Dear “Norms”

Dear “Norms”

Sorry I have addressed you as “Norms” it short for normals as I believe that is what you consider yourself to be? I mean you don’t have any chronic illness or mobility issues, so you consider yourselves to be normal but what exactly is that? It isn’t meant to be derogatory and I know you are trying to be politically correct when you describe me as disabled. It’s just I am at a loss as to what I am supposed to refer to as. Using the term able-bodied puts me at the same disadvantage as calling you norms. So perhaps just for once we are equals. We equally despair of the names we use to refer to each other.

 

Labels for either of us really aren’t helpful and build up feelings of resentment on both sides.

Norms have so many labels for people like me that you don’t consider “normal” such as spaz, cripple, deformed, freak, gimp, invalid, handicapped (for those of you who don’t realise that the times have changed) and the one that is the nom de jour disabled. More examples of the awful words people use to describe us can be found here . All words used to describe me and those of my community have negative implications and are frequently used by norms as a throwaway term of abuse.

I hate the term disabled as it automatically puts me at a disadvantage. For a lot of “norms” it automatically means I am incapable of doing anything for myself or having an equal role in society. Those who think they are being politically correct refer to themselves as able-bodied but my fellow “sickies” and I are considered disabled. 

 There is no name for which we can describe our status without it having negative connotations. From the on-line dictionary “dis” in front of a word originally comes from Latin (who knew? blogging can be quite an educational experience) and is used to turn a word into a negative  e.g. dismissive, disadvantaged, disappointed, disappear,disenfranchised, disbelief and my absolute favourite disabled. 

We really need to work together to remove this stigma attached to people like me and come up with a term that is less negative and more realistic. Until that time though, I would prefer it if you just referred to us by our names instead of our perceived disabilities.

Nothing drives home my difference from you norms than being out and about in public. I have a couple of chronic health conditions that affect my mobility they do not affect my intellect yet  some of you seem to assume it does. That irks me somewhat. I don’t assume things about your intellect just by looking at you. I have to ask who gave you these special powers and why don’t I have them? Why does the sight of a wheelchair send you into such a frenzy of uncomfortableness? Just treat me the same way as you would anyone else. My wheelchair  is just a mode of transport, I don’t need an interpreter so stop talking to the person pushing it instead of me. I just want to be treated like a “norm” why is that so difficult?

This inability to communicate with people like me affects all different norms including those in the medical profession, people who should really know better. Some of my most disappointing and humiliating interactions have been with those in this field. Despite holding a conversation with me moments earlier, as soon as my husband enters the room all of your questions will be directed to him. Which is really stupid as my husband could probably name one or two of the medications I am on but not the other 15. Nor could he tell you what my main difficulties are firstly because they change from day-to-day and secondly I like a clear divide between his role as my husband and that of a carer. Its become so bad of late I have started attending medical appointments alone wherever possible. I have had to change my behaviour to force you into changing yours. Would norms have to go to medical appointments unsupported by their spouses / partners just to be treated like a human being?

There are lots of things that irritate me that norms do without realising the impact of your actions. Believe me I think your motivation comes from a good place on the whole and not out of ignorance. My letter to you is just challenging you to think a bit more about how you treat people like me. I know that the majority of you would never deliberately suppress another human beings rights. All I am asking for is to be treated like an equal and not a lesser being or a thing of pity.

On social media over the last 12 months or so there have been lots of memes posted that picture disabled (what else can I call us?) people as figures of inspiration. In our circles these memes are known as disability porn. I am sure when you post them that you have no idea how most people with a disability react when they see them, most of us spontaneously combust with rage. Let me be clear I have no problem with people trying to raise disability awareness that’s not the issue here. What I have an issue with are the memes designed to show “you” how we have such wonderfully positive attitudes and we never let anything get in our way…..bullshit! There are lots of things that get in my way badly designed ramps, narrow doorways, inconsiderately parked cars and steps, just to name a few. I don’t always have a positive attitude some days like the rest of the human race I get the blues, hell I have even been clinically depressed. So don’t use us as your inspirational memes it dehumanises us and sets us apart from the rest of you. If you are interested there is an excellent talk by Stella Young here, explaining what is wrong with disabled people being used to inspire you.

I am curious to know as well why a different set rules for the use of social media apply to you. When you are sick with a cold / sore throat / chest infection etc you are allowed to post about it for days on end. You are allowed to let everyone know how sick you are. Yet if I post any details about my condition I receive messages saying that I am being negative, it’s depressing you or that my life really can’t be that bad, after all I don’t have to “force” myself into work whilst ill ( you seem to find it easy to forget that I did force myself into work for 18 months before I was medically retired by the company I worked for which at the age of 34 was no easy feat). I got so fed up by these messages from so-called friends I removed you from my social media streams and then set up a page linked to my blog so that I could post there free from criticism.

I have days where I am in pain, feel awful etc but I am not allowed to express myself on social media as you would. You negate my suffering by forcing me to self censor rather than face the backlash. Why is my suffering not as worthy as yours? I am not alone in the disabled community when feeling that we can not be honest when expressing how we feel. We have learnt the hard way that to speak freely means social exclusion. It seems that you norms are only prepared to accept the sanitised version of health problems. As S. Kelley Harrell said

 “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.”

 

I think she hit the nail on the head with that statement. We don’t as a culture seem to be able to understand that many diseases / conditions are treatable but not curable. Which means that many people will live with a progressive/non progressive condition for the rest of their lives. 

Lots of norms casually say to me in that if they became disabled they wouldn’t be able to cope or would kill themselves. They say they don’t know how I do it. I do it because there is no other choice and I don’t feel that my life has become less due to the chronic health conditions I face.

This post is not about us and them, it’s about striving to be equal and not less. I am not anti-norm I used to be one. Until it happened to me I gave no thought about the words I used or the actions I took and how they could detrimentally affect those with a disability. I never gave a second thought about disabled access and how 9 times out of 10 its pretty ill-conceived. I want to be included in the world, not your world our world.

Thanks for reading my letter to you, I hope it inspires you to change the way you think about the 16% of us of working age that are “disabled” in the UK.

Rachel

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4 thoughts on “Dear “Norms”

  1. Rach,

    Very good points. I was on the other side before I had a chronic illness. I would and still do treat everyone the same way that I want to be treated. In my line of work if I would encounter two people one being a patient and one being a caregiver I would always address both parties.I feel that treat others as you want to be treated is huge when it comes to dealing with individuals that are chronically ill.

    On the subject of people not wanting to hear a person moan because they are chronically ill, I think it makes them feel uncomfortable. Additionally, nothing of this nature has happened to them. I have had friends like this. People that don’t have a chronic condition also feel that treatment means cure so you should be up and at ’em and life should be just grand.

    These of course are just my opinions. Some people are far more understanding than others.

    Bee

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  2. Thanks Bee for reading and commenting on my blog post.

    Its always very tricky people have no idea about chronic illness unless it happens to them or a loved one. We are not geared up as a society to make all of us equal. With special schools etc we keep the disabled separate. Children are far more accepting if we educated all children together maybe we would lose some of the stigma attached to disability.

    I don’t want it to be us and them but all of us together. That way we can move forward and be more empathetic as a culture.

    Thanks for taking the time to read and leave a comment.

    Rach xx

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  3. I have been called all of the above, Spaz in particular, enjoined to get out of my chair and get a job. To be spat at by people who claim that Disabled People are stealing their tax and NI payments. They do not know me from Adam. That I’ve worked for 40 years including 22 years in the Armed Forces.. However, you would not expect that it would be worse under one Government or another would you? yet it has become worse since the arrival of the present group of Social Democrats. They belive it is right to place the burden of reparations for the economic woes in this country upon the poor, the disabled and those who have least rather than force those who were the true instigators of the collapse, the Bankers and those in the top 10% richest who avoided paying their full tax bill, a figure far in excess of the money clawed back in Welfare Benefits. Claiming that all should be forced into work. To work for those same businesses that employ tax avoidance schemes whilst receiving government pay outs to employ long-term benefits claimants on Zero Hour contracts and letting them go so that they can begin again and continue to receive the backhanders from their Eton Classmates. In many cases the abuse and threats appear to come from those who look as if they’ve never worked in their lives. How can they do it, the Moral Panic created by the Right Wing Press egged on by Government Ministers and Press Agents most of who have done little but be Politicians. They have no idea what it’s like to live on benefit, they’ve never wanted for anything in their lives. They have little idea how Disabled People live day to day, how we get rich on Welfare Benefits. If it wasn’t so ludicrous I could cry. I can’t believe how I was harangued for using the lift at the Railway station a few weeks ago. Following 5 hours on a train a couple who could walk, able to use the stairs opposite the lift gave me a hard time for holding them up because they had a train to catch. If I could walk I could have gotten to the top of the stairs far quicker than the lift did. Can you believe such idiocy? So Rach, I hope that you gain strength from knowing your not alone. I know it sounds trite and asinine but that’s not my intention. My hope is to bolster your confidence and that you’ll be able to draw strength by praying [or plain hoping] that come the General Election they’ll be shown the door. The problem will be if they are re-elected because all benefits will be removed if they have their way. The poor and the dispossessed will be well and truly out on the street. So fingers crossed that they get their just desserts. That whoever is voted in will have an ounce of Empathy for those who are less able to support themselves in this very unequal society.

    Ciao Rach

    David

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    • Hi David,
      Thank you for taking the time to read and comment on my blog.

      I completely agree with everything you have said. This government has made it so much worse for the disabled (let alone the other groups they have targeted single mothers, the unemployed etc). The crime figures (disability hate crimes) have risen enormously and I know of no disabled person that has not been subjected to abuse.

      It is such a shame that even health care providers have been drawn into this awful situation – their crass and inane questions which I will allude to in my post on Thursday will illuminate this more.

      Its the ignorance and downright hostility that I object to. It is as if some people believe that being disabled is a lifestyle choice. They assume all the disabled are on benefits – they forget things like medical pensions etc or the fact that the person may not have always been disabled.

      Until we are seen to be equal human beings with worth and value I am afraid things will never change.

      All I can hope for is a change in government but with Labour now buying into the idea of the feckless poor I fear there will be very little change.

      Thank you as always for your support.

      Rach x

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