Thursday, November 25, 2010

You Can't Tell By Looking

As I'm still so low on spoons I'm reposting some older relevant blogs. This and the previous are looking at how we view disability and some of the common misconceptions about who is disabled and what that might mean. 

First posted 12th October 2009

This weekend brought the much anticipated wedding of Oldest Friend. It was a lovely, joyful day; the bride beautiful, groom handsome and children charmingly underwhelmed by it all. It was also the first time I'd seen some of the other guests for more than 10 years.

As we all know conversation on these occasions is pretty much limited to the school of "How are you?" I've now got a fairly standard 'yes I'm well thanks, had some health problems, interfered with career but all is good' then quickly deflect the questions back to the other person kind of answer. Upon reflection I decided that the only advantage of attending a wedding solo is not having to endure additional interminable questions about my lack of partner!

Almost without exception every person I mentioned having experienced health problems to replied with the statement "You can't tell by looking" or some variation of. Five words that seem so innocuous yet always leave me slightly flummoxed, because how on earth are you supposed to respond to that when you're not even sure what its supposed to mean?!

I've pondered this question on many an occasion but I'm still not sure of the answer. The popularity of But you don't look sick and the spoon theory indicate that the "you can't tell by looking" problem is a common one both for those with invisible disabilities and those without.

As far as I can make out, "You can't tell by looking" means any or all of the following things;

  • Shut up! Seriously, shut the fuck up! You look fine, great even. I don't believe you have anything wrong with you at all. Shut up!
  • Don't worry, if you're not drooling, pissing, shitting or any manner of 'anti social' activities it's ok to be a crip. After all, you look hot you know!
  • I'm jealous of the way you look and secretly delighted to hear you've been seriously ill.
  • Disabled people look....well, disabled. You don't. Therefore you are not disabled and my vision of the world can remain happily ignorant.
  • OMFG! If people who look well can be disabled or sick it could happen to me, or someone I love...cos they look just fine too. OMFG my brain is going to explode and drip steadily from my ears.
  • I'm really saddened to hear you've experienced health problems and the only way I can think of to express my empathy is to tell you how wonderful you look.

The reason this is so important is that most disabilities are invisible, which inevitably leads to an overall impression that there aren't many disabled people around so all those on benefits must be fraudsters. This kind of attitude can be so pervasive that I've experienced it on many an occasion from members of the medical profession. So much so that I suspect it's also linked to some of our most basic instincts and senses of how we humans make sense of the world.

It's particularly important to me to minimise the visible effects of Ehlers Danlos Syndrome. Not because I'm embarassed or lacking acceptance, but because it's better for both my physical and mental health not to focus upon it. I don't care if people see me limp, fall or use a wheelchair, and, as happened this afternoon I have no real problems with asking a stranger to help me should I need it*. What's important to me is how I deal with the symptoms of my condition. As EDS has no cure and in a sense no treatment psychological attitude is all. Over the years I've found that the more I smile the better I feel and the less I think about it or mention it the easier it is to deal with. I'll howl over major dislocations or occasionally have a whinge but overall I prefer not to bring it up and just get on with things as best I can.

The unfortunate consequence of that kind of attitude is that people in my real world life** generally have no idea just how extensive my disabilities are. Couple that with an invisible disability and I suspect I'll be hearing "You can't tell by looking" for many a year to come!

*Being rather cute had nothing to do with it!
**I know, and you know that blogging is the real world...but non bloggers just don't get that! 


Sue Marsh said...

Me Too!
I LOVED that post, literally I ROFL and all the other patients just looked at me funny.
Your translations of "But you look fine" were devastatingly accurate, still laughing now.
Mind if I link it at the bottom of my post today? I might even do something along the same lines to present a united front - do you mind.
Finally you love searingly hot and I'm proud to see you looking so foxy. Well done my dear, I know what it costs.

BenefitScroungingScum said...

How're you doing today? Hope the nurses have been nicer!
Glad to hear how much you like this, of course, link away...a united front is what's needed. BG Xx

Anonymous said...

I don't have ED - but am just as broken. You know what I find helps? carrying a walking stick - it keeps me upright AND makes people aware.
I'm only young, 40 - but will have 'my problems' for the rest of my life and they'll only get worse! Not use crying over what might have been - just do it - get on with it - only think about tomorrow when you get there ;)

Jodi said...

Oh yes. I've always encountered it most as "You look well". A lot of the time I know that people are trying to say something nice, and although it's rather inept, glosses over how much I'm really very badly *not* well, and often seems to imply that looking ill must be my greatest worry and they're relieving me of a major burden, they do mean to be kind. But the thing is, I have also heard it from people where I know it is absolutely your first translation that applies. And so every time I hear it, even from the well-meaning people, it's the suspicion and disbelief that is immediately brought to mind.

Mr. Nighttime said...

While I'm not disabled, I still get somewhat similar responses from people upon finding out I had a liver transplant. They range from the innocuous: "Wow, I never would have known you had one!" To: "You don't look sick?" (of course not you dork, that's the whole freakin' idea!) to: "Are you on disability? (Uhm, no, and why should I be?) And my favorite of all time: "Who did you have to kill to get that liver?" (No, I'm not joking. I was actually asked that once by a very ignorant individual who believed that this is how it was done.)

The best one can do is to shrug most of it off, try to educate where you can, and laugh at all the rest of the absurdity in people.

Fire Byrd said...

I do get tempted sometimes to whip up my top and flash my scar at people!

Jan said...

Great post. I usually take the statement at face value and reply "No, you can't tell by looking. With so many invisible illnesses about I sometimes wonder why people bother looking at all". Unless they mean the last of your translations, which is the only circumstance under which we stay friends.