excuse for a human being do that to you, I'm shocked. Why we're you on your own in that huge city....I'm so impressed you got there tho. Hope you had a good time apart from that incident xxxxx Sue xx

brokenbutstillstanding62 said...

sorry sue sue, think i need to rewrite that paragraph as you're the second person to think it was my experience. it was a friend of a friend who was so shabbily treated. must have been terrifying