Monday, October 12, 2009

"You can't tell by looking"

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!


LceeL said...

Personally, I think you are GORGEOUS and you can scrounge benefits from me anytime.

That says more about me than you. I'm a dirty old man.

cogidubnus said...

I agree..."rather cute" you said..."cute" is just not the word for it and "rather" doesn't modify it enough...I guess that makes me a dirty old man too!

Veronica said...

I think you've hit the nail on the head here. Disabled people are meant to look disabled. So if we don't, then we're not. Heh.

Scribbler said...

I'm sure you'll find most people are in the last category. Why would anyone wish misfortune on anyone else?

The other option, of course, is 'Well, I've no idea how to respond to that so I'll blurt out a statement of the bleeding obvious based on unconscious and unmalicious prejudices I may carry.'

Casdok said...

Im sure you will hear it for many years to come.
Love your top :)

The Goldfish said...

I honestly think it is meant as a compliment but it is also one of the stock responses. Like when a woman is pregnant and everyone (even I) ask

(a) When is it due?
(b) Do you know if it's pink or blue?
(c) Have you thought of any names?

because babies are supposed to be very very interesting but there's absolutely nothing else to say. There are other responses to the news of ill health, but these will be

(a) intrusive questions about your condition and treatment,
(b) advice to eat more fruit (or something similarly banal)
(c) a lengthy description of their health crisis, in which they mistakenly thought they had a tumour and very almost died of tedium.

Which´╝ęthink are all much worse. My only advice is to frame the explanation so that you mention your health early on so and end with a question, such as

"I've been sick which has caused a hiccup in my career, but I'm currently compiling a coffee table photography book documenting the inadequacies of disabled toilets in the British Isles. Do you know of any bogs that you think I might like to include?"

Or something like that. I'm not dirty, old or manly but I do notice today's CAPTCHA reads phwoahh.

frogpondsrock said...

Just popped over for a hello.

BenefitScroungingScum said...

Lou: Lucky for you I've got a soft spot for dirty old men then eh?! ;)

Cogi: I hate to break it to you...but I was referring to my 'rather cute' random stranger not me! lol

Veronica: Zactly! To a level it's almost hard wired in us...I'm really sure it's linked to some of our most primal instincts

BenefitScroungingScum said...

Scribbler: The categories are supposed to be very tongue in cheek, and yes I'm sure most people fall into the last. Having said that, there is a very real confusion about how disabled people are 'supposed' to look which is the wider issue. Sadly, though they are in the minority there are people who take pleasure in another's misfortune.

Casdok: I thought it might be familiar to you;) Thanks, I love that top...bought it about 8 years ago in topshop!

BenefitScroungingScum said...

Goldfish: Teehee! I definitely agree those options are all worse. Like you I do generally assume it's meant as a compliment, but I find the correlation we all make between appearance and health fascinating, it's one of the ways we subconsciously chose a partner and I'm sure it affects a great many more decisions we make.

Kim: Hello my darling! How are you? Sorry I've not been to 'visit' with you much lately, the pig flu wiped my will to do anything. Hope your teeths are happy and not giving you grief anymore? Xx

Rach said...

Lol you shouldn't be so bloody gorgeous then, I love your smile and that in it self covers up anything else...xx

Emma said...

Thanks for your humor, I too struggle with 'you can't tell by looking' and I think it is deep in layered meaning. On the surface it may be a well meaning compliment but what does that as a compliment say about there attuides to disability - it still cuts me as it feels very dismissive of the havoc and impact my condition has on my choices in life.

You are fab, fist blog I'm bookmarking!


Sweet Disorder Photography and Design said...

Yeah, this one's the hardest response for me, too. Well, except for one person last week who, when I told her my hip comes out of socket (obviously just a scratch in the surface of what's wrong, but she had asked why I was on crutches in passing) said "yeah, I have the same thing." and then skipped off down the hall. I wanted to hobble after her and then smack her.
Love you blog!