Tuesday, 17 February 2015

You know you are sick/ disabled but people have CRAP understanding

Yeah was hoping for lots of input but didnt get it.

Heres the crux of this.

You're ill/ disabled/ cronically affected.. And expected to take part in society.

But people dont , even though say they do, quite understand how you feel. Or what you need. because they assume.

Instances are: Me. recovering from a bad injury, having to wobble, walking, sitting down on a wall yet being shouted out "he's pissed"

Another example is Tanni Grey Thompson where she was offered across the road WHEN SHE DIDNT WANT TO CROSS THE ROAD at all. And the person continued with no attribution to the persons feelings or desires to try and push across the road?

How much do people ignore the wishes of sick/ disabled people and assume they know better? . I thought I'd blog that with loads of input. as example to show that people dont think enough?

The blog is bland.

Theres no other examples because i asked a question 14 hrs before writing this and no input was given. My intent was this to be a crowdsourced experiences blog . no one wanted to tell me or others the struggles from their own point of view, Of They know they are sick/disabled and the lack of understanding they experienced in the last week .

Comments are open and this is a widely shared blog.


  1. I happen to not be sick/disabled so I was reticent in making a comment given that it would be from the perspective of being a witness,rather than someone with direct experience,Jules has stated that was fine.

    I will start with a couple of statements:

    "You don't look ill enough to be on dialysis"
    "You can walk can't you I saw you in a car seat"

    Hypoglycaemia effects have been mistaken for drunkeness and /or mental deficiency -"is she always like this?"

    Wheelchair use:

    Assumption of inability to walk means inability to talk/comprehend.
    The moving of W/C out of the way,seemingly unaware that someone is in it and would much prefer to be asked beforehand.

    There are more general ones concerning the supposed lifestyle and misassumptions about what is/isn't provided to account for disability/illness needs,many "of course you get when you don't.

  2. Oh yeah, I love how people tell my husband what a "great bloke" he must be for pushing me in a wheelchair. I know they mean well, but they're assuming I'm a burden, a trial, that his saintly self-sacrifice makes him better than me.

  3. From ignoring my disability, I had one classmate say to me "you don't even need your wheelchair" when a sudden decline in my health meant I could only use my wheelchair.

    To the patrronising: A man came up to me before a concert. I was alone, as I used to often go to concerts on my own, and I'd been asked by the staff of the venue to go to a certain spot out of the queue for safety and that way they could get wheelchair users in easily before everyone else. So this man came up to me and said "Do you want me to find your Daddy for you?". I was twenty with cropped died hair. Even if he'd mistook me for the twelve year old everyone else mistook me fore, that's no way to talk to a twelve year old, surely?

    I said, "Er, I'm twenty and I'm by myself, thank you" and he said "If you're sure..."

    Like, if i'm sure I'm twenty or if I'm sure I'm by myself...? I didn't know how to reply to that, I just gave him a look.

    And then the argumet I once had with a classmate when she said I had no reason not to meet her at the weekends because I could just get the bus. Now even though the bus was at that time too far for me to self-propel to, this was in 2005. If a bus DID have a ramp, bus drivers didn't know how to get the ramp out, the ramp was stuck, the driver didn't have a key or the driver just flat out refused to get the ramp down. But she was adament. I was making excuses. I could get a bus, because busses have ramps.

    I have a few friends, one of them is always assumed to be my carer, and the other one is assumed to also have a disability because how else could we have met but through the Secret Society for People With Special Needs, and what else would drive our friendship but the topic of disability, obviously!?

    Gone are the days when friends were mistaken to be my girlfriends! Those assumptions went out with my ability to walk. Funny, isn't it?

  4. Invisible Illnesses :- Sometimes the most dangerous and life threatening conditions are the ones no-one can see. We've all heard comments about people getting out of and walking away (even worse if they put on a sprint -usually to nearest public loo) from a car in a disabled parking bay ; people appearing to be drunk at 10 am ; neighbours who are known to be claiming benefits who appear to be leading the life of riley going on holiday etc. Can the general public spot inoperable tumours in a person's brain causing seizures/staggering; Abdominal aortic aneurysms like a time bombs waiting to explode; leukemia, various other neurological diseases, autoimmune disorders? - some of these illnesses bring obvious disability but not always and not always in earlier stages but the uneducated general public are always quick to tell you about the guy down the road who hasn't worked for 6/7/8 years and "nothing wrong with him" How many times do we meet an acquaintance who looked 'to us' in reasonable health only to find out 3 weeks hence that they've passed away with some form of inoperable cancer. The list is endless but the answer is clear 'DON'T JUDGE WHAT YOU DON'T KNOW' !!

  5. bendyleopard

    Whenever I wear my wrist braces (to stop them dislocating or spraining) I always get "Oooh fallen over drunk have we, love?"

    Just today I was talking with a fellow wheelchair user, we both said that actually getting up & out of our chairs feels dangerous now. The Gov & the media have whipped up such a mistrustful, suspicious attitude in society that it's scary transferring from wheelchair to car. The fear that someone's going to bound up to you & accuse of being 'fake' because you've managed a few steps...or worse be physically attacked, is very real. We read about disability hate crime daily & know what can happen.

    It's not just a fear of being attacked or shouted at in the street it's also the constant low-level stuff (like the wrist splint incidents) Sarcy comments, people thinking they know my own body better than I do. People who think they can diagnose (& cure!) me with a glance...y'know despite already being diagnosed by actual specialists.

    This country is a very hostile place for sick & disabled people.

  6. @Lola_MCelle

    I would never admit to being on disability benefits as my severe and enduring mental health problems are invisible.
    However the psychotropic meds are taking their toll, weight gain, knee playing up. So scared of DWP all the time.

  7. I find there's a double-edged sword to what I'd call "performing disability" - By which, I mean going anywhere without making an effort to hide the visible symptoms of my diability, but also (thanks to the climate of fear that we now live in) to conceal the things which I can do on an irregular basis.

    Being obviously physically disabled, but dressed nicely, people will assume that my carer poured me into a suit.

    Trying to mask the physical disability (braces under clothes, rather than a walking stick) but commensurately having to wear loose/ugly clothes makes people assume that I'm not unwell, but some sort of lazy malingerer instead (and with my weight, that comes with a nasty dose of "probably a heroin addict").

    Ironically, carrying a stick to telegraph that I am physically disabled (since that is the one thing that will get me that bus seat or queue jump) usually causes as many problems as it solves, since putting my weight through my shoulders isn't good for them.

    And seconding Anon that admitting to being on disability benefits - when to the casual observer, my disability is nothing worse than a bad knee injury (they don't know that it affects everything) - is a minefield and generally not something I can do. I suspect this is because most people will, at some point, go to work with a sprained ankle or a dislocated shoulder, and will function basically "fine" - They don't realise that there's basically a log scale; One dislocated shoulder, that gets reduced, strapped, a course of tramadol and some physio isn't going to kill your carer. Ten dislocated shoulders a day, having to self-reduce, being on long-term pain medication, never getting physio in time and being constantly exhausted because of all of the above is a completely different matter.