Thursday, 20 June 2013

So Say We All

The aforementioned kitten post is delayed once more, friends!

I’m sure plenty of readers will have already seen this image of the note left on a young lady’s windscreen by a passer-by after she parked (rightly) in a handicapped space.

(The note left on Emelie Crecco's windscreen which she bravely shared.)

I’d dearly love to say it’s the first instance of such ignorance I’ve seen, but that would be far from the truth.
The situation doesn’t directly apply to me – I’m not ill enough to be considered disabled – but I know people who are and they sprang immediately to mind upon seeing this.
Now, had the scenario been a traffic warden stopping the person and asking to see their blue badge (or whatever equivalent applies) I can understand – they’re doing their job. For a random passer-by to make such a judgement and then have the gall to act upon it is nothing short of rude.
To illustrate the point of invisible illness and disability somewhat further (although it never ceases to astound me that the concept of “invisible” needs explaining), the following is a list from of SOME of the disabilities in existence considered to be invisible – they add their own caveat that this is far from an exhaustive list:
·         Allergies
·         Arachnoiditis
·         Asthma
·         Autism
·         Bipolar Disorder
·         Brain injuries
·         Charcot-Marie-Tooth Disease
·         Chronic Fatigue Syndrome/M.E.
·         Circadian Rhythm Sleep Disorders
·         Coeliac Disease
·         Crohn’s Disease
·         Epilepsy
·         Fibromyalgia
·         Food allergies and intolerances
·         Hyperhidrosis
·         Hypoglycemia
·         Inflammatory Bowel Disease
·         Interstitial Cystitis (aka Painful Bladder Syndrome)
·         Lupus (all forms)
·         Lyme Disease
·         Mental Health Disorders
·         Metabolic Syndrome
·         Migraines
·         Multiple Sclerosis
·         Multiple Chemical Sensitivity
·         Narcolepsy
·         Primary Immunodeficiency
·         Reflex Sympathetic Dystrophy
·         Repetitive Stress Injuries
·         Rheumatoid Arthritis
·         Scleroderma
·         Sjörgen’s Syndrome
·         Temperomandibular Joint Disorder
·         Transverse Myelitis
·         Ulcerative Colitis 
There are 35 different conditions in that list. 35 different reasons you cannot see for the use of that disabled parking badge. 35 different reasons why the person with the badge is not lying.

35 different reasons to think before you speak or act.

I think the point that annoys me most with snap judgements like this is that in a sense it punishes the ill person for doing well, for having a healthy mental attitude to their difficulties and doing their best to participate in a life as normal as possible.

You look relatively OK and you’re going about average every day business? Ah well, there must be nothing wrong with you then.

It becomes apparent sometimes that as a sufferer of long term ill health you are expected to be a spectator of life and not a participant – and no, you can’t step outside of that extremely narrow box, foolish Youngling!

If we ignore general ignorance and all the other negatives which tend to lead to those sorts of assumptions, I think a large part of the problem is that the psychological side of long term well being is disregarded by many, when to my mind it’s equally as important as the physical aspects. You can’t fight the physical cavalry if your mental infantrymen are all missing in action.

Why should you be expected to live life on the sidelines just to fit the narrow imaginings of other people?

I’ll use an example from my own experience. Whilst undiagnosed last year I went to the Bloodstock Open Air Festival – I’ve been going since 2008 and it’s become something of an annual tradition. I enjoy the music, the friendly atmosphere and the chance to see friends I may only have that once-a-year opportunity to catch up with.
(Sorry Doc, Avantasia are more than a good enough reason to be silly!)

Most people were supportive and thought my attending was a good thing – you shouldn’t give up without trying was the general consensus. However a couple of people did start with the “If you’re supposedly so ill, what are you doing here?” comments.

Now, there’s plenty in the cold light of logic which is impractical in attending a three day outdoor festival. However, impracticalities aside I chose to put my mental well being first for those three days and do something I love in the company of people I love.
It had nothing to do with how physically well or not I was– it was a choice based on the fact I’d already had to give up plenty, and that was one thing too many. I’ve said before that I firmly believe that occasionally you have to make logically flawed decisions for the sake of something which is important. You allowing yourself a break and setting boundaries in terms of allowing yourself to participate in life is not only healthy in the long term – I believe it is entirely necessary.

This was something of a lively argument I used to have with my regular GP before I moved up to York. He’d lay out all the practical issues with whatever I wanted to do, and I’d come right back with “With all due respect, I need to do it.” He eventually came to realise that I’m far from a fool and would take all the precautions possible including any suggestions he had to make. I’d make sure I rested up before and after said knotty desire of mine, and I’d do everything in my power to minimise the impact.
During my last appointment with him he wished me luck and said I’d actually had an effect on the way he viewed the overall complex picture in terms of when mental well being contradicts physical limitations. He agreed that sometimes if done sensibly it could indeed be a positive thing.

The Retired Bridgeburner 1, Convention 0?
What I choose to do for my own mental and physical well being is my business and nobody else’s. I respect the informed opinions of the medical experts I deal with, but that doesn’t mean I won’t challenge them if I feel the need to. Passers-by can make all the assumptions they like – nobody knows my body and my health limitations as well as I do, and last time I checked I was not obliged to run my own informed decisions past anyone else, however entitled they may feel to their opinion being heard.

Something possibly worth considering if you are an uninformed by-passer of any ilk – you are seeing only the final product in looking at the ill or disabled person being wherever they are, whether it be a heavy metal festival or sitting parked in a disabled parking bay. You have no idea of the process which led to that – the days, weeks or months of planning and preparation which may have been entirely instrumental in that trip being possible. How do you know if that isn’t the first time the person has gone farther than the end of their street in six months?
How do you know they haven’t gone farther than the end of their street in order to allow themselves to do what they’re doing now?

Think before you speak, and if necessary, don’t speak at all. Your assumptions could do more harm than you know, and they stick in the memory for far longer than you realise.

Wishing you all many spoons xx


  1. As much as the comments you got from Bloodstockers doesn't surprise me at all, they are also highly hypocritical. I'm sure you have seen the physically disabled individual who attends every year in their full body wheelchair, I seem to remember in 2009 the chair was dressed as a long boat for Amon Amarth.
    This person gets praise for having a disability and still enjoying themselves, for getting there and doing what they love. But it's different when it's an issue that someone can't see, that they have to take your word for.

    I'm not in any way putting down or lessening this person's disability, and it is great that they get to go to the festival, but every person with an illness battles their own difficulties and every event puts a different level of strain on the individual.

    I highly doubt these people would say the same to someone with mental illness either, they wouldn't say "if you're so depressed you shouldn't be here." But the illness takes the same tole on those than it does on others with other illnesses. I've been to festivals with my mum when her depression was at it's worst. Sometimes you just have to bite the bullet, try to handle the effects of the illness and have a good time. If anything, I know in the case with my mum it did her the world of good to just get away from being ill. Personally I think anyone who suffers daily and can still lead as normal a life as possible needs applauding, not questioning.

    1. I'm really pleased for your Mum, I firmly believe it's the way to go! And yes I've seen them, the longboat wheelchair was incredible! :-) x

  2. Great post!

    I've shared it on Facebook with this comment: "About invisible illnesses. Not all disabilities involve those you can see with the eye....whereas bigotry is apparent everywhere." Tee hee.

  3. I came from the fibromyalgia talk site. I read this and smiled. I used one for awhile and I would limp, just so folks wouldn't deem me wrong. My handicapped sign was always quite visible on the dashboard when I parked. But I still felt like I would be judged. With my osteo arthritis knees and hips, a limp was easy. Usually after shopping for any length of time, one appears on its own.
    I am going to try to follow your blog with your Thirty Days topic. So much of what I've read so far, I agree with.
    I am 59 and have had fibromyalgia for 24 years and osteo arthritis (at least diagnosed) for 9. I was blessed (or cursed depending on how one looks at it), to have a mother who fibromyalgia and taught me the ropes of living a good life despite it. She had it when it was called something else. I wish she had written these things down, because I can't remember that word.
    Enough for now.
    Terrific blog!

    1. Hi Beth, thanks very much for stopping by and I'm glad you like what you've seen! Your mother sounds wonderful, it's always nice to have people around to explain and to help. I know I've found comfort in other ill folks words and guidance :-)

      I hope you continue to enjoy the blog :-) x

  4. I meant "with fibromyalgia."