I’m not prepared to raise the white flag yet, but it’s felt like a close run thing.
I received a very helpful, courteous and informative letter from my local MP, Drew Hendry a few days ago. He informed me that he had asked his question of the Health Minister about my position. The response was much the same as The Scottish Public Service Ombudsman. Unlike in England and Wales where wheelchair services guidelines are open to interpretation, in Scotland they’re sacrosanct it seems.
I can’t help but realise too that this response also misses the point. All the official correspondence to date relies heavily on the fact that as a partially-sighted person, and some time guide dog user, I cannot have a powered chair. My sight is too poor. I shudder to think what this says about the ‘official’ view of guide dogs? Is the health minister implying that using a guide dog as a fully trained mobility aid cannot compensate for loss of sight? Can’t be used safely to increase the independence of a wheelchair user?
These last questions hint at the bigger battle which could take years – changing the hearts and minds of those in power and educating them regarding disability in the 21st century. It shocks me that I’ll have to do this, but it must be done.
What isn’t resolved is how I get my hands on a powered chair in the meantime. At the moment I’m feeling stuffed. I haven’t the cash to fund now myself. I’m not great at begging. I haven’t the body to become a successful woman of the night. My options are limited.
The last few days have been testing as you can sense. It’s hard to explain what it’s like to be marooned in this way. I suspect that most of the people reading this will take for granted that they can go where they like under their own steam, when they like or drive a car to their chosen destination. Imagine day to day life not able to do that. Driving I have lived without, but mobility confined to a manual chair (which can’t of course be used with a guide dog – unless you like going round in circles) isn’t easy. I have limited strength to self propel at the best of times.
I am living differently. I am into my eighth month without a powered chair I can rely on. I go out rarely. I focus on doing as much as I can virtually. I am upbeat most of the time, determined some of the time; occasionally inconsolable and desolate.
I take my desolation seriously. It’s as powerful a learning curve as euphoria.
I have no end in sight regarding my future independence and mobility, so I need to engage in a marathon, not a sprint from one event to the next. This latest news was a major blow. I had hoped that the minister would see sense; seek the advice and input of the Guide Dogs Association. Clearly not. The hard part is that much as I want to get on with fighting the bigger wrong in Scotland, I need to find a way of uniting myself with a powered chair that will work with a new guide dog. Fast.
Although well meant information, it was heart-breaking to hear that one NHS Trust in England has recently not only agreed to fund a powered chair for someone who has neither had a guide dog before (I’ve had two) nor used a powered chair before (I’ve been using one for seven years) on the basis that Guide Dogs will do all the training including using the powered chair. I cried when I heard that. They were angry, hot tears of self pity. It’s not often I want to go back to living in England. It feels unjust, but this feeling alone won’t get me the powered chair I need or my independence back. That will take a lot of ingenuity, patience and some seriously divergent thinking. Suggestions on a postcard please…
Life goes on.