Jaw droppingly different

Positioned front and centre, I lead the way. Numerous eyes on me, I take a deep breath, hold my head high and focus ahead. Most people notice me, some take a quick look while others take the time to stop and examine me from head to toe. I can turn heads, make jaws drop and cause children to run away in fear. I’ve had tourists gather beside me and a family follow me around, all for a better gawk. A trip out and about is never boring with me and my wheelchair!

A very dear friend of mine asked me to write about being in a wheelchair. Her beautiful young son uses one to get around and she wanted to know what it felt like. My handsome buddy and I experience life from a different position and I was delighted to share my perspective with his mum. My initial enthusiasm to write the blog quickly dissipated though: I began to realise that my vanity and insecurities were major factors in how I felt being in a wheelchair. The biggest issue for me is people constantly staring. I just can’t seem to get over it, it really, really irks me!

Some of you might think I am being ridiculous: “Who cares what others think?” “Sure, it’s natural for people to stare.” “Just ignore them.” – I’ve heard it all, believe me…. A while back, when my son was six, I remember him asking me; “Why are all the people looking at us?” Heartbreaking that he noticed the unwelcome attention. But if even a young child notices it, then it’s not just me being paranoid!

Slightly ashamed that I was letting my vanity overshadow my thoughts, I contacted my friend to explain my writing block. She immediately responded with a long list of her experiences of the starers too. No surprise that our stories were very much alike. And we both have similar defence strategies; stare back with ferocious intent. My friend has the added advantage of being able to vocalise her retorts. My failed muscles on my face and in my mouth preclude me from reacting like I would really like to.

Now that I’ve got that off my chest(!) here are some tips on how to handle an encounter with another ‘human’ in a wheelchair. These are all from personal experience:

  • “Greetings, Fellow Human!”
    If you meet a wheelchair user it’s ok to look (we are all curious), just DON’T stare. Smile and move along; no rubber-necking.
  • “Beep Beep!”
    Unless you have driven or pushed a wheelchair it’s hard to appreciate how undexterous it is. It’s not nimble like a baby’s pram but cumbersome like a shopping trolley. It’s fine when you are going straight but when you have to stop or change direction it’s a different story. Common courtesy seems to evaporate when a narrow passage, a wheelchair and a pedestrian come together. People are so focused on getting by the chair they scurry past without any regard, forcing me to stop in my tracks. If I had a Euro for every insincere “Sorry ” I’ve  received while some one busted in front of me, I’d have enough money for a golden chariot by now ! Eventually some decent person will stand back to let me through. I want to kiss them for their kindness.
  • “You’re a good driver!”
    Thanks for noticing! Most people just stand and stare at me (I do drive with a set of head controls….). I remember negotiating through a tight corridor of tables and chairs in a half empty coffee shop. All eyes were on me as I inched through. A nice man hopped up to move a chair out of my way. He stood back with the chair in his hands and said, “Wow, you are an amazing driver!”.  I was delighted; he instantly made me feel good.
  • “Mummy, why is that lady in the wheelchair?”
    You’re with a young child and they ask why the person is in the wheelchair – and I guarantee this will happen when you’re in a packed lift, with every one waiting for your response with bated breath! You could say something like, “Maybe their legs need some help so they use a wheelchair.” The one I tell all my son’s friends is “My muscles don’t work anymore”. Just keep it simple!
  • “Hello, I’m here too!”
    If you strike up a conversation with the person pushing the wheelchair, DON’T ignore the person in the chair or have a conversation behind them. It’s just plain bad manners.
  • “Why….?”
    This is for the curious ones, who soooo want to know why the person is in the chair. My advice is “Don’t ask”!  This is a very personal question and some people may not want to share. My dear friend is much more generous than me and gave the following advice on this one: Her little chap is handsome and young so attracts attention. (He has beautiful eyes and killer eye lashes). People often ask her, “What’s *wrong* with him?”. She finds it deeply offensive; he is her perfect little boy. She heard this gentler question suggested by another parent and instantly liked it: “What is his difference?”
  • “Jesus loves you!”
    Yes, some random crazy person came up to me and said that – they actually circled around me before their approach. I was deeply offended, on so many levels. Seriously, wtf?
  • “I’m not deaf!”
    Just because I’m in a wheelchair doesn’t mean my ears don’t work. There’s no need to bend down and shout at me while slowly over-enunciating  your words. Assume the best of people’s abilities, not the worst. Just talk normally.
  • “I don’t know how you do it”.
    I do it because I have to! I’m not looking for pity or congratulations for being in a wheelchair. No head-tilting sympathetic looks needed, thanks.

Good manners and common sense, it works wonders and can help us avoid offending others. Four years ago I’d never have given a second thought to what it felt like to be in a wheelchair. I’ve been in a chair a relatively short time so I have enormous respect for those who have been in one all their lives. I have a spare wheelchair if you would like to see what it feels like   😉

Sharon x

Funny tee shirt available on Zazzle.com

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Author: Sharon Friel

In 2012 at the age of 38, I was diagnosed with Motor Neurone Disease/ALS. A death sentence with an expected term of 1,000 days; I've since bypassed my expiry date. Although paralyzed from the shoulders down and voiceless, I am still here, still living my life. Wife, mother, daughter and sister; family is what makes this all bearable. Before MND hijacked my life, I was CEO/Manager of a Credit Union and loved exploring the outdoors - cycling, walking and kayaking.

11 thoughts on “Jaw droppingly different”

  1. You are such a talented writer, Sharon. I really enjoy reading your posts and perspective on life. Keep writing. Jules (Winchester) Xx

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  2. So good to hear things from your perspective Sharon. A reminder of basic courtesy. Perhaps your words will save someone those awkward stares. You are a gem and write with such honesty. A sparkle of insight in everyone’s day. All my love Fiona.

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  3. Shaz – I am so proud to have you as my aunt, because you are so strong and amazing and hilarious and I love you so much. You have always been such a huge part of my life and you always will be. Your posts are inspiring and thought provoking, and every single person should have to read them so maybe they could show everyone else a little more empathy, and think about how their actions can affect others. You could truly make the world a better place. Xxxx

    Liked by 1 person

  4. Sharon, you must must write a book- your literary talent is second to none and your ability to describe such personal experiences is mind blowing. Thank you for sharing them. Dolores xx

    Liked by 1 person

  5. Sharon. thank you once again for so generously sharing such really valuable insights and experience in such an articulate way. I’m passing on your blog on to my brother who has a 16 year old grandson, a life long wheelchair user who unfortunately also has learning disabilities so would not be able to communicate about his experience. I’ve no doubt it’ll be hugely useful to his family. Thanks and take care. xx Phyllis Murphy

    Liked by 1 person

  6. Sharon, this is a brilliant, thought-provoking and insightful article. I am shocked sometimes to think that despite all the Disability awareness we read so much about, there is such ignorance still out there.
    The jury is out on the well-intentioned but condescending approach by some though…at least they are thinking about it. hmmm….
    Your strength, talent and wicked sense of humour is awe-inspiring.
    You are a huge part of my life too, as Leontien has already stated in her response, and I look forward to seeing you every time I am home..
    Keep up this great writing, that teaches us all so much please.
    Hope to see you in a couple of weeks.

    Liked by 1 person

  7. Sharon, a beautiful article. Yes people do stare and it’s just rude. None of us know what lies ahead. You are an amazing lady in every way. Take care of yourself Marie x

    Liked by 1 person

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