Defining Oneself

I have been asked if my disability, this retched condition my family and I live with every day, defines me? I needed a few moments to think, usually people avoid asking me about my condition as if it repulsed them and the only answer was to pretend the elephant in the room would just evaporate or could be completely ignored. After a couple of moments I answered:

No, my disability does not define me, the occurrences and events I experience as a direct result of my disability define my mood at times, actually it’s more like the actions and reactions of others relating to my disability define my mood, my feelings, even fuel my determination.

Nevertheless, the occurrences and actions of others do offend and do provoke, as with all wheelchair users I have some classic examples of negative actions and reactions, so please forgive me whilst I self-indulge for a few sentences:

1. Whilst shopping you quickly realise your head is at basket height, so frequent hits are the norm. Not really character building but definitely teaches you very quickly to be able to bob and weave in a wheelchair.
2. Then there was the one time I was looking at goods on a shelving unit, and was obviously taking too long for one fellow customer, as they wheeled me out of the way of the item I must have been blocking. They didn’t make eye contact, say a word, make any sound, and disappeared around the corner of the yogurt isle as quickly as they had appeared and violated my space.
3. There was also the guy that was looking at goods and then decided to take a few steps backwards to gain a more panoramic vista of the cheeses, inadvertently shoving his bottom onto my head, losing a degree of balance as one would and eventually coming to rest on my lap profusely extolling his apologies but again not making eye contact. (That’s a common theme by the way; people not making eye contact with you when they make a gaff or mistake – such as placing your bottom on one’s head.)

I try to stay away from shops now, the last thing I need is a murder charge as well as a degenerative condition of the spinal cord. But these things, these moments that pass as quickly as they arrived, are trivia in comparison to the events that I like to group under the phrase of ‘Totally Dumbfounded’. The main example, the exemplar of this selective group of choice flabbergasting moments that is branded into my memory in the left hippocampus, is that of a business trip I undertook to see a neighbouring county’s Assistant Director of Disability Services (or lack of services as I was quickly to discover).

On arrival as prescribed by an extremely annoying and excessively persistent satellite navigation machine (if I had to hear “turn left, turn left, turn left” I swore I would bounce it off the tarmac of the A69 when we reached the guaranteed destruction of any electrical device speed of 60 miles per hour), only to look up at a fine Georgian town house, with a bright shiny placard on a grand black wooden door that wouldn’t have been out of place within the walls of a castle. Problem was this very unwelcoming site of black painted wood and iron hinges was protected by several very high granite blocked steps, forming the perfect façade of Georgian splendour. When my Assistant went in to ask how a wheelchair user could possibly gain access via the stepped fortress entrance, she was apparently told, “Oh we normally tell them to come round the back”.

Assuming the Disability Services felt the need to only see people with disabilities in some secretive and discreet manner, perhaps fearing metal and rubber attachments to people’s arses would not fit in with Georgian splendour, or perhaps feeling people with disabilities just made the place look untidy, we dutifully drove around to where we had been directed.

There was no disabled parking, no part of the road was free of double yellow lines, and the rear was covered in original cobbled stones, a nightmare for any user of wheelchairs, it might as well have been land-mined. To my astonishment, a man comes running to the car to announce that the rear was not accessible to wheelchairs and I should have let them know I was a wheelchair user, as they would have arranged to see me in one of the local coffee shops. I must have appeared somewhat goldfish like as my mouth was moving but only murmurings were emerging from me. As I read the badge proudly displayed on his chest (have no idea what he had to be proud of) my brain kicked into gear. “So, you as the Assistant Director of Disability Services are telling me the offices for this ‘service’ are not accessible to people with mobility problems? And whilst we are on this subject why on earth should I tell you I was in a wheelchair before I arrived?” Rhetorically mentioning, “How out of date are you guys?” At which he said that he would need to rearrange the appointment and scuttled off back into the fortress before I could even answer or berate further – very frustrating in deed.

I must admit I harangued my Assistant for the entire trip back to Newcastle on the total ineptitude and the negative irony of what I had experienced. And this is the point I am making, I am not defined by my disability but rather shaped, moulded by the experience it forces me to have. I am not my disability, like all people I am shaped by life’s experiences and the reality is there is nothing in my mind that is even vaguely positive about having a disability, with one and only one exception.

The exception to the rule is all the people I have met that have a disability, never could one meet such courageous, modest, humbling people, that make you feel even the slightest moan about what one experiences is self-indulgent to the extreme. They have shaped me more than any other group of people, and shaped my determination in life more than any philosopher could ever do. I am grateful to each and every one of them that have graced my life with their humbling contact both past and present, and I hope future.