Chris Markiewicz's Blog
Every Monday – thoughts, observations and ideas that hold up a mirror to who & how we are

Adventures with my skinny white friend


Firstly, if you are expecting to be appalled by the suggestion that this article is in any way racist or weightist, then I’m afraid you are going to be disappointed.

So, who is my skinny white friend? In fact, we’re talking about an inanimate object here, yet one that is my companion, my guide, even my saviour at times. The official name for it is “symbol cane”. My white symbol cane is what – given my visual impairment – helps me navigate as I go about my work and social life. It has accompanied me to locations as diverse as Paddington, Portsmouth,  Preston, Prague, Paris, Poland and even Port Harcourt in Nigeria.

I have a condition called retinitis pigmentosa (RP)* which is an inherited, degenerative disease of the retina. Main symptoms are tunnel vision and night blindness. I was diagnosed thirty years ago at the age of 25. I am incredibly fortunate in that I still have  a fair amount of useful vision whereas many “sufferers” become fully blind at any age from childhood onwards.

 I only acquired  my skinny white friend about five years ago,  after one too many mishaps, involving bumping into people when out and about.  I also dread to think how many people over the years thought I was rude because I didn’t see them and I appeared to ignore them.  I made the mistake of delaying the use of a cane and found myself being unfairly judged by others as a result of a “bump”- sometimes to the point of being verbally abused – merely because I couldn’t see well. Yet, how were they to know?

Many people make the assumption that white canes are just for the blind. The symbol cane however is designed for people like me who have some useful vision, but not enough to make their way successfully through busy or unfamiliar environments. It is shorter than the cane blind people use and is carried or waved in front, rather than used for tapping or rolling on the ground.

It is fascinating to observe how some people react to the fact that I have a cane: They may cut in in front of me and grab a seat on the train because they assume I can’t see them. “Chuggers” on the High Street touting for direct debits ignore me (don’t know whether to feel relieved or offended by that one). Others look bemused when they see this elegant, cheery looking man in a business suit carrying a cane.

Then there are the bizarre behaviours, such as the woman who offered to help me in Paddington Station:

 “Where are you heading for?” – she boldly enquired

“Bakerloo Line” I cheerfully replied

At which, without further word, she leaned down, grabbed the end of my stick and proceeded to pull me through the station . Now, I’d often dreamed of being pulled by a woman, but this was not what I meant! Can you imagine how ridiculous it looked? It took three assertive protestations on my part before she finally let go and scuttled off in an apparent huff.

On another occasion I was sitting in the priority seat on a Northern Line train with my cane folded on my lap. It was busy and the carriage was crowded. Suddenly I was prodded very hard in the arm by someone to my left and a shrill woman’s voice loudly declared so all could hear: 

“Can’t you see that pregnant woman, why haven’t you given up your seat?”

“I’m terribly sorry, no I didn’t see her….”

 ….at which I calmly unfurled my cane and offered up my seat to the pregnant woman standing to my right – outside of my limited field of vision. I didn’t feel too proud of putting the offensive woman in her place – it’s not usually my style, but hopefully, she realised that she could make her point less aggressively next time.

A new game I’ve played a couple of times is to start crossing on the green man at pedestrian lights when a car is blocking my path – ie: hasn’t left a gap in the traffic for people to cross. Now, I admit this one is a bit snidey. I approach the side of the car and start tapping my cane on the door. I make sure I look baffled as I tap along the car trying to get past. Again, I’m hoping the drivers concerned may learn that it’s not OK to push themselves into the space thus blocking pedestrians.

Oo-er, I’m starting to sound like a grumpy old man.

Having said all this, many people are wonderful when it comes to offering assistance and I’m often touched by the tiniest of gestures that can make my life so much easier – such as the man at Didcot Parkway station recently who guided me in the pitch black to the taxi. Also, the taxi driver himself who then offered to walk me to the reception desk at my hotel.  Mind you, it does make me laugh when hotel receptionists ask me for my car registration number! You’d be amazed at how often that happens.

By the way, I’d like to put in a good word for Transport for London staff – overall, they are brilliant.

Having a visual impairment has its lighter moments, it also has it’s frustrations – as a former petrolhead, I sorely miss the freedom of jumping in the car , throwing off my top (roof of the MG, not the shirt!) and shooting over to a mate’s place or whizzing along country lanes with a Glen Campbell groove on at full blast.

If you see someone with a skinny white friend at a social do, conference or networking event, please don’t be afraid to engage. This is one that I find really tough and difficult to adapt to since the sight deteriorated – it almost feels as if I’ve become “invisible”. The feeling of isolation can be tortuous, albeit partly self imposed if I don’t make the effort either. Sometimes though,  the confidence just  isn’t there.

So, more adventures to come? You bet. I am incredibly fortunate in that my work as a facilitator is pretty much unaffected by my disability – unlike my friend, a driving instructor who has lost most of his sight through diabetes. In fact, probably the greatest affirmation for me came from a woman called Erica who was attending a course I was running in Brussels:

“Chris, you see everything”

 We see in other ways, as well as with our eyes.

 Meanwhile, modern technology means I can build up my phone/skype coaching and mentoring work and may have to step out and brave the “mean streets” less and less.

Mind you, my skinny white friend, along with any number of clients may have a thing or two to say about that! Apart from which I daresay life wouldn’t  be quite so rich.

“See” you next week.

 Note: As well as training and coaching/mentoring work I give talks. If you, or someone you know is  interested in booking a talk on the theme of “Adventures with my skinny white friend” or similar as a way of raising awareness, inspiring and educating in a highly entertaining yet powerful way  – do get in touch.

 * For more information about RP visit: www.brps.org.uk

 

www.chrismarkiewicz.com                     chris@chrismarkiewicz.com

TRAINING – COACHING – FACILITATION – SPEAKING ENGAGEMENTS

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9 Responses to “Adventures with my skinny white friend”

  1. A courageous post and interesting too – for me and probably even more so for anyone whose sight is deteriorating. I too am beginning to develop an interest in speaking at events for charity, for fun, possibly even for money. Have you found any useful ways to publicise your availability as a speaker?

  2. Very inspirational Chris – I love the crossing one, how embarrassed must the driver feel !

    Its sad, but a fact of life that people choose not to engage with someone who might not fit into what they might call “normal fit”. Its mainly because they are uneasy about how they should deal with the other person’s obvious impairment. Quite natural really I suppose, perhaps you should wear a tee shirt saying “my only problem is my peripheral vision, whats yours ?”. Perhaps not !!

    Here’s to your skinny white friend

  3. Well done Chris – how does it feel to come out?

    M.

  4. Great Chris. Having trained with you, I can vouch for the fact that you see everything…and more!
    It is awesome for those of us who have 100% vision – well almost! – what you can do without much. You are an inspiration!

  5. Hi Chris I also have RP and just been registered blind(which is like being told i have the plague)!!! You have just described my life in your blog,but must admit youre a much braver person than me.Please keep up these blogs as i found it very amusing…….

  6. Thank you for the comments so far – really encouraging.
    Freshword: I think my eyes are worse than I thought, because on first reading I thought your comment said “outrageous post” rather than “courageous”! Most speaking engagements have so far been as a result of being asked (but not yet on the topic of my vision). Like yourself, I’m exploring ways to promote this – I’m convinced there’s a place for talks on this topic.

    Alan – very insightful re: how people react if you’re not the “normal fit”. Because my sight has slowly degenerated, I notice how people are more gauche with me nowadays in social situations than, say 10 years ago when I was more “normal”. LOVE the idea of the t-shirt! May actually get one made up.

    Michael – I finally did it. Thank you for your persistent encouragemnt over the months to write about this.

    John – your feedback is precious. One of my biggest fears is that this would adversely affect my professional life and your comment should suggest the opposite. So reassuring.

    Thanks again all.

  7. Hi Gail

    So glad the piece hit the spot for you. I too was registered severely visually impaired last year – I must admit I enjoy some of the perks, but would rather it were otherwise. To be honest, I don’t usually write about my RP on this blog, but may start one specifically on that opic as well. Will let you know if that happens.

    Best wishes
    Chris

  8. Chris, funny, witty and inspirational!
    Thank you for sharing.
    I fully empathise with your experiences of ‘caring people’ i.e. almost-thrust-up-on care and totally ‘uncaring people’ e.g. motorists at crossings and my personal bugbear is those who park in Disability spaces. Unfortunately most people fall into the category “don’t know how to react to disability”.
    Heck! all of you who don’t know how to react – we are all human beings with the same basic needs.
    I’ll be passing on your link to many.
    Best wishes
    Merle

  9. Hi Chris

    When I read your stuff I just feel humbled – not in any new agey nicey way but just because there is so much heart in everything you write and do – you seem so alive to the world and its ways and live in such compassionate interaction with others. Maybe another part of your ‘vision’ is turned up much more brightly than those of us who are supposed to have 20/20 sight?

    Too long since we have seen you x
    Tina


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