Don’t Stare – but don’t ignore her either.

Disability Cool:  From “wow I can’t really tell you are disabled”  to  “incredible amazing electronic, computerized technology disabled”

People literally do stop and stare at Chelsea. If we are out and about in Singapore, I watch as people, young and old almost fall over themselves as they stop and stare, or better said “Gawp” at her. They turn in their seats, stop what they are doing, cross over the road or just move in closer to get a better look, drop open their jaws, take a big breath and then stare.

Little Kids are definitely the best at staring and at falling over when they do it – but they are usually just openly and genuinely curious.  Little boys are mostly fascinated with the wheelchair, and they stare and sometimes touch the wheels but are usually very quiet, and the little girls just stand and look at her. 

The older kids and teenagers, especially girls, usually don’t even see her, or have long ago stopped seeing her, as they are far too busy being absorbed with the most interesting and fascinating creature in the universe themselves.

And by far the worst, that would be the adults and older generation in Singapore. They gawp and stare the most and they ask by far the most inappropriate and offensive questions. (I could at this point digress to the essay about cultural differences and how we need to be tolerant of the behaviour and habits of the older chinese/asian generation that I have heard as an excuse for bad manners and rude behaviour here for the last 16 years but we will leave that for another time)

People usually stare and then ignore Chelsea and talk to me or the person that is with her. The questions are all about Chelsea but never directed to her. So is it any wonder that she feels invisible and rejected. her strategy for dealing with this is to hide, mostly at home (where she is today and has been for most of this week)  preferring to be alone in her room rather than going out to face the staring but seemingly indifferent world. (cartoon is from this weeks  New Yorker Magazine)

Disabled and Cool!

Now I admit, I am biased, and I know my darling girl is totally cool, but if there was going to be a Disability Cool Wall (ref Top Gear)  they would first need to decide the criteria for cool. 

Disability Cool:  From “wow I can’t really tell you are disabled”  to  “incredible amazing electronic, computerized technology disabled”

So at one end of the scale you’ve got athlete Aimee Mullins .  Blonde, beautiful, articulate, smart with her really cool artificial blade legs that are so good that most of the time you can’t even really tell that she has any disability at all.  Aimee is incredible and talented and would/should make any cool wall.

And then at the other you’ve got Stephen Hawking, with his computerised voice and wheelchair, breathing via trach and on a ventilator, married twice,  father of three children, best selling author, brilliant cosmologist, astronomer and physicist who’s been on the Simpsons and in Star Trek and has floated at subzero gravity on the NASA simulator!, Hawking  is 69 and is a quadriplegic disabled with ALS/MND since he was 20. 

I read a profile on him that explained that when he gives a speech it has to be prepared way in advance to ensure that the computerised voice synthesizer can be programmed. At a recent TED conference he was asked a question and it took him more than 7 minutes to enter the data to give a simple unscripted answer. How does he enter data? by leaning his cheek against a touch pad!   Hawking is difinitively cool in my book. Can’t imagine anyone ignoring him, but I bet they also stare.  

My mum used to tell us it was rude to stare, and would admonish us if we did, especially when the object of our looks was in any way challenged. Politeness and good manners were to always out way curiosity. The thing Chelsea’s radar picks up straight away is pity. She hates to be pitied and yet it is almost impossible not to look at her and feel sorrow and then even fleetingly to pity her the reality of her life.

The problem for me is when someone stays at the pity stage and doesn’t get to the  “wow, cool girl stage”. To do that you have to stop just staring at her and make sure you see her for what she is.

Amazing, resilient, smart, inventive, amusing, brave, well-informed, talented, loving, opinionated beautiful, intelligent:

Chelsea – Hawking version 2.0 and definitely cool!


About Sandra F

Juggling work, family and personal life without much success...
This entry was posted in Disability, Family, Identity, News, Technology and tagged , , , , , , , , , , , , , . Bookmark the permalink.

3 Responses to Don’t Stare – but don’t ignore her either.

  1. Pingback: International Wheelchair Day 1st March 2012 | Mom on the Side

  2. Pingback: They Stare! (video) | Mom on the Side

  3. LQuigley says:

    Well stated, “Mom on the Side”. Chelsea is a very pretty young lady. I can say, (as a mom of 4, 2 of whom have severe mood disorders) one of the most painful parts of for me is the inability to “fix” my children’s broken hearts. I think witnessing the exclusion and heartbreak that’s encompassed therein is one of the most difficult of all things to bear. I often wonder if others could experience how dreadful it feels to be excluded, if they might perchance have a different understanding…Understanding does come to some through exposure and maturity (for some) of which I’m thankful for people like Amiee Mullins, Steven Hawking, Christopher Reves, that began breaking down stereotypes and carving the way…I appreciate your blog and candor. Thank you!


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