Trans rights are human rights…

This month’s Charity of the Month is the wonderful Scottish Trans Alliance . If you’re not mad about the current discourse surrounding trans rights then this probably isn’t the blog for you.

Scottish Trans Alliance logo

The mainstream media in the UK is nothing short of vile to and about trans people and the government (uk) refuses to protect them. The political climate is repulsive. It feels very much like we are reliving the late 80’s persecution of gay people. Obviously both groups have been discriminated against outwith these periods, but there is a mirroring that I find particularly disturbing. We’ve been here before; we know those views are wrong and disgusting. Yet, here we are. Demonising, endangering and excluding people who have already had to fight too hard just to exist.

The Scottish Trans Alliance do incredible work in trying to ensure we live in the world in which a person’s gender identity, expression and history do not lead to discrimination. They participate in campaigning, legislation consultation, fund research and hold conferences/other forums to connect and support trans people in Scotland.

For the record, you are not a feminist if you do not support trans rights. Equally you are not fighting for diversity or equality if you want to remove letters from LBGTQ+. If like me, you know that trans rights are human rights please donate to Scottish Trans.

A protest with placards saying Trans Rights Now

You’re toxic…

If you are at all interested in dismantling diet culture you will be aware that new government legislation regarding calories on menus has now come into force. The legislation is part of the government’s plan to tackle ‘obesity’. Whilst I have a lot to say on that larger topic, I’ll stick to the calorie information for now. It will come as no surprise that I am not in favour of this development.

As a fat woman who spent years of my life embroiled in yo-yo dieting I know how dangerous constant calorie counting can be. In the depths of my disordered eating I was obsessed with calories. They were my enemy and required constant monitoring. I had calorie based rules for everything. Limits for every meal and limits for the entire day. If I was going to drink alcohol I wasn’t allowed any food. I counted the calories burned during exercise in an attempt to cancel out what I had consumed. I knew & counted the calorie content of everything; a smint, a grape, a sip of wine. Calories were omnipresent. It was an exhausting battle against my body’s basic needs and I was miserable. My quest to be thin damaged me, physically & mentally.

I’m not the only one nor am I the most severely impacted. We live in a world that is constantly reinforcing the message that smaller is better. Putting the calorie content of every item in every menu only compounds that. It won’t encourage ‘healthy eating’, everyone already knows what foods are full of saturated fat. What it will encourage is distorted view of what a healthy lifestyle is. It will support the diet culture narrative; fewer calories are better. Looking at the numbers every time we go out to eat will reinforce an unhealthy relationship with food. People will feel guilty for ordering the dish they want. It’ll trigger obsessive thoughts and behaviours in those who are dealing with or have experienced disordered eating. It will cement the connection in the collective mind between health and calorie control.

I posted about this legislation on my Instagram stories today and have already received multiple messages from people who have been distressed by seeing these menu additions. These are people trying to claw back control of their eating. People who have worked hard at ignoring that voice in their head telling them what they can and cannot have. They’re scared. Genuinely frightened of how they feel when they see signs telling them how many calories an adult shout eat in a day. Worried about the thoughts the calorie count on their coffee provokes. This isn’t a surge towards a healthier society, it’s a huge step backwards.

The problem with this move is the thinking from which it stems. Our government is telling us that being fat is a problem. That fat people are a burden we must shift. That isn’t true. There is no proven way to permanently make a fat person thin. Diets do not work; within 5 years 95% of those who intentionally lose weight will regain all they have lost and more. Calorie restriction is not sustainable. More over, it is not good for you. It ignores the intersections between weight and poverty & disabilities. Not to mention the impact of medical weight stigma on the health of fat patients. There are many lifestyle changes a person can explore if they want to improve their health. Focusing entirely on calories and weight loss is not one them. Health and weight are not intrinsically linked. Adding the calorie content to menus is dangerous. It sidesteps the issue of public health and props up stale old diet culture tropes.

I am not a doctor or an expert. I am merely an informed former victim of the diet industry. I am a fat activist and as such I can see that many people may dismiss me as having an agenda. With that in mind I point you towards the following resources.

Dr Asher Larmie

Marquisele Mercedes

Dr Joshua Wolrich

Gillian McCollum

Alishia McCullough

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If I had a little a money…

In recent weeks the cost of disability debate seems to be all over the place again. Mainly able bodied folk rudely telling disabled folk what we do & do not need. It is of course offensive and exceptionally annoying to be on the receiving end of this. Debating your reality us never fun. Hence, I thought I’d do a little run down of the day to day expenses that my disabilities incur. I am far from the worst case scenario, so bare that in mind when you’re processing this.

It feels important to make it clear that sick & disabled people are rarely just given the things they require. There is a myth that equipment, money, human support & treatments are just handed out to anyone asking. They absolutely are not. Any help we do receive is procured through humiliating assessments, long waiting lists & much general fuckwittery. At the end of which our requests are often denied. It’s a special kind of torture to lay yourself bare to unfeeling beaurocrats only to be gaslit & told you’re fine. Or, sometimes even more frustrating, It’s accepted that you need help & such help exists, but it is not available to you for ‘reasons’. We are screwed over time & again, left with the option of paying for the thing ourselves or never getting it. When the thing that must be paid for is essential, that’s not really a choice.

So, bearing in mind that many disabled people’s ability to work full time (or at it all) is impacted by their conditions, how do you think your pocket would deal with this.

Travel

I can’t get around much on my own as I can’t walk very far. During Covid public transport has been even less of an option for me. I have to take taxis everywhere. Using last week as an example, this costs:

  • Hospital App – £11.80
  • Visit Bestie – £11.30
  • Vet – £8.60
  • Pick up Bronan’s Prescription- £8.80
  • Post Office – £8.60
  • Work Meeting – £22
  • Weekly Total – £71.10

Pain Relief

Lots of really effective pain relief options are simply not available via the NHS. These are pain management related items I have had to buy.

  • Heat Pads – £5 per 3 pack.
  • Tens Machine – £65
  • Tens Pads – £5 per 10.
  • Long Hot Water Bottle – £20
  • Microwaveable Heat Pouch – £15
  • Dragon Balm – £2.50 a jar.
  • Lidocaine Patches – £60 per 10 pack.
  • Vape – £35
  • Cbd Oil – £15 per 50ml.
  • Freeze Spray – £1
  • Paracetamol – 56p per 12
  • Massage – £70 per 60 mins.
  • Kinesiology Tape – £5.50
  • Yoga Mat – £20
  • Foam Roller – £12

Disability Aids

I believe some local councils will fit disability aids in social housing or if people meet certain criteria. Unfortunately I do not live in social housing nor meet those criteria. Thus, I had had to purchase any device I require.

  • Walking Stick Ferrule – £5
  • Easi Reach – £10.99
  • Easy Open Food Containers – £25
  • Jar Opener – £5.50
  • Easy Veg Chopper – £20
  • Multi Bottle Opener – £5
  • Auto Can Opener – £15
  • Lotion Aplicator – £8
  • Walking Stick Seat – £25
  • Sock/Tights Aid – £8
  • Bra Angel – £17
  • Hook/Zipper Assist – £6
  • Suction Grab Handles – £28
  • Shower Seat – £35
  • Wearable Tens Holder – £20
  • Press on Lights – £10 per 3 pack.

Services

There are jobs that must be done regularly that I am incapable of doing. There is no support for such things, so I must pay people to do them.

  • Grass Cutting – £45
  • Hedge Cutting – £60
  • Weeding & Garden Tidying – £100
  • Wheelie Bin Cleaning – £8
  • Window Cleanimg – £8
  • Bathroom & Kitchen Deep Clean – £175

On top of the costs outlined most disabled people also report spending more on bills. My gas bill tends to be high as I have a greater need & more difficulty keeping warm. My electricity bill soars with the need to charge various essential aids & technology. My food shopping is increased by the need to purchase lots of pre prepared fruit & veg, free from items to accommodate my dodgy stomach, plus the cost of food waste when I am unable to cook/eat. Having everything delivered incurs a cost as does working from home, which both add to my outgoings. In fact, Scope reports that on average disabled people face extra costs of £583 per month. That’s only accounting for necessary day to day living.

Should a disabled person attempt to do anything beyond the basic there will of course also be additional costs. Try going on holiday, trying a new hobby, undertaking to study a new discipline and you will find that there are always extras/different apparatus to enable a disabled person to take part. Almost every aspect life presents a bigger bill.

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Ordinary pain…

I have shared some of my pain management techniques in the past. Recently I’ve been experimenting with some new methods and I thought I would share how I have been getting on.

First is a product I have mentioned before, but have only recently been able to properly try. Lidocaine Patches are hard to come by in the UK. They’re expensive and so can only be prescribed by the NHS for a very limited number of conditions. They’re mainly used inpatient and for short periods. I had been able to try them for an incredibly short period of time a few years ago. I found them helpful, but wasn’t able to get a longer term supply. The surge in my pain levels this year sent me into research overdrive. Time and again I read articles & personal accounts of how amazing lidocaine patches were for arthritis & fibromyalgia. I discussed it with my GP who agreed that they would be a good option for me, but she wasn’t permitted to prescribe them. After much searching I found a way to source the patches and bought them myself. They are not cheap. I had mine sent from Canada, 10 patches were approx £60. For me, they are proving worth it. The patches offer excellent relief for my joints. They don’t eliminate pain altogether, but they do vastly reduce it. Patches can be applied directly to the skin and remain on for 12hrs. They offer pain relief for that entire period (the last few hours you can feel their effect lessening). I have also found the patches ease my more extreme period cramps. My approach is to use the patches on my very worst or most active days. I wish I could afford to apply them everyday, but with head to toe pain, that’s just not possible right now. I’m not happy that NHS treats chronically ill & disabled patients this way. Tying a Dr’s hands & leaving then to prescribe treatment that they know is ineffective is utter bullshit. I am however crazy happy that I can now access the patches. I know that not everyone has the means to buy things like this themselves (I won’t always). There is much to be done in the fight for disability rights. In the meantime I am doing what I can to get by.

I’m late to the simple concept of squared breathing. In all the therapy, meditation, pain management sessions etc I have done it’s strange that I didn’t learn about before. I’ve tried umpteen breathing exercises. All touted as a wonder cure, none ever succeeded in doing anything but annoy me. Imagine my surprise when the simple act of breathing in for four, hold for four, out for four, hold for four and repeat actually worked. Squared breathing doesn’t reduce pain, it reduces the panic I feel when my pain starts climbing out of control. Holding off that panic is game changer. All the tension that comes with freaking out increases pain. The whirring fear severely impacts my ability to make clear decisions. In short, the panic makes a horrible situation worse. Carving myself a little bit of time to think with this exercise actually makes a big difference in those unbearable moments.

Diagram explaining squared breathing

Finally, we have CBD. Not a new or unknown thing. This is another one I tried before, but only recently perfected. In the past I tried cbd gummies & oil. I didn’t have much success with either. I found the huge array of products overwhelming. I couldn’t quite work out what strength & how much I needed to find relief from my symptoms. The gummies had no impact. The oil was a little better, but the taste made me gag (& sometimes throw up). The after taste contaminated my mouth the whole day. Every site I looked at seemed to offer different advice. I became confused and favs up. A couple of months ago I tried some disposable CBD vapes. A very knowledgable member of staff in a local shop helped me. In no time at all I had finally worked out the right strength for me. I have now invested in a refillable vape & stocked up on oil. I’m using 10% organic vision cbd oil with a minty fresh flavour, which is very palatable. It’s helping with headaches, muscle pain & stiffness.

Multi coloured vape pen on wooden background

As always, I want to remind everyone that I am not a medical professional. I am only describing what has worked for me. Please consult your Dr before making changes.

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Finally the tables are starting to turn…

Trump lost. Between unsubstantiated cries of fraud and threats of violence his supporters have already launched a new form absurdity. Backed by centrist liberals with the very least to lose, they are calling for the left treat to them with respect & kindness.

Yes, you read that right. Trumpets are forcefully requesting that we be mindful of how hurt they are right now. The ‘fuck your feelings’ brigade have had a change of heart now that their feelings are they ones in peril. ‘Don’t gloat’, they say, ‘You’ll never win us over if you aren’t nice’. This may well be a good strategy to teach small children embarking on team sports. It is not however, a rational approach to facists.

Hearing this woe is me nonsense from the right is infuriating. Though, Since hypocrisy & self interest are their watch words it is entirely predictable. The thing that’s really making me angry is the mildly left leaning white folk repeating it. Trump is trying to stage a coup and liberals are calling for reconciliation. Pleas to reach out to trump voters & forgive are frankly, repugnant. Nothing shouts my privilege protects me more than declaring amnesty on white supremacist, misogynistic, ableist, homophobic, transphobic, rapist, child abusers. Those who have been in the firing line of this administration need more from us.

They deserve our roaring support. Minority groups should be able to trust that we, the left, have their backs. They need to know that those of us with more privilege will not desert them as soon as we no longer feel personally endangered. They warrant more protection because they are valuable human beings. Also, because they more than anyone have worked to procure this victory. Democrats owe this presidency to black women & activist groups tirelessly toiling to get the vote out. It’s a punch in the face to forgive the people who object to their existence.

Your political beliefs are who you are. Conservatives have shown us what they believe. They have shown a willingness to exceptional harm. They have enjoyed the crass cruelty of the last four years. Trump voters were not duped. They are not all unintelligent. They chose him because he spoke their language. They want more. This is not the time to forgive and forget.

Healing doesn’t happen by asking victims to absolve their abusers. We’re not talking about people have seen the light & sincerely wish to make amends. Their views have not changed. They are still ok with children in cages, police brutality & turning women into breeding stock. Or at the very least are happy to be complicit if it benefits their life.

It is reasonable to remove such people from your life. It’s crucial that those who enabled Trump’s reign be held accountable. We should fight to remove these people from power and make their lives uncomfortable. Don’t patronise their businesses. Don’t tolerate their vile rhetoric in your schools, homes or work places. If you see a member of his administration in a restaurant you should feel free to tell them they are scum. Far right ideals didn’t begin with Trump & they won’t disappear when his term ends.

It is essential that we come together and make it clear that actions have consequences. You cannot be in favour of exterminating groups of people and be happily welcomed into decent society. I’ll consider absolution if I ever see any repentance.

In case you are wondering, I do not point this wrath solely at the Americans. We need to hold true to this doctrine in the UK. The Tories aren’t any less of a threat. They are engaged in the same jingoism. Austerity, Brexit, the hostile immigration environment are all part of the same right wing hellscape. Now is the time to dig in for real change.

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When you take you gotta give…

I’m going to begin this post with a disclaimer; my brain fog is currently set to victorian horror film. The covid has made my thoughts oh so murky. Please try to factor than in if I don’t reach my usual standards.

As a fat positive activist I am naturally drawn to lots of bopo & fat spaces. Unfortunately I have increasingly noticed a slide away from the radical in some of. I’ve been mulling this topic over for a while and I really want to talk about it.

We all know that the body positive movement has been corrupted by brands & individuals trying to cash in. The centring of slim, white bodies has neutered the original message. Body image issues are not the same as the same as the systemic discrimination of fat bodies face. It is infuriating to see people in socially acceptable bodies play at being fat by contorting themselves to make rolls. However, at least that problem is acknowledged & challenged.

I find the move away from the origins of body positivity much more upsetting when it occurs in supposedly fat friendly places. Body Positivity was created by fat (mostly black) women. It’s purpose was to fight the stigma & discrimination that fat people experience in all aspects of life. Self love & positive body image have been an offshoot of that. Personally, I am very much in favour of those ‘spin offs’. I think learning to accept & eventually love your body can be revolutionary. I champion breaking down the toxic things society has taught us about our bodies, but I still recognise that body liberation is not solely about loving our bellies.

Fat activism should put the most marginalised front & centre. We must make room for those who are least often seen or heard. We should focus on making sure that those individuals feel comfortable discussing the issues they face, sharing pictures & asking for help. Sadly, this is not always what happens. Many groups in the fat world are so intent on being all inclusive that they do not realise who they are excluding.

A drawing of a medicine bottle labelled cure with the text ‘self love can’t cure fat phobia’

I see too much time spent on body confidence. Straight sized people taking up space in fat groups because they feel bad about their bodies. Brands whose sizes stop at a 20 are praised & promoted. Descriptors commonly used in fat activism ( super fat, small fat) are labelled insensitive. Bigger people are sidelined. When they try to discuss how they are being pushed out they met with hurt feelings and all the reasons less marginalised people have it hard too. It’s beyond disappointing.

It seems the fight for fat equality has been forgotten. Body liberation is not about making everyone feel great about themselves. It’s about ensuring access to medical treatment, housing, employment for fat people. Challenging inaccurate measurements of health, sizism in public spaces and fat politics should be prime discussion points. We should be listening when people tell us they feel pushed out of a place that is supposed to be for them.

I believe that too many in the fat community are taking their eye off prize. We have become consumed with being welcoming & positive. Both great traits, but we have to prioritise. If straight sized and smaller fats want to be part of the movement we have to accept our privilege. Our voices should not be the loudest. We can be welcoming to allies. Those who are respectful and want to learn can included. We all have blind spots. It is ok to make a mistake or not to know something. It isn’t ok to not want to learn. If your response to uncomfortable truths is to play the victim, there isn’t any room for you in fat activism.

Graffitied wall with poster saying ‘acknowledge your privilege ‘

There are so many amazing resources available for anyone who wand to educate themselves. Instagram accounts with bite size information. Books, podcasts & blogs for every stage of learning. It isn’t fair to rely on the emotional labour of fat people who may not always have the energy to teach. It is especially unjust to plead ignorance and then object to the manner in which you are provided information. Discomfort is part of the process.

Plus sized woman faces a sandstone wall wearing top with multi coloured fringe. Text says  ‘growing is supposed to feel uncomfortable’

I know I have lots to learn. I step on toes without intending to. I hope I listen when I’m told I’ve caused pain. I am trying to be better. I am happy to acknowledge the privilege I hold and I aim to fight alongside those with less. I want a better world. The middle of the road is not the way to get there.

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You keep making me ill…

Body Positivity has crept into the public conversation. On the surface it seems body diversity is gaining ground. We see larger models in ad campaigns. The high street is beginning to pay a little more attention to fat customers. Social Media is awash with bopo content. However, if you scratch the surface virulent fat phobia still thrives. Any progress is good, but the dangerous aspects of weight stigma remains strong. Medical bias against fat bodies wreaks havoc. As a chronically ill fat woman I frequently face this issue. In ten years of battling illness and the medical community, I have seen little improvement.

When I began having health issues, I accepted the consensus that was fat was bad and thin was good. I was in the process of some seriously unhealthy dieting when I initially experienced quite serious gastric pain. There were other symptoms, vomiting & difficulty eating, but pain was the standout. I progressed from short bursts to hour long stints of excruciating pain. My GP said it was most likely indigestion and/or heart burn. They could be surprisingly painful, I was told. Change my diet, lose some weight and things will improve. I tightened up my already drastic diet and continued to lose weight. My symptoms did not improve. In fact, they worsened. I began to have prolonged periods of pain. It would last for days at a time, leaving me unable to eat or move or sleep. It felt torturous. By this time, I was being sent to A&E by my GP and attending myself when the pain become unbearable. Drs continued to tell me it was heartburn/indigestion. They all said the same thing, change your diet and lose weight. I was prescribed omeprazole but had no investigation. No one listened when I told then I was hardly eating. No one cared that I was losing lots of weight. All the DR’s were dismissive of my pain. Most were patronising. Some were hostile. No one helped. This continued for over a year. On my penultimate visit to A&E I was in so much pain I could barely talk. I had thrown up so much that I was only bringing up bile & blood. I saw a deeply unpleasant man who vacillated between me being an hysterical woman and being convinced I was an addict seeking drugs. He gave me a cup of peptac (which I promptly threw up) and sent me home. I felt utterly beaten that night. I knew something was very wrong.There was no way I could feel this bad and there not be problem. But no one would listen. I was tired of being judged and looked down upon. I went home and cried.

Luckily, my mum visited me a few hours later. She was shocked when she saw the state I was in and insisted we return to A&E. With someone fighting (& I do mean fighting) fit to advocate for me I was finally taken seriously. A Dr finally ordered the simple blood test that would diagnose me with pancreatitis. By the time those bloods results came back my body had gone into shock. Had I not returned to the hospital that night I would have likely died. I spent 7 days in HDU. I was catheterised. Fed only fluids via drip and given a morphine pump. I don’t even recall that first week in hospital.

Afterwards I discovered that although I didn’t fit the usual profile for pancreatitis (often older men, big meat eaters, heavy drinkers), I did have classic symptoms. The pain I had been describing was textbook. The onset and progression of symptoms was exactly what was to be expected of pancreatitis. Had someone taken a minute to listen to me I could have been diagnosed on my first trip to A&E. I really believe if I hadn’t been a fat woman, that’s probably what would have happened.

I had several more bouts of pancreatitis and a number of gallbladder issues were diagnosed in the subsequent months. Ironically, I was to discover that my weight was not the problem. The most likely culprit was spending my 20’s yo-yo dieting. The fad dieting & resultant weight loss that Dr’s had always encouraged made me ill.

Almost dying because medical professionals wouldn’t look past the size of my belly wasn’t horror enough, I have also since been diagnosed with fibromyalgia. A condition I did not suffer from before all the trouble with my pancreas. Pain specialists have told me that the physical and emotional trauma of such a prolonged period of undiagnosed severe illness is likely to have caused the fibro. So, I not only had to suffer multiple times with acute pancreatitis, I will now deal with chronic pain for the rest of my life. I wonder how different my story would if I were a size 10.

Near death experiences aside, almost every medical interaction I have involves some discussion about my weight. With multiple chronic conditions I am a complicated case. Every new symptom no matter how unconnected involves answering questions and listening to lectures about how fat I am. I must push for investigations & interventions because the first advice is always ‘lose weight’. Often, I must identify possible problems via my own research. You would be shocked at the number of times professionals have dismissed my concerns only for my theory to be confirmed when they finally do the necessary tests. I have my cholesterol, blood sugar and pressure tested an inordinate number of times and am usually met with shock that they all measure within ideal levels. When I tell medical professionals that I do not wish to discuss weight loss, my request is usually ignored. Explaining that I endured years of disordered eating and misery related to trying to reduce my size has no impact. My mental wellbeing seems entirely unimportant. Even when I am brutally honest about the fact the I used to starve myself, purge & use appetite suppressants Dr’s still advise diet plans. When my eating was at its most disordered, I was never dangerously thin. So, I was never considered at risk. The sizest attitude towards eating disorders is a whole safety issue in itself. For the record I am vegan with digestive issues that limit my diet. It would be difficult for me substantially change what I eat even if I was inclined to. All this falls on deaf ears. Weight loss remains a priority for almost every Dr I see. When I have stomach flares and lose weight because I can’t eat, I am congratulated. When I am in hospital unable to stop vomiting nurses will joke, they wish they couldn’t eat for a while. It is relentless and exhausting.

*

It really doesn’t have to be this way. Fat does not necessarily mean unhealthy. Even for those who would benefit from lifestyle changes will not be motivated by harsh judgement. The impact on mental health of all this fat shaming is enormous. We know that diets do not work. Most people regain all the weight they lose and more within a year. We also know that yo-yo dieting damages our bodies. Medical weight stigma makes people less inclined to seek medical advice. If you know you will be shamed and belittled and ultimately get no help anyway, you stop asking. This bias against fat patients is dangerous on so many levels. It’s a risk to our mental health, to our physical wellbeing and to our very lives.

* health-and-the-fat-girl.tumblr.com

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Now everything’s cool as long as we’re getting thinner…

I had thought that the world being turned upside down might put a dent in diet culture. It seemed that having a real and very serious health issue to contend with would get our collective perspective in order. Turns out that was naive.

If anything, it’s worse. The fat phobia has amplified. It’s coming from new & unexpected directions along with all the regular ones. It’s demoralising to realise how quickly all those supposed body positive allies throw the fatties under the bus. People I respected didn’t take long to start posting the weight gain jokes. Support for my own & other fat activist’s work has begun to feel like a part of a cultivated image. One that cracks under any pressure at all.

When you joke about the horror of gaining weight in public forums it isn’t harmless. Not only does it perpetuate stigma towards fat bodies; you’re also telling fat people what you really think of them. If you like your smaller body I’m delighted for you. Enjoy it. However, if your only response to inhabiting a slightly larger form is mockery or revulsion, you are not a Bopo ally.

This applies even more in the current crisis. During a deadly pandemic that grinds entire countries to a halt there are many things to fear. If top of your list is weight gain you might want to reassess your priorities. I am the after picture in those hilarious memes. Looking like me is not the worst thing that corona virus could do to you.

Barber before & after quarantine meme

When I’m not disappointed by folk I expected better from I am bombarded by the diet industry. The weight loss world has never missed an exploitation opportunity. Diet plans & work out programme ads have multiplied. Disreputable influencers can’t wait to wring some cash of out skinny whatever collaborations. Millionaire celebs holed up in mansions are giving us food plans to guard against stress eating. Meanwhile regular people struggle to cope isolation, lost income & fear of critical illness. The focus on the waist line is gross.

I’ve saved the worst for last. The truly terrifying part; medical discrimination. In the wake of covid 19 fat has been pathologised to an even greater extent. BMI has been incorrectly identified as a risk factor for both contracting the virus & suffering more severe symptoms. Weight has been used as a disqualifying factor when resources are scarce. In other words, fat people have been deemed dispensable. I know we’re not alone. Other marginalised groups (some I also belong to) have been marked cannon fodder too. I am ready to fight for the rights of all those people. It’s startling how many members of those groups do not reciprocate my solidarity.

If you’re thinking the jokes & fears have nothing to do with the medical discrimination, you’re wrong. By partaking in the toxic diet conversation you help create a society that considers fat bodies to be less worthy. We live in a world that permits Drs to ignore research on weight & its implications. We accept inaccuracies & damaging advice because the majority still believe that fat is bad. Fat phobia is profitable and fat people are paying the ultimate price.

Black & white photo of plus sized women in knickers holding her breasts

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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

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.