A privileged person’s guide to privilege…

I will never understand why the concept of privilege is so offensive to so many people. Mostly, let it be said, privileged people. It is beyond me why it frightens people to look at the privilege in their life & say yes, that has helped me and no, I did nothing to earn that aid. ‘Owning your privilege’ is merely acknowledging your good fortune. Privilege does not make you bad a person. However, refusing to countenance it’s existence makes you a bit of a dick. Since no one wants to be one of those, let’s go through this together.

If you belong to a group who hold power in society, you have privilege. If you belong to a group that is considered the default in society, you too have privilege. The fact that you do not face institutionalised discrimination just for being who you are is a huge advantage. Being born white, straight, cis, able bodied are all privileges. You will not face prejudice or disadvantages for merely existing in your body. Life is not a level playing field; some of us are sprinting before the starter’s pistol sounds.

Part of this kind of privilege is the fact that you did nothing to earn your advantage. Thus, many people will rail against the notion that they should have to apologise for holding it. Well, no one is asking you to. You are not responsible for the fact that you are white or male or cis gendered. No one is critising you for being any of these (or any other privileged) things. The problem comes when you refuse to own the benefits you have gained from life’s lottery. When some people have to struggle just to reach the starting line, ignoring that becomes offensive. We do not choose what privilege we come into this world with, but we do choose what we do with it. Acknowledge the factors beyond your control that eased your path. Then use your position to clear space for those without your advantages. 

Some of you may be thinking I have one of those privileges you speak of & my life is hard, so I don’t feel ahead of the game. Privilege is not a guarantee of fabulous life. You could be a straight, white, cis, able bodied man & still have terrible things happen to you. The privilege comes in the fact that they did not happen because you were straight or white or cis or able bodied or male. No matter your situation the abscence of the barriers that come with being a minority are still always advantageous. 

It’s also important to remember that it is possible to have privilege in one area & none in another. For example I am white, from a comfortable back ground, well educated, cis gendered & straight passing. I am fully of aware of the advantages my parents have given me and of the discrimination I have never had to face. I hold a lot of privilege. However, I am also disabled, I’m female & I’m fat; all of which incur significant hardships. My daily life is a slog. I do face discrimination & I am discredited, but I’m still lapping my trans, BAME, LGBTQ, impoverished (& so many more) brothers & sisters in the race of life. 

So, privilege isn’t always cut & dry. It does not translate to a perfect life. Nevertheless, it’s a head start. It is a whole bunch of problems you’ll never have to even consider. Privilege is being able to dismiss that the premise is even real. 

In keeping with my entreaty that you use whatever privilege you have to help dismantle the current societal hegemony I would encourage to read these voices on the topic.

Lori Lakin Hutcherson

Strong in broken places

Taking up too much space 

That crazy crippled chick

The Second City

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Let’s talk it over…

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world.