Following on from last week's topic of 'Keeping up Appearances' my jovial disposition and positive attitude, along with a new 'make-over' can cause confusion to others; almost painting a false picture for those who don't know I suffer from Gaucher disease and Parkinson's. I strongly advocate staying cheerful, yet on occasion have found this personality trait of mine puts me at a disadvantage. "Why?" you may well ask!
Sitting at a café, well dressed, with a good hair cut and make-up on, no one would suspect for one moment, that I am disabled and struggle to get through each day. As I stand up, only then, leaning on my crutches, it becomes clearly apparent that I have difficulty in walking. As I shuffle my way awkwardly past other tables, I can feel all eyes upon me. Should we venture to a shopping mall; unable to manage the amount of walking involved, we take my wheelchair with us. This is where I find appearances are far too quickly judged, all because I am sitting in a wheelchair. For all you know, I might have merely broken my leg or had a hip replacement, but all too often, people see the wheelchair and not the person.
I've found that generally people feel ill at ease, not knowing the difference between disability and chronic illness, especially when the person is in a wheelchair. There is a huge difference, but unfortunately ignorance and preconceived ideas, unfairly pigeon-hole all into one category. For example; someone who has been in a serious accident, might no longer have the use of his legs, but despite being confined to a wheelchair, is mentally as sharp as a whip. However, a person with advanced Parkinson's, hunched over in a wheelchair, possibly shaking or resting tremors visible, a blank expression (known as 'masking') may give the impression that the person is inarticulate, or 'is out to lunch', which might not be the case at all. An individual who has dementia and is wheelchair bound, as my mother was until she passed away; always had a cheerful attitude and was never without a smile, yet sadly didn't know what day of the week it was. Thinking back to the Paralympics held in London this summer, it was inspiring and heart-warming to see athletes who were a shining example of how the human spirit can overcome severe disability and pursue dreams that some would not dare to attempt. I have given you a few simple examples, but I hope you can now understand there are many varied reasons, so when you next see someone in a wheelchair, please don't judge and make hasty assumptions.
Sitting in my wheelchair, my husband has been asked "how is she?", whilst I'm right next to him. This is highly insulting and hurtful to be talked about in the third party. "HELLO!" can they not see I'm right here, and have the decency to ask me directly how I'm feeling? Then there are people who are brave enough to address me in a wheelchair, but talk in an extremely loud voice, speaking slowly and annunciating every word clearly, as if I'm hard of hearing or stupid? which I can assure you, I am not! But the strangest phenomena of all, is when I miraculously become completely invisible! Like Harry Potter wearing his invisibility cloak, some people don't see me at all and look straight through me as if I don't exist! Who needs an invisibility cloak when you've got a wheelchair?!!!
The misconception that Parkinson's only effects the elderly, also confuses strangers I meet, and people get angry with me if I take too long to retrieve coins from my purse, or open my bag. Taking one look at me, and seeing a relatively young woman (I'm almost 50 - but according to Oprah "50 is the new 40"!) they have little or no patience. If I apologise for taking so long and explain I have Parkinson's, suddenly it goes very quiet, and these talkative self opinionated complainers are quickly rendered speechless!
I don't expect or want special treatment, but I do ask to be respected and treated with dignity. I hope that people will become more tolerant, have patience, show empathy and consideration for those who are disabled or chronically ill, whether in a wheelchair or not. I met a lovely lady some time ago who was in a wheelchair and we had the most interesting conversation. I thoroughly enjoyed her humour and the fascinating stories she had to tell. Why was this lady in a wheelchair? She was simply very frail and old - 102 years old to be exact! http://www.elainebenton.net/Suggest a correction