Dear “Norms”

The post that was prepared last week and had to be replaced by an old blog post at the last minute, is again sat waiting to be edited and polished. I have now managed to come down with a UTI that has zapped all the energy I never had anyway! So apologies but I have had to re blog Dear “Norms” from last year. This got an excellent response on social media and I wanted to thank everyone who shared their experiences.

 

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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