“You Should Get A Job…”


Wheelchair“… And then you’d be getting paid for something worthwhile complaining about.”

I looked at her; a pretty woman with blonde hair, a stinky attitude and a smug expression on her face. I stand some inches taller than she, and yet I could feel myself shrinking under her gaze as she regarded me in the same way you’d regard something nasty that found its way onto your shoe.

All because, in appearance, I look fit and healthy; therefore I must be one of those so-called benefit scroungers and the scum of the earth.

I am not one to be cowed by anybody. Looking directly back at her, refusing to shift my gaze to the ground with a shame that I shouldn’t have to feel, I quietly asked her which part of “Having epilepsy” she didn’t understand, and if she had any idea how much of a danger my condition poses to anybody and everybody around me. I asked her how she dared to judge me when she knew nothing of the many years now that I have been trying to find a suitable job for myself.

I asked her how she would feel if, every time she looked for work, she had to hear the words “I’m afraid we’re out of options given your limitations” (Job Centre) or “We’d love to hire you, but…”

At least she had the grace to look ashamed, I suppose – which is more than she had bothered to do when I’d turned up on her doorstep to express my concerns about the welfare of her dog.

She knows – because she has seen me out and about – that I rarely need my wheelchair (I purchased that specifically for getting around town and being able to exercise my upper body locally when I can’t trust my legs – you need to be strong in order to power a wheelchair alone successfully, and I am not). She knows that even my use of a stick very much depends on how far I have to walk and whether or not D is with me. Heck, she’s even witnessed me collapsing across the road from her house (whatever it is she does from home – and I wish she’d tell me what it was so that I could get a paid job working from home too – seems to involve plenty of time to spy on the neighbours’ comings and goings whilst leaving her dog to bark itself hoarse in the back garden).

The oncoming storm

The oncoming storm

The neurological pathways of the human brain are busy enough when the brain is normal. Take a look at the above picture and ask yourself how somebody can think clearly, stay concious or even get out of bed with all of this going on to some degree or other all the time, every single day. Just because you can’t see it, that doesn’t mean that it isn’t happening. The person you are so happily conversing with could well be showing outward signs of calm, but inwardly they may be struggling to keep hold of the thread of the conversation because they’ve “blanked”; they could be hiding some truly horrific-looking injuries underneath their clothing because, yesterday, they had a seizure and fell down the stairs, or they blanked and slipped, dislocating their arm at the same time.

Arm1Just like this, you see?

I do actually work from home, as it happens, but that work (Media Volunteer) is sporadic and I don’t get paid for it. That doesn’t prevent me from enjoying it and coming into contact with the wonderfully friendly team at Epilepsy Action though – I’m still doing something that could change somebody’s life for the better.

I wasn’t even going to broach this subject because my concern for the woman’s dog is the most important thing, but a blogging friend gave me pause for thought in a comment she left me, and I realised just how much this callous statement hurt me at the time. Another twist of the knife; another painful and shaming reminder that other people are able to do things that I physically am not able to do, and that some of them see this as a failing in me and feel that it’s okay to rub my face in it.

If I could swap my epilepsy for any condition that had a fair chance of improving then I would trade it in a heartbeat so that I could go out and be useful again – but since that’s not going to happen any time soon I just have to deal with it and hope that, some day, we will find a medication that will control my seizures enough for potential employers not to fear me. Perhaps one day my brain won’t be an unstable, unpredictable bomb just waiting to detonate at the wrong moment.

I gave up looking at the jobs section of the paper a long time ago; the physical longing to be able to be interviewed for “that job” and the tears of frustration through knowing that even turning up would be a waste of everybody’s time and another blow to my fragile self-esteem became too much.

We’ll find that perfect medication, one day, and I will find that job that I want so badly. I absolutely refuse to give up hoping for that.

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About Missus Tribble

Media volunteer for Epilepsy Action (UK) and advocate for both epilepsy and autism awareness. Seamstress, cross-stitcher, sci-fi lover, ukulele player and Chelmsford's own Pickling Pagan who wants to inherit a TARDIS when she grows up. In the process of writing an as yet unnamed book, with anecdotes and information about being epileptic and autistic - and seeing the funny side! Also an entertainment journalist for What Culture, where I write about Doctor Who.
This entry was posted in "Mutants", 2013, Always Look On The Bright Side Of Life, Animal Neglect, Animals, Attitudes, Barking, Born This Way, Bullies, Bullying, Cruelty, Disability, Disability Aids, Disablism, Discomfort, Dogs, Dreams, Emotional Pain, Epilepsy, Epilepsy Action, Epilepsy Awareness, Injuries, Medication, Neurological, Not A Supermarket Tomato, Nuisance, People, Personal Goals, Pets, Proud To Be Me, Rant, Seizures, Self, Stupidity Gets A Tag Now, The Ignorance Of Strangers, Wheelchairs. Bookmark the permalink.

36 Responses to “You Should Get A Job…”

  1. It hurts me that people are so judgmental. I want to give you a big hug and take some of that pain away.

    • It’s not something that anybody should have to get used to, but those of us with “invisible” disabilities have to hear this all the time. Why does it take her seeing me in a wheelchair to realise that there is a perfectly good reason that I’m stuck at home all day, and that it’s not through choice?

      Thank you for the hug xx

  2. Carol aka Charliesmum says:

    I hope you can rescue that dog some day. I think your concern is commendable, and the fact you don’t blame the poor animal for it’s behaviour. And good for you for standing up to that cow. I also want to point out that you are an amazing writer. Really.

    • Thanks Carol. I was always brought up to stand up for myself, and *nobody* is going to look at me in disdain when they don’t even know anything about me!

      I quipped to a friend earlier that I could always offer to trade her dog for my Tarantula. Tarantulas need a safe environment, hiding places, food about once a month, clean water, and minimal cleaning compared to other pets (just remove poo and bits of uneaten prey on a regular basis). Also, a Tarantula doesn’t sit in its vivarium and bark at you all day!

  3. The Heretic says:

    I would crop-dust that woman! Give her a good whiff of something sour to go along with her attitude. :D

    • Perhaps I’ll hang my Tarantula’s first moult over her front porch on Hallowe’en ;)

      No; I’m not that cruel (and am hoping to have a moult to hang from my own porch anyway!) but she definitely needs to sort her attitude out big time.

  4. develish1 says:

    *hugs*

    I have no words for that level of unkindness, so I figured a hug was good instead

  5. I’m so sorry to hear that you had to indure this woman’s ignorance, it’s so frustrating to hear of such thoughtless insensitivity to some one who is so vulnerable. My heart goes out to you. This week I had to take time off work and colleg because I started seizing because I caught a virus. Thankfully my new employer is very good and I don’t have to put up with any of the nonsense I had with the last one, but I know I am very lucky and I will keep my fingers crossed that you find some medication that gets you back into a stable place. Much love Ruth x

    • Thank you Ruth. I just couldn’t believe her arrogance and self importance – she might as well have said to me “I work, you don’t, you’re nothing” – because you just know that’s what she was thinking!

      I’m pretty thick skinned, but what if she’d made those implications to somebody a lot more sensitive than myself? That would be horrible.

      • I’m really glad that you are such a tough cookie that you could challenge her about her views, it is a credit to you that you can confront people with such narrow minded views. She will at least think twice before trying to voice them I hope xx

  6. *hugs* people dont understand untl they feel on their own skin hun.. don’t worry!

    • Thank you sweetheart. I wouldn’t wish my inability to work on *anybody*, but I think that sending this woman to look after disabled individuals who want to work but can’t find employment would really open her eyes, even if she only had to do it for a day. Let her speak to some brilliant minds whose bodies and/or brain synapses preclude them from an employer looking upon them favourably.

  7. “Just because you can’t see it, that doesn’t mean that it isn’t happening.” A thousand times this!

    I do want to say I am sorry if the comment bought back the pain of that encounter too because having to experience that once is one time too many.

    When I read that particular part of the neighbour’s remarks it really triggered my anger. As it does now to see it laid out in full, except that now it makes me glad that you could and did stand your ground and point out the wrongness. I’ve never written about this at length but as someone who has fought against depression since my teens; the attitudes and prejudice that go with not being able to ‘see’ a mental and/or physical health issue or disability makes me want wear a wear a badge or t-shirt with that ‘Just because…’ phrase on it.

    You are a brilliant writer and advocate and if I ran a business that employed people I know I’d want to recruit you for your skills and learned experiences. I very much hope you can have the chance, medication allowing, to do the job you want one day.

    • Don’t worry; your comment didn’t bring back any pain – just reminded me that I had to stop and think for a moment because I was so shocked by her smug, self-complacent attitude. In a sense I even pity her for her way of thinking – because I am rich in ways that she cannot possibly fathom, and it has nothing to do with money.

  8. cross(stitch)yourheart says:

    Saying something like that is bad enough when you don’t know the situation but down right ignorant (this word doesn’t seem strong enough but I can’t think of a better one) when you actually know someone. I’m glad you’re able to get passed comments like this and stay confident in yourself. You are an amazing role model.

    • I wouldn’t call myself a role model for anything other than geekiness, but thank you anyway! My husband and I saw her while we were on our way to the shops a little while after this (the last time I was able to get there on foot before hurting my arm) and, not only could she not look at me, she actually hung her head. I am in no way a vindictive person, but I was still glad that I had shamed her.

      My Nan always said that I was born with the fighter in me; I’ve survived so much in my life before D and I am not going to fail my Nan or my memories of her now :)

  9. InkAshlings says:

    I can’t stand it when people say that. I wish our respective governments didn’t keep pushing that line too. Shock horror. Some people don’t work because they can’t. End of. My Mum has had an operation on her neck, knees and on her spine twice and you really want to blame her for not working, idiots? Really? Get a grip. I’d like to see them try in the same situation.

    Hugs!

    • While my Mum was undergoing chemo she hated every moment of not being able to get in her car to go to work – my stepdad practically had to tie her to her recliner until her medical team said she could go back! Both of her knees have been replaced (she sets off the security alarm in every shop she visits, to everybody’s amusement!) and so she’s grateful that she’s never had a job where she’s had to rely on her legs. I honestly don’t know how she’d cope if she had to accept never working again, and so I’m very glad that she can continue.

      I’d go stagnant in an office because my ASD means that I find it impossible to sit still – plus I gain pleasure from meeting people and caring for their needs, but working from home would be just ideal if I knew where to look.

      My neighbour is just ignorant; she’ll not look down her nose at me again though.

  10. crispinjohn says:

    It annoys me so much that people can be so judgemental but I am thrilled that you had the fortitude to challenge this woman. I love the way you write about your experiences and this one in particular’s given me food for thought.

    I’m lucky to have a job but have been off for the last two months because the E has taken over and it’s no longer controlled. On the one hand they did send me a “get well soon” card (so presumably they know something we don’t and by the time my latest fit note runs out there will be a cure), but on the other I know what sniping there’s been behind my back, and apparently I’m “a danger to others”. If I operated a crane I’d agree, but I work in an office. I’m looking for something I can cope with a little better, but dreading the same “I’d like to hire you but”….

    Sending hugs and positive vibes!!! :)

    • Hey, long time no see – I was wondering about you just the other day!

      I used to be an upholstery sewing machinist, but after a couple of years I didn’t feel safe to use the industrial sewing machines, and so I became a care assistant instead. I’d probably still have that job if I’d remained in my home town, as they were very understanding and knew me to be a good, reliable carer. I wanted to train to become an RGN.

      When I settled in Chelmsford with my now-husband I was actually accepted as a full-time carer at a nearby BUPA home – only to have them wibble about the E and offer me “bank” hours instead (which are sporadic and not worth getting out of bed for). I was furious and made a complaint, only to be told “It wasn’t because of your epilepsy”. Well, if my epilepsy had nothing to do with it, why were they the first to mention it when myself and my disability advisor challenged them? Neither of us had a chance to say a word about it before they started defending themselves against discrimination allegations, which told me all I needed to know really – I *was* being discriminated against. Sadly, they’d made damned sure to “lose” paperwork and not send me a letter through the post offering me bank hours – they kept radio silence so that I just sat here waiting for a start date for a while before getting my advisor to contact them – so I had nothing to take to CAB or a solicitor.

      Now, if only The Guardian would pick me up from What Culture and offer me a decent salary for a weekly column that I can write from home… :)

      • crispinjohn says:

        I’ve been off blogosphere for a while but back with a bit of a vengence now I’ve got some more time on my hands, so I’ll be about! It doesn’t surprise me that paperwork “goes missing”; in a previous job I had to do an audit related to healthcare provision (or the lack of) and just when it was starting to get juicy the next file just couldn’t be located in the archive. Funny that….

        The really frustrating thing for me at the moment, and I guess for you and loads of others, is simply that I really want to work. I’m pretty good at my job when I’m there (but of course I would say that!) Yet they are about as flexible as a slab of reinforced concrete and have the charisma and common sense to match. Much like your neighbour I suspect. Anyway rant over, until I finish off my next blog….

  11. argylesock says:

    You speak truth, sister.

    • Don’t worry my fellow ‘Nammer: my local MP dreads my name coming up in his email (I received a snivelling apology by letter today, for the delay in checking something out for me that I pointed out to him months ago). Some ignorant, snotty woman over the road isn’t going to escape my attention!

  12. I don’t have epilepsy, but I have my own “invisible illness” that causes seizures and syncope, amidst other shenanigans. Yet, most of the time, I look perfectly normal/healthy/able/whathaveyou, leading people to think I’m lazy or faking or that it’s all in my head.

    • My ex husband tells everybody he meets that I’m not epileptic and am nothing more than an attention seeker. I found this out through his last girlfriend, who happens to be my uncle’s stepdaughter! They broke up last year but she and I are really good friends now. I was so shocked and hurt when she told me what he’d been saying, but she told me not to worry because she never believed him anyway.

  13. I just met (properly; I’d met her in January but not spoken to her then) a girl who has epilepsy and she’s had some sort of procedure done that means she has to wear a magnet on one wrist, so that if she fits, you just have to (yeah, like it would be that simple) get hold of the wrist and swipe the magnet along her left collar bone. She does take medication as well, and does struggle at times. However, she’s in a good place (a postulant in one of the other religious communities and she’s about to ask to be clothed as a novice) where they all understand and know what she needs.

    I wondered if you’d ever heard of anything like that?

    • I’ve honestly never heard of such a thing – but with that said, it sounds as though her condition is far more serious than mine. I *could* actually work, but nobody will take me on because of E, and it’s so frustrating!

      • She was fine all the time she was with us, as far as I know, but I guess when you’ve lived with a condition for a significant portion of your life and have got the meds sorted as well, then it does make things easier to deal with. And while she’s technically not working, she is living a hard-working life because it’s no walk in the park, this living in community business.

      • My Mum and I were talking on the phone yesterday – Mum about living with cancer and myself about living with epilepsy. I told her that people often ask how I can make light of broken toes, dislocated arms, being carted off to A&E etc. and my response is generally “What choice do I have?”

        If I have to live with this, I may as well find the funny side.

        I wish that “community” outside of an Order were the same as it used to be, when communities hunted, bred animals, farmed, harvested, ate and drank together. It must have been hard work, but still so rewarding. As a species we’ve gone soft now because everything is too easy, and we’re all so secular from each other unless you pay to be a member of a group once a month :(

      • Yeah, the problem is “I-want-itis”. Instead of living in streets where people talk to each other, everyone holes up in their own house and doesn’t want to know anything about their neighbours unless it’s juicy gossip they can pass on. It’s horrible.

        I reckon if there was some sort of apocalypse type event, then the people who would survive would be those who have always lived off the land and lived in community, such as the tribes in Africa and South America, and some of the survival experts, and people who have chosen to live in community and are therefore used to working together.

        People don’t want to let other people in because they then may have to give them something, or because they don’t want to risk the idea of things of theirs being stolen. Wealth doesn’t buy happiness, it only generates more worry about what you have and don’t have.

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