The Greggs' Effect

Veganism, classism and disableism

I’m pretty sure everybody in the UK and a fair few people outside it will have learned that Greggs – a low cost bakery chain – released a vegan sausage roll in early 2019. It caused much consternation amongst some quarters, most noticeably those who look up to the conservative “political pundit” and former game-show-host Piers Morgan. Piers’ over-the-top and toddler likerejection of the vegan sausage roll was a rallying cry for those who hate veganism generally, people who simply couldn’t understand why vegans might want a budget bakery item. Sadly this criticism and disbelief wasn’t just limited to those of a more socially conservative bent. There was also a surprising amount of wailing from people within the vegan community. It’s not healthy enough? Why would you want a meat replacement? If you’re vegan why are you buying from Gregg’s at all.

In some ways this second wave of criticism was actually more frustrating. After all anybody who doesn’t belong to the cis-male, white, straight, “British” group is pretty used to at some point coming in the firing line of Morgan and his brethren. That’s sadly the way of the world: stray from the path of what “they” have defined as “normal” and you will be criticised (or downright discriminated against). But when you are part of a counter-culture or alternative lifestyle group, you generally expect a certain amount of solidarity from within, even accounting for differing opinions and personalities. So a wave of criticism from your own “side” especially when you are also being attacked from other quarters can really knock the wind out of your sails.

photo from wikimedia image shows the store front of a Greggs Bakery. It has a blue and white sign with an orange square logo)

So now it’s almost 6 months later, and the financial news is reporting that Greggs is reporting soaring profits and steady gains in the stock market almost entirely attributed to increased sales of and because of the vegan sausage roll. With that success, Greggs is talking about expanding their vegan range, which for me is only a good thing. But with that comes controversy. Remember that criticism from other vegans I talked about only two paragraphs ago? Right that becomes an issue. You see there is a perception from non-vegans that veganism should be “healthy”, and this is a perception that is held up in some quarters of the vegan community. Vegan food should be “healthy” natural, full of vegetables, whole grains and other nutritionally superior goodies. Additionally we shouldn’t want to be mimicking meat because this is somehow ethically unsound and requires more of those pesky “unnatural” processed foods. These are the sorts of people making suggestions for new Greggs products that include lots of different vegetables and interesting grains, less fats and less delicious golden pastry.

But here’s the thing – nobody thinks that Greggs is or ever has been a bastion of healthy lifestyle. Nobody, vegan or otherwise, goes to Greggs expecting a nutritionally balanced, “healthy”, whole foods, natural lunch. You go to Greggs because you are hungry and it’s there and sometimes a baked good is exactly what you fancy. And that’s entirely ok.

Initially this debate may look fairly inconsequential and not something worth spending much time on. If one group doesn’t like fake meat and another does what’s the problem? The problem is that this actually becomes an argument about disablism, classism and food snobbery within veganism and other lifestyle choices.

So let me tell you about an experience I had just today. For context, I have been to Greggs only once since the introduction of the vegan sausage roll and I wasn’t a frequent visitor before that. Recently my CFS/ME has been worse than usual and I’ve been having a higher number of high fatigue days. I’m finding it more difficult to balance out exertion and rest as needed. So on this particular Thursday I had been to get my hair done. Due to the timing of the appointment, I hadn’t had a proper lunch though I had had a snack. My mid afternoon I was very hungry and my bloodsugar was low. I was also starting to struggle with fatigue. Due to that difficulty I wasn’t thinking straight and instead of getting a taxi from the place literally next door to my hairdresser’s I decided to get a bus half way home and walk the rest. I was soon really exceptionally fatigued and struggling to walk much. I was shaking and walking with slower and slower steps. I was also very hungry. All I wanted to do was sleep and eat, preferably at the same time. I hadn’t budgeted for lunch out, after all I’d just spent money on getting my hair done and now had to be conservative with spending. Luckily for me my route took me past a small shopping centre. So now I had options. Supermarket, discount food store, chain cafe and Greggs. In reality due to my fatigue and my budget I didn’t actually have that many options at all. I did not have the energy to walk around a supermarket looking for individual easy to eat vegan items. That would probably end up costing around £5 too which is more than I wanted. Likewise with the discount food store – it may be discounted but what they have available is varied and it would take a lot of energy to search out and check labels. The cafe would be more expensive and I’d probably only be able to get a cookie. Greggs and their vegan sausage roll was looking like some sort of greasy baked good oasis.

I got my sausage roll (the very last one) and ate it in a very few bites leaning against the wall and in short order the signs of hypoglycemia subsided and I and a fraction more energy. I was only £1 down to boot. It only took a short rest against the wall (because all the benches were out in the rain) and I judged myself able to make it home on foot. Thank goodness it was downhill from there. Even then the last 100m were painfully slow and on getting home I still had to have a protein smoothie banana and then fall into a solid sleep for two hours.

photo author's own. image shows an agender person wearing glasses and a black hoodie. They have green and purple curly hair and are leaning against a wall holding a sausage roll in a Greggs paper bag to their mouth

But what’s the point of this not so thrilling look into the average day of somebody with ME? Well here goes. That slightly greasy, warm, flaky pastry encases lump of processed fake meat was exactly what I needed right then. Regardless of what I actually like the taste of what I needed was something simple, that I could eat right then and there with one hand, that had protein fat and carbs, that required little thinking, no checking of ingredients and of course was cheap.

Don’t get me wrong I love good food. I love home-made-from-scratch food. I love piles of vegetables and interesting ingredients. I am the sort of person who makes asparagus and cucumber beurre blanc with pasta as “an easy simple meal”. I can frequently be found shoving handfuls of fruit into my face. I love “healthy” “natural” food. But what I also need is food I can eat and food I can afford. 

An awful lot of vegan food that goes down the healthy lifestyle route just doesn’t tick those boxes. When I am that exhausted or have brain fog issues I can’t be checking ingredients to make sure something non-vegan or something that sets of my IBS isn’t in there – and yes many common health foods are super incompatible with IBS, which is a common component of CFS/ME and EDS. I don’t have energy to stand dithering at a counter figuring out which superfood salad really hits the spot. I don’t have the energy to go around a supermarket looking for different items. Sometimes it’s because the things I need in order to be healthy are things over looked in so-called healthy food (and I promise not to derail into an entire other article about notions of “healthy” food) and that is that carbohydrates, some fats and protein, the big easy things, are really important to a person’s diet and are often especially important to somebody with a chronic health condition who just needs fuel. Vitamin B12 is essential to body function and something I need to be mindful of on a vegan diet. But it doesn’t matter how much B12 I get if I don’t get the required number of calories, grams of carbohydrate and protein into my body to just keep me upright.

On top of that I don’t have a lot of money. If I want to do things like get my hair dyed at a salon I budget for it carefully (including taxis when I remember them) and that means I can’t be spending a fortune on eating out every time I get hungry (and no I can’t carry packed lunches everywhere, that gets heavy and energy sapping fast).

Sometimes I just want easy tasty food that I don’t have to think too hard about and that I can afford.

Sometimes I just need easy tasty food that I don’t have to think too hard about and that I can afford.

I am not going to Greggs because I want nutritionally balanced fancy food. I am going there because it fills a particular niche in daytime food whether you are vegan or not. So for everybody suggesting that Greggs start doing a butternut squash and spinach pastie, whilst yes that does sound lovely, will you kindly shut up. Go and get that somewhere else. You can I assure you find that somewhere else. What I want is a vegan corned beef slice. Or a vegan cheese and onion roll (this is a flagrant lie, I’ve never liked cheese and onion rolls and onion triggers my IBS). Or a vegan steak bake. Now there’s choice. Things so simple the ingredients are in their name. Things so simple you can get it and a drink and have change out of a fiver.

You may be thinking “well if you are disabled and have such difficulty finding food then maybe you shouldn’t be vegan?” or even “Well if you haven’t got much money then you shouldn’t be fussy about your food?”.

I’m just going to give you a few moments to really think about what you are saying there.

Let me tell you how those things sound to me: when you say somebody who is disabled, chronically ill or poor shouldn’t be vegan you are telling me that somebody who is disabled, chronically ill or poor shouldn’t be allowed to have their own ethics, morals or beliefs. I don’t care if you agree with my beliefs or not, but I am very, very concerned that you would think that a person’s right to their own thoughts, their own beliefs and ethics should be governed by their physical ability or health and their financial status. Every single person in this country is by law guaranteed the right to have their own ethics and beliefs and to act on them as long as they don’t cause harm to anybody else. If my beliefs are that I don’t eat animal products then I should have the right to do so even if I am ill, disabled or poor. Because on top of that right to hold ethics there is also the human right that I or anybody else should not be discriminated against due to disability or socioeconomic status. If non-disabled people can choose to eat an animal free diet then why do you believe that somebody who is disabled does not have that right?

If you have the energy to get “higher quality” food or to look for something more nutritionally complete or with fresher ingredients. Great, you do that. And on my good days I’ll be right there with you enjoying some delicious delicious greens. But on my bad days if that’s all that’s on offer I won’t be by your side. I’ll be on the floor crying because my legs don’t move any more.

To insist that all vegan food should be healthy, natural and conform to a certain narrow view of what vegan food should look like is classist and disableist. To level that criticism at other vegans, to tell them they are “doing it wrong” or aren’t “proper vegans” or should be in some way ashamed for wanting a mass produced cheap baked good is classist and disableist and you need to stop. You eat what you want, and let me eat my dream vegan corned beef slice before I pass out.

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Me Vs My Disability

Many people who are disabled have to walk a fine line controlling other people’s perception of them: the line between looking vulnerable and not yourself and appearing “not disabled enough”.

The way our society treats disable people erases their identity and turns individuals into a single homogeneous being of “The Disabled”. We are stripped of what makes us us and instead represented by walking sticks blue badges wheelchair pictographs and infernal aluminium and grey plastic.

“You don’t look disabled!” and “But you don’t look sick!” are stock phrases that every disabled person will be tired of hearing. The phrase is usually offered one of two ways: disbelief and judgement or an attempt at a compliment.

When offered as a compliment it is to say “you don’t look how I think a disabled person looks” or “you don’t look pathetic or weak”. This is part of erasing our identity and assuming that all disabled and chronically ill people fit into a single mould. It also assumes that the goal and the ideal is for the person to not be disabled and so be successfully looking “not disabled” we are achieving success. It also ignores the fact that regardless of how we look we are still disabled, we have gone to great effort to look our best but that doesn’t mean we negate our disability.

When the phrases are said with animosity or judgement they fuel discrimination. The implication is usually that in claiming disability status, and especially in making use of any support or assistance, we are lying, faking or acting fraudulently. Again this comes from a place of not conforming to views of what a disabled person should look like or how they should act. It also ignores the fact that you are often only seeing disabled or chronically ill people on good days, not on the bad days or at times when their disability limits interaction: if a disabled person can’t every make it into a pub with poor accessibility some people may draw the conclusion that disabled people don’t go to the pub. That is to say, enjoying a pint with their friends doesn’t fit the picture of disability which has been created in their minds.

photograph showing a person from the waist up wearing dungarees and a black t-shirt, they have grey lipstick, glasses and green hair. They have tube bandages on both elbows. credit Chiara MacCall

The impact of this can be devastating from verbal and physical discrimination and abuse, an unwillingness to improve accessibility to place out of a belief that disabled people won’t use certain facilities, to privation when benefits aren’t awarded or long term health issues and even fatality if medical treatment is denied.

One of the often unspoken casualties of this attack on how disabled people should look and behave is the mental health and well-being of a disabled person. When you are reduced only to one aspect of your life, and that aspect is often difficult and unpleasant or comes with negative associations, it can wear away at a person’s sense of self, their confidence and self worth. Additionally being constantly questioned and doubted as to the validity of their experience can cause guilt, confusion, stress and paranoia. The mental health cost of the general public not really seeing disabled people as people is massive.

Photograph of a person from the waist down. They are seated and are wearing blue short dungarees over a black t-shirt. They have black skeleton print knee socks on, camo-print K-Tape on their left knee, tube grips on their elbows and support gloves on. Their hands resting on a walking stick. credit Chiara MacCall

However there is a balance to be struck. If we see only the individual and erase their disability, we may create more inequality by not addressing the access and care needs of disabled people. If we see only the disability we erase their identity along with any other characteristics and difficulties they may face (because a disabled person may also be a black person, a Muslim, gay, trans, poor or other minority characteristics).

I have writtenpreviously about being seen as a vulnerable adult. This continues to be an issue especially following a recent burglary that has left me very aware that I am to many people who see me a vulnerable person. To those who only see the disability I am an easy target (if their minds lead to nefarious activity any way). That’s a very difficult position to find yourself in. I don’t want to be viewed as nothing more than an equation that disabled = vulnerable yet I must face the fact that not only are there people who view me this way but that they aren’t entirely incorrect.

What could I do really if there was an intruder in my house, especially on a bad day where I was struggling with fatigue or pain. Could I fight back if attacked? Could I defend myself and my house. The answer is, probably no. Despite the fact that I have, prior to my disability, years of martial arts training is inconsequential. It doesn’t matter that for somebody with my health conditions I am relatively strong. The majority of time I am a vulnerable adult and I know that anybody seeing me in the street or, gods forbid watching me exit and enter my house with my walking stick, could conclude that I am an easy target.

Understandably this is a very difficult concept to deal with. Nobody likes to think of themselves as a target or feel unsafe in their own home. But worse than that it strips me of my identity and personality. It reduces me to that concept of disabled and nothing more.

photograph that is blurred showing motion. A person is walking away from the camera wearing a backpack and using their walking stick. Credit Chiara MacCall

But I am more than that. And I want non-disabled people to know that. I want non-disabled people to start to look beyond the sticks and chairs and hearing aids and to see real people and to understand that if somebody saying they are disabled even if you can’t see any obvious indicators, even if they don’t fit the traditional narrative of what disability looks like, that maybe they are disabled and maybe there is more to them than that disability. Being disabled does not erase my gender or my sexuality. It does not erase that I like heavy and eclectic music. It does not erase the fact that I love art and books and food. It doesn’t erase that I enjoy being active and singing and horses. It doesn’t erase my political opinions or activism.

photograph showing an arm stretching up toward the sky with a crane behind it. The arm is hyperextended and the elbow is at an unusal angle and covered by a tube bandage. The fingers are splayed wide. Credit Chiara MacCall

More than that those many things and more that make up who I am do not in any way make me less disabled, cure my disability, make me a liar, make me a faker, erase my disability or my experience as a disabled person.

That’s what the photographs illustrating this article are all about. They are a collaboration with documentary photographer Chiara MacCall who uses her lens to show who people really are and who has a great talent for showing what is beneath the surface of her subjects. I spent a day in London with Chiara being disabled and being me. We ate good food, talked politics and social justice, looked at art both in galleries and on the street and talked about what it was that made us who we are. I was not “born disabled”. I gained my disability in my late 20s. It has taken a long time for me to accept that this is a part of who I am, that it can be a part of who I am without erasing my personality, identity and the sum of the experiences I had had up until that point. Just as taking a dance class when I was 7 shaped who I am today, so did becoming disabled when I was 27.

My self identity does not invalidate my disability and my disability does not invalidate me.

Photograph showing a person wearing dungarees a black t-shirt, black skeleton print socks with various joint supports and a walking stick stood in front of a large piece of street art showing an orange skinned femme figure covered in flowers. cred Chiara MacCall

Open letter to the Trades Club about accessibility

An open letter to The Trades Club in Hebden Bridge following my visit there. This was sent on 17th December. I waited for a response from them and include any response from them below. There is further comment and thoughts at the bottom of the post. 

To you all,

Apologies for contacting via facebook, I was unable to find a contact email address.

I made my first visit to The Trades Club on Friday 14^th of December. Knowing the reputation of the place as inclusive and socially liberal I was looking forward to my visit. Sadly that excitement was soon quashed when I realised there was one group of people you are not inclusive for and discriminate against: disabled people. I am fortunate that I can manage stairs, but due to my disability it is not without pain and difficulty. There are many others who simply wouldn’t have made it passed the front door. Understandably considering there is no step free access, no accommodations have been made for wheelchair access such as wide aisles for getting through the main hall or adequate seating options in the bar. However these accommodations don’t just benefit wheelchair uses but help people with other disabilities including mobility issues.

You have no accessibility statement on your website. No accessible toilet (which isn’t just a matter of allowing a wheelchair in). No notices about hearing loops, lighting, seating or signing.

There are no accommodations what so ever for disabled people. As a minority group we have been forgotten or dismissed as not worth a thought or the time and money. Without even an accessibility statement on your website there isn’t even an indication that accessibility for disabled people has been considered at all.

What particularly makes this a sore issue, apart from people not even being able to get into the venue, are your multiple statements and posters stating that you are an inclusive venue. You promote acceptance and outlaw discrimination based on race, gender, sexuality and ethnicity. This is wonderful. I am included in more than one of those minority groups and appreciate that sentiment. But it is a bitter pill to swallow when you continue to discriminate against disabled people and I was lucky to get into the venue at all.

I understand the building is difficult. I understand you are not a big corporation with plenty of financial backing. But I don’t believe that is an excuse. How you choose to spend your budget, what you choose to say, what modifications to the building you do and don’t make are choices. I don’t expect every business and building to be a flagship of accessibility, but I do expect that groups which espouse inclusivity, acceptance and equality to make choices that do not discriminate against disabled people.

I am disappointed.

I am let down.

I am unlikely to visit again unless changes are made.

As is my standard practice I will be posting this as an open letter on my blog Axes n Yarn in one week’s time. I will include any reply I have received from you. I do this because disableism is an issue that needs to talked about and because disabled people as a minority group need their voices to be heard.

Though this is a personal email based on personal experience I should also disclose that I work freelance as an accessibility consultant and advisor via my website www.Accesscheck.net

Yours sincerely.

Robin Tynan

Their response on facebook on the 17th of December:

Hi Robin - thanks for your email. I can assure you, making the Trades Club accessable for all is at the top of our priorities. Will elaborate on email, of course. Best wishes Mal Campbell [email address redacted]

I gave them my email address so they could contact me there. I then received the following email on December 18th

Thanks for forwarding your email address. The Trades Club secretary, Michael Coneys, will be back with a response shortly.

Final Thoughts

As of writing this blog on 31/01/2018 I have had not further contact from The Trades Club. My original letter said I would publish this post a week after sending, but due to various factors I've left it until now - roughly two weeks. I appreciate that during that period it has been Christmas and the associated public holidays. However, I should note that The Trades Club has been open during this period.

I think my concerns and feelings on the subject are clear from the letter I sent to them. I am of course not pleased with their lack of response. It does not leave me feeling assured that accessibility is a top priority. It is difficult to believe that accessibility and ending discrimination toward disabled people is a priority when a business has no mention of accessibility or disability on their website or any of their public information. It is difficult to accept that accessibility is a priority when a business has been open for over 35 years and no modifications or adaptations have been made, save for a single line of small print text stating that they are not accessible on their website.

I am of course disappointed at the lack of response from the Trades Club. Though it has many qualities to recommend it, I am somewhat soured by this experience and even if accessibility weren't an issue (there are some days when I wouldn't make it past their front door) I would be hesitant to support them in the future. I honestly feel that any venue or business that claims to be inclusive and welcoming of all minorities and yet fails to address the barriers which are excluding a group of people is disingenuous and needs to examine their ethics closely.

Should I receive any further correspondence from The Trades Club I will post an update.

UPDATE 08/01/19

I received the following email on 07/01/19. I haven't replied as I am not sure if a reply is necessary at this point. I may follow up their offer to telephone to talk over various points but will be doing so in a professional capacity as Access:Check. I am accepting of their apology and acknowledgement of problems. I continue to dislike, from any group, passing blame on to landlords. That is not because I believe the landlords are without fault, but because I believe there is a shared responsibility between tenants and landlords to address structural accessibility concerns, especially in long term leases.

Hi, Robin,
Mal passed on your comments regarding the Trades Club.
Firstly, could I apologise for the delay in responding and secondly,
for the Clubs shortcomings.We fully acknowledge your critical
comments.
While major structural changes are in the hands of our landlord ,(plans have been drawn up to link the lower and upper floor ),
there can be no excuse on our behalf for the lack of information
on the website . Clearly,we will set about trying to implement many of your suggestions.
In the meantime if you wish to discuss this in more detail, please
feel free to contact me. [redacted]
Kind Regards ,
Michael Coneys, Secretary ,The Trades Club

Sunday Short - Can't we have pretty things?

So I need a new shower stool right. But I have this thing where I loathe things commonly sold as "shower stools" in the UK. They are so often aluminium and white or grey plastic. At first I thought this was some sort of internalised disableism, and in part it may be, but it's actually mostly something else.

The grey plastic and aluminium is very institutional, very medicalised. It is reminiscent of, in-fact often the same items as, those used in hospitals.

And I hate being pathologised like that. I hate being reduced to a disability and being classified as a medical problem.

Just because I have a chronic illness, just because I am disabled does not mean that I shouldn't be allowed to have personal preferences or style. 

photograph showing shower stools and adaptive devices made of aluminium and grey and white plastic.

This is just a part of the wider problem of how disabled people are treated in the UK. It is a symptom of “othering” and of creating an “us” and “them”. Disabled people are the “them” of society, segregated and kept in place, identified and marked out by their aluminium and grey. These hospital style contraptions are the modern black triangle patches*.

Only when we start recognising that disabled people are, shockingly I know, people who are individuals with their own lives and interests that have nothing to do with their health will we start to break down the barriers between “us” and “them”.

And in the mean time I have to deal with the fact that something as basic as a wooden shower stool is seen as a luxury item costing £50 and up: my choices are to buy something cheap and not fit for purpose or a sturdy but ugly and medical styled aluminium stool.

*Disabled people were designated with black triangle patches in Nazi Germany as part of the asocial group. However some modern disability rights groups are reclaiming the symbol for their campaigns.

Reconsidering the "Walkable City"

Based on previous posts (and chatter on facebook if you follow me there) you may be aware that I am interested in the concept of solarpunk and future cities. For those not initiated to the idea of solarpunk it is the concept of a better society that is built using modern (or future) science and is harmonious with the environment and with the people who live in it. If you read my post on Wakanda you will know my delight about a city that is not only environmentally sound, scientifically advanced but also people friendly and accessible and that’s a big deal.

The concept of walkable cities then, surely that fits into my solar punk future science ideal? Well yes and no. A recent article from the Guardian inadvertently provides the perfect example of this. The article itself is well written and well sourced with examples of a number of cities and studies but really the first indication of an issue is the title “a walkable city”. This name itself discounts large proportions of the population who can’t walk at all or easily. You could argue that the title isn’t specific but instead is referring to a concept. However the wording, as innocent it may be, directs people’s thoughts to walking and overlooking those that can’t walk.

A walkable city isn’t always about places being totally pedestrianised but the aim is for pedestrians to take priority and to be safe navigating on foot. The benefits are undoubted - lower levels of pollution, less collisions and accidents, better footfall and sales especially for small businesses. These are undoubtedly good things as is encouraging those who are able to to walk a little more to get more fresh air and be more active. But a potential benefit that is ignored is allowing disabled people to be more independent as well.

The article cites a number of cities and projects and the approaches they have taken. In London they have been using cameras and software to track the movement of cars, pedestrians and cyclists in order to determine the most efficient routes and road layouts to encourage more pedestrians. In Auckland the council have taken steps to make areas more “pedestrian friendly” by adding more trees and benches and removing car parking. Greater Manchester are creating “beelines” a joined up system of paths and cycle routes across their city to aid people walking from place to place and reducing the reliance on cars.

What is missing from all of these projects are considerations or even an acknowledgement of disabled people and the needs they may have or how their experiences may impact what counts as a “walkable” city.

Tracking footfall, bicycles and cars is a useful and important project and will certainly provide important information, however it only leads to an accessible city if those various pathways are wide enough for pedestrians and power chair or mobility scooter users. Trees and benches are great, especially providing seating for those who fatigue easily, but they must be placed in such a way that they don’t provide impediments to those who are blind or partially cited, and leave room for walking and chair based pedestrians alike to use the paths concurrently. Likewise for cycle and footpaths that span cities.

Creating pedestrian zones that allow easy walking is a wonderful idea but we also must recognise that walking across a city centre, even a walk of only a few hundred yards is impossible for some people. There still needs to be adequate disabled parking - and for there to be a cultural shift which doesn’t restrict them to only those who have been granted a Blue Badge (Blue Badges are often awarded based on your PIP award, since not everybody is awarded PIP no matter how high the need, this means people who need the badges may not have them).

But it goes even beyond that. According to some metrics York would be considered a “walkable city” by many. Much of the city centre is pedestrianised with limited traffic flow and priority given to pedestrians. This encourages a high percentage of thriving independent businesses. Anybody with mobility or other access issues would be quick to point out though, that it is most definitely not an accessible city. The streets are narrow and crowded, they are winding and uneven: a mix of narrow kerbs, cobbles, paving stones, sign-posts, bike racks and more. Getting around on foot with mobility issues is difficult: getting around in a chair is prohibitive. That’s even without addressing things like noise and visibility or the additional barrier of steps into buildings. A walkable city is not an accessible city and it’s very easy to end up with one at the cost of the other.

What frustrates me most about this article is how many of the project authors have been keen to consider inclusivity, for example Action Aid’s app and program to allow people to document streets and buildings they feel safe or unsafe in (and then hopefully passing that on to organisations that can make improvements). It quotes Susan Claris of Arup as saying “[a] huge indicator of a civilised walkable city” is safe public toilets. Clearly some thought and care is going into these studies. But what of people who don’t have access to a public toilet at all, safe or otherwise? Of the many public facilities across the UK (including over 4000 council run toilets) only a fraction of those are labelled accessible, fewer still are actually accessible (it’s not accessible if it’s also your storeroom) and even less are rated by Changing Spaces as suitable for an adult who needs a carer. In these pedestrianised walkable cities in which people aren’t able to dive into their car and speed home if caught short accessible toilets absolutely should be a priority.

Even worse in my eyes is that the article cites the “double buggy” test, being used by the Manchester project to determine if paths are wide enough that somebody could get a double pram down. That is important: parents and pushchairs should be thought about (and let’s not forget many of those parents may be disabled in someway themselves - using a double buggy instead of carrying a child may even be an accessibility adaptation for them) and it inadvertently helps disabled people - if a double buggy can get through so can the majority of mobility scooters, manual and power chairs. But nobody likes being an inadvertent afterthought, or in this case possibly not even an afterthought since we aren’t afforded the column inches by the journalist. It is significant because it would imply that the needs of disabled people aren’t being considered in these plans at all. If a double buggy can get down a path then yes a chair can too. But whereas a parent may be able to push a chair up or down a kerb, and over uneven surfaces or around awkwardly placed signs, a person in a power chair may not be able to and that’s just not a concern for these project builders.

Disabled people already struggle with getting out and about. But their absence from everyday public view on the streets of our cities isn’t because we don’t want to be there, it’s because of the barriers architects, councils, town planners and engineers have put in our way. The reason so many visionaries of future cities seem to have forgotten about us is because we are already kept out of site and out of mind by the societies we live in. Creating a fresh new walkable city or a city of the future is an admirable goal but if you look at your artists impressions and computer simulations and all you see are non-disabled people then you’ve gone wrong. You have neglected and discriminated against a large group of people who have every right to enjoy the businesses, places of work and attractions of a city with the same ease, safety and comfort as any other citizen disabled or not. That shouldn’t be forgotten about and it shouldn’t be reduced to an afterthought.

Truly revolutionary design and development comes by considering all the people who will be using your creation. Truly functional design that stands the test of time is something that can be embraced by the whole population and is fit for purpose, avoiding the need for decades of patching and re-engineering. That absolutely means considering the needs of everybody including disabled people.

So what of my shiny solarpunk dream cities? Would they be “walkable”? No. They would be accessible. Accessible to all who need to be there. For many that will mean safe and easy walking for others that will mean spaces and access routes for personal vehicles (electric and self driving of course, this is my dream after all). Streets that can be navigated with ease, clear road signs with braille or audio that can be picked up by a user’s app. Plenty of seating, and yes, good clean accessible toilets. Designated cycle lanes that don’t encroach on pedestrian space. Charging points for electric chairs and scooters. Smooth surfaces and ramps between different levels. Good lighting (reactive for energy efficiency and to reduce light pollution). Options and services for those people who need help carrying things (drones maybe?). Good public transport with easy access points and methods for getting into the centre of “pedestrian” spaces.

Yes some of these are out of our reach right now but many of them aren’t are are what I would think of as basic and minimal changes to a city to make it both accessible and pedestrian friendly. If the money can be spent on these existing projects then it can be spent on improving accessibility.

I don’t want to see any more think pieces on walkable cities. I want to see think pieces on accessible and inclusive cities. I don’t want to be erased from a future that hasn’t happened yet.

Amazingly, the Guardian has written on this subject themselves with an article called "What would a truly accessible city look like" from February 2018. They just must have forgotten about it. 

RPG and podcasts and diversity!

Several month ago I played in a short one off RPG game called Unfamiliar Heroes - a homebrew RPG system written by Fay Onyx of podcast and blog Written Alchemy. Fay focuses on creating stories fantasy and games with greater diversity. Zer skill isn't just in putting in different faces when it comes to describing characters but considering how their individual differences may impact and help shape those stories. Our game of Unfamiliar Heroes, with Fay GMing, brought together three players with disabilities, chronic illness or neurodivergance. Additionally we created characters that had their own disabilities or access needs and these played an important role in the story. We were encouraged to consider not just what issues the characters may face but how in this magical fantasy world we might manage those issues without erasing them.

The game has been split into several episodes, the first of which are already up, introducing the characters. You can find the series at Written Alchemy, and my episode introducing Taragon Songsteel the orc bard is here.

Our adventure was dubbed The Owlbear Reintroduction Program

ink sketch of an Owlbear 

I also had a part in a short play for the podcast Monsters Out Of The Closet. MOOTC bills itself as a LGBT+ horror fiction podcast and that sums it up pretty well. Each episode has a loose theme with one or two short performances of horror fiction. There is a consistent thread of LGBT+ representation throughout the series be it in plot or characters.
I appeared in Episode 7 - Haunt in the piece Lossless by Taara Rangan.

It was a new experience for me and something I hope I get the chance to repeat!

Sunday Short: Running the gauntlet of a benefits appeal

Screen shot of a tumblr post. Transcript below.

Transcript:
[theconcealedweapon] Some people can lift 200 pounds. But if they carries it everywhere they want for an entire day without ever putting is down, they'd severely tear their muscles and cause permanent damage to their body.
Some people can enter a 140F car in the summer to get something out of the car. But if they stayed in the car, they'd die from the heat.
Some people can hold their breath underwater for 30 second. But if they tried to go scuba diving without the necessary gear, they'd drown.
Clearly, someone doing for a short period of time does not automatically mean that they can do it indefinitely with no problem.
So why do people assume that if someone can walk for a few seconds, they don't need a wheelchair?

[filthybaguette] HOOOOOOO SHIT THERE'S THE TRUTH

[Skeletonmug] THIS THIS THIS

it goes further that wheelchair users too.

It's a very important issue with people who can't work "normal" jobs due to chronic pain and chronic fatigue.
Sure I can go to a friend's house and talk and maybe play a board game for few hours. But a) I'm not doing that without incurring pain and fatigue and b) that is not the same level of exertion as working even a part time job.
Sure I can write a blog posts  some weeks but I still incur pain and fatigue and I can't do it everyday. It's not the same as working even a part time office job.
Sure I can walk to the shop and back using mm [sic] cane but I can't do it at any given time without notice and I end up with increased pain and fatigue. This is not the same as being able to walk anywhere I want whenever I want.
You, dear judgemental and biased assessor, could walk the length of Hadrian's wall in 5 days*, but lemme tell you, even if you have trained for it and even if you are fit and healthy, you will be exhausted and in pain by the end of it. But you can do it. So from that I can of course extrapolate that you can walk 84miles up and down literal mountains all the time whenever you want, one after another with no rest and of course you'll be fine and the pain and fatigue will be trivial and [not] eventually prohibitive?
No? Then you can't decide that because I can walk to the shops and back using my stick and incurring pain and fatigue that that means I am fit to work a regular job or have zero mobility issues.
*I have actually done this before I got stick. It was way tougher than I thought. 

This is a fairly old post now but it popped up again today and it couldn't be better timed.

This post is going to be unusually candid and personal but I think it's important to share my experience with applying for PIP (Personal Independence Payment).

The quick rundown of the timeline is as follows:

• October 2016 - receive a letter from the Department of Work and Pensions stating that I will be being moved from my Disability Living Allowance on to PIP and need to apply for PIP by November 2016.
• November 2016 - Face to Face assessment with DWP assessor
• December 2016 - receive a letter from the DWP saying that I have been awarded the standard rate for mobility at £21.61. This is over a 75% decrease in what I was receiving in DLA and a demotion in grade.
• December 2017 - Request documents so I can submit what is known as a "mandatory reconsideration".
• January 2017 - Date for mandatory reconsideration passes without me receiving the requested paperwork. 
• January 2017 - finally receive paperwork
• February 2017 - Submit mandatory reconsideration 
• February 2017 - Receive refusal of mandatory reconsideration.
• March 2017 - Submit formal request for appeal and tribunal
• February 2018 - Receive letter with date of tribunal and option for submitting supplemental information. 
• April 2018 - Appeals Tribunal held. Decision given. Awarded an increase to include Standard Rate Care. This is a 100% increase from the original award.

The reason this is being paired with the above tumblr post is that so much of the application, assessment, reconsideration and tribunal is about repeatedly reminding and convincing complete strangers that being able to do one thing does not mean that I can do everything all the time.

There is a key phrase in the guidance and scoring criteria for PIP and other disability related benefits: "reasonably, reliably and repeatedly".
What this basically means is can you do it with reasonable levels of pain, discomfort or distress, no more than an able bodied person would be expected to endure; that they can be expected to reliably perform the task in an expected manner; that they can repeat the task in a reasonable time frame.

Despite this being specifically in the guidance for PIP applicants, it seems that any assessors and professionals involved in decision making don't keep this in mind or have a poor understanding of what it actually means. There is also a tendency for people to think in very discrete terms and not consider that doing thing A will also have an impact on your ability to do things B,C and D. It's not just about doing thing A again and again.
On top of that it's recognising that things A, B, C, and D may have different stresses on the system or difficulties associated with them. Sometimes it helps to think about it as a game of Tetris with really big awkwardly shaped blocks. Each day you may only be able to fit in one big awkward shaped block. Or you can fit a B block and a C block but that's it, not other. Of course you also need to consider the long term impact of activities or situations. Symptoms don't stop and our bodies don't resent at midnight ready for a fresh day.

This is why my PIP appeal was brutal. Because I have to repeatedly, with every activity, from cooking a simple meal to walking to a bus stop remind them that even if I can do it once I can't do it again and again. Even if I said I can start cooking a meal, I can't necessarily finish cooking a meal or do anything after cooking a meal.
Additionally if it can only be done with pain, fatigue, distress, or confusion then it is not being done in a reasonable fashion.
Even communication. Yes I might be communicating with you now but can I do it reasonably, reliably and repeatedly.

It is ridiculously exhausting to have to do this again and again. It's not just the frustration of repeating oneself, it is the pain and distress of having to justify your experience to people who are absolutely failing to grasp what you are telling them.

Disabled and chronically ill people really need able bodied people to actually consider and appreciate the ease with which they do things every day and how that is not the experience of disabled people. More than that we need able bodied people to listen to disabled people and respect and understand that we are not exaggerating. We are trying to be as open and frank about our experiences as we can. It we say we can't do something it's because we can't. It doesn't matter if we did it yesterday or we did something that you judge to be similar. If we say we can't do it or we can not do it reasonably, reliably and repeatedly then we can't.

If more people understood this then people wouldn't have to go through 16 months of intrusive, distressing and at times physically and mentally demanding scrutiny.

Sunday Short - Non Specific Accessibility Aids

This post first appeared on Tumblr earlier this week. I was initially hesitant about posting this because that would be three disability Sunday Shorts in a row. But I decided to go for it because it's an important topic

For ridiculous reasons I have been without a mobile phone for two months now which is infuriating.

I haven’t been able to afford to buy a replacement and I have lived in hope that the place I sent it to get fixed would actually return it. That’s a whole other story though.

The thing I don’t think people realise is actually how disabling this is for some people. I know there are all sorts of stereotypes and prejudice about The Youth and Their Addiction to Screens which largely is bullshit. The truth of the matter is that for modern life, especially for people brought up with the tech, smart phones are incredibly useful. They can keep you in touch with people, you can conduct web searches, you can easily check your bank balance when you are out, you can check Google Maps for directions, use it as a train ticket and so so much more.

For pretty much anybody of any age ho uses a smart phone regularly, being without one for a protracted period of time is an inconvenience at best. We can’t deny how useful they are.

But I want you to consider that usefulness and expand it a bit further.

I want you to consider it as an accessibility aid for disabled people.

Consider somebody who has sevee anxiety or autism and who struggles being out, especially in busy places. Their smart phone has apps that can help to calm or distract them, it has music, audiobooks, meditations or white noise to drown out or distract from excessive stimuli. It can help communication if you struggle talking to other or can bypass stressful communication altogether for example by giving you directions instead of having to ask a stranger. Most importantly for many it can allow you to contact somebody you know and trust either to come and pick you up/help you or just to keep you calm and centred while you manage yourself.

Consider the person with ME who gets struck with excess fatigue or pain while out. They can use their phone to look for the closest taxi rank, bus stop or to order a taxi because they cant walk anymore and aren’t safe to drive. They can use apps or google street vie and similar to find the nearest bench to sit. They can use their phone to communicate to people f the fatigue effects their speech. They can use apps to check when they last took meds and when it’s safe to take another dose. Again, they can call for support, help and guidance when they are so exhausted they can’t think clearly.

Consider the person who is partially sighted who can use apps to magnify text on labels and packages or to read out loud signs. They can have spoken directions to navigate a busy town centre. They can use the bus services app to get a ticket so they don’t have to try and see the coins and ticket machine when travelling.

There are so many different ways a smart phone can help disabled people access the world around them. They are useful for pretty much everybody but they can be the thing that makes the world actually accessible to others. But a smart phone isn’t considered an access aid. You’ll never get government funding for a smart phone no matter how useful it is to a person.

There are so many other everyday objects I could have used as an example - a hand blender, a microwave, a laptop or tablet, a “fancy” one cup kettle- but also a pre booked seat on a train, first class on a plane (for the leg room amongst other things), taxis, specific housing.

We have to stop seeing access aids as medical devices that are prescribed and start recognising that what might be a convenience to you, an able bodied person is actually a major help to a disabled person. We need to do this to reduce disableism, increase accessibility and to realise that things like being without a phone isn’t always just a minor annoyance.

This is what is often called a “disability tax” - the extra costs that disabled people need to pay in order to have normal access and a normal standard of living. What is a non-essential item or a perk to an able bodied person is virtually a necessity to a disabled person.

Sunday Short - this is systemic disableism

This post first appeared on facebook on 24/03/18

This was inspired by the HuffPost article BBC Journalist Criticises Heathrow Airport's Treatment of Disabled Passengers

pic.twitter.com/LBJlAXE7GN

— Frank Gardner (@FrankRGardner) 24 March 2018

This is what we mean by systemic disableism. Having guidelines or systems or accessibility features is all well and good but they have to work. You have to be able to use them smoothly and effectively. If they are an afterthought, addition, or hidden away in the back of a training folder they aren't actually accommodations.

You need to think about accessibility right from the beginning and have accommodations for disabled people as seamless a feature as any service you offer to literally any other customer. If you are designing services or features for your customers you have to include all you customers able bodied and disabled right from the start because if you don't the chances are your accommodations won't actually accommodate. A disabled customer, client, or service user is no lesser than any other customer. They are not a subclass, or different species. They are people who should be valued equally with your able bodied customers. And that means you don't lose a wheelchair.

You can read more about my thoughts on this issue along with more examples in this article: Your Accessibility Needs to Be Accessible

If you like what I write and want to leave a tip you can do so at ko-fi.com/axesnyarn

Laptop Fund

My laptop is on its last legs. It has recurring power issues, is starting to crash more frequently and is doing some weird stuff. Though I have an old back up laptop it is old and has its own problems and doesn't run some of the programs I need. I am disabled and often stuck at home: my laptop is what keeps me connected to the world. I use it to talk to friends and family, see what is going on in the world and to learn.

More than that it's what I use to write for my blog Axes'n'Yarn and to run access:LARP. I have a very very small income through access:LARP but without the laptop I couldn't even earn that! Any contributions to my new laptop fund (or let's be honest, a refurbished laptop fund) are greatly appreciated as I am not sure how I can afford a new one right now and I am scared of loosing my connection to the world. I'm not aiming for a super fancy high end gaming laptop, my needs are fairly modest. I just need something that works, actually charges and keeps me connected.

Sunday Short - Being Disruptive is Necassary

Sunday Shorts will be brief blog posts often drawn from things i have posted on other media such as facebook or tumblr.

Screen shot of a tumblr post - an anonymous question to user beeth0ven and their reply. Transcript below.

Transcript:

anonymous asked:
I def get the cripple punk movement and on the other hand the entire thing is a little to Malcolm X and not enough MArtin Luther for me.

beeth0ven answered:
mlk is so often misquoted and taken out of conext by white people. MLK wasnt just "we are equal lets be peaceful" guy - knew that the apathetic white was the biggst danger of all, he knew capitalism was an evil. he said plenty of things they don't teach you in school.
You also act like malcolm x was wrong in some way. this movement isnt for you. it's not for able bodied people. sorry to hurt your feelings.

My response:

What you mean when you say this anon, is that you want to humour disabled people but not actually listen. You are happy to give people the opportunity to speak but not to make waves. You think it is sufficient for people to complain and say things suck but you are not prepared to make actual changes. You want to feel like an ally who supports disabled people but you don’t want to change the status quo or move out of your comfort zone.

Disabled people need real changes and they need real support. That’s going to shake you out of the status quo and it’s going to feel disruptive but that’s not a bad thing. That’s a positive thing because it is a sign of change.

You think the soil doesn’t get disrupted when a plant shoots? You think the plant is ad or amoral for growing?

You are the soil. We are the plants. We are growing and you will be disrupted. But it’s either that or you keep us suppressed underground.




Find me @skeletonmug on tumblr

If you like what I write consider leaving me a tip buy donating via ko-fi.com/axesnyarn

Cripple-Punk: when existing is rebellion

Cripple-punk, Chronic-punk, C-punk. Maybe you’ve seen these terms around, maybe you haven’t. But what do they mean?

[image description: a digital artwork depicting user ogrefairy - a fat  light-skinned wheelchair-user with a “The Future Is Accessible” crop top, surgery scars on her knees, reddish-purple lips, thin framed glasses, a dark brown bob cut, and a floral tattoo on her wrist. She is giving a peace sign and a gentle smile while sitting in a manual chair that has been decorated with purple and black zebra patterned tape. Matching forearm crutches sit behind her backrest. The background is Art Nouveau inspired abstract pale purple with a floral wreath of princess lilies and has flowers that match those on her tattoo. The whole image gives off a gentle, soft tone with layers of maybe assertive resilience built in.]

Cripple-punk can be described in a number of ways: a movement, an attitude, a lifestyle. It is all of these things. Tired of being pitied, portrayed as weak, incapable, lesser, and tired of being treated as fragile adult children disabled and chronically ill people are fighting back. Part of this fight is the reclamation of the word cripple once used derisively for those with mobility issues; it is now being said with a self aware pride by the very people it refers to. “Yes I am a cripple. What’s your point?”.

Of course not everybody identifies with the word cripple. For many it is still a word that carries social stigma and negativity, and for others it just doesn’t reflect their personal situation. So then the terms  Chronic-punk and C-Punk. From this point forward I will be using the term C-punk inclusive of both cripple- and chronic-punk.

Let’s turn briefly to the history of punk itself. Whether you believe that punk was spawned in the clubs of New York or the streets of London, what is clear to all is that punk was a reactionary movement. Punk developed as a reaction to and rejection of the orthodoxy. It was a rebellion against the sociopolitics of the mid 70s and 80s. It embraced anarchy, nihilism, dada, socialism and did so with an unbridled and shameless energy and aggression. It was a challenge to everybody to embrace individuality and push against normality.[1]

Since its initial inception as a subculture there have been numerous off-shoots, and further subdivisions such as hardcore punk, post punk and even pop punk that grew organically out of the original punk scene. Later, the term punk was used as a suffix for a number of sub-genres and cultures which were about subverting, challenging and changing the status quo of a given theme. Thus was born steam-punk (subversion of Victoriana), diesel-punk (mutations of the early 20^th century), cyberpunk (subversive sci-fi and near future), and more recently solar-punk (eco futurism) and afro-punk (referring both to the contribution of black people to alternative and activist movement AND to a variety of solar punk that is centred on African culture related to afrofuturism[2]). These subgenres are largely arts based, developing from literature in to art, music, lifestyle and “aesthetic”. [3]

[image description: a digital artwork depicting a black person with short black dreads on the top of their head that are died orange at the tips. They are wearing short gray shorts that show pockets and a white bikini top and white lipstick. She has artistic, white prosthetics on her left arm and leg that are decorated with orange day lilies. The background is pale blue with a floral wreath of orange day lilies. They are muscular and seem to be very confident.]

Now that we have a mutual understanding of punk, let’s think about C-punk. If punk is about rebellion, subverting the norm and individuality how does that apply to chronically ill and disabled people, after all people of all backgrounds can be disabled? While that’s correct there are common experiences shared by many people with disability and chronic illness. Disability is rarely seen in media and when it is it is often a feature of a storyline designed to generate sympathy or as a growing point for an able bodied character. When characters are disabled that is often the primary focus and the character is allowed little characterisation or identity other than their disability. This spills over in to everyday life for many people – people with disabilities and chronic illness are often forgotten about (as evidenced by many buildings and events not thinking about accessibility at all) or reduced to a stereotyped collection of their symptoms and abilities. In real life it is common for people to be ignored, talked down to or infantilised as if any single impairment is enough to strip a person of their faculties and individuality. There is a stereotype that disabled people are either meek and quiet, eternally grateful for the things they can do and any shred of recognition they can get or, alternatively, we are bitter and remorseful, struggling to cope with our limitations and desperately wishing we were able bodied. There seems to be some sort of shame or guilt from able bodied people that encourages them to hide disabled people behind the curtain, because they don’t know how to treat them. This is lodged in the idea that a disability or chronic illness makes us somehow “other” and reduces us to a small set of experiences specifically linked to our health. It forgets that even though disability or chronic illness may be a big part of our lives (and trust me I can spend hours talking about health symptoms and medical research) it is not the only part of our lives and really we are as diverse as any group of able bodied people.

These prevailing attitudes have created a culture in which people may be ashamed to use the very adaptations, aides, medication and devices that actually help to improve our quality of life. There is a certain amount of stigma attached to using a walking cane, or crutches. Being a young person wearing joint braces encourages questions from perfect strangers and should you reveal they are for a long term condition, pity or disbelief. People are scared to take medication especially for anything relating to mental health or neurodivergence, but also things like pain relievers for fear of looking “weak” or of “giving in”. [4] Additionally, due to our current socio-political situation (in the UK and US at least) there is a fear that if you reveal you are disabled or chronically ill then you are faking it for benefits, scamming the system or simply put lazy.

Conversely and somewhat surreally there is also the (thankfully shrinking trend) of photographers and film makers using the trappings of disability – such as wheelchairs, crutches, hospital beds, and mental health stereotypes – as a backdrop and props for their shoots and films when they want to appear “edgy”[5]. In fact medical paraphernalia has been a stalwart of shock and horror media since the 19^th Century, and shockingly the attitude and acceptance of this is only just beginning to change. Once again this “others” people who are actually disabled or chronically ill turning their daily lives into a boogie man or piece of set dressing. In some cases it may lead to people choosing (or being forced to in some cases) to hide their disabilities in order to avoid bullying, harassment and stigma.

C-Punk therefore encourages people who are actually disabled to embrace their disabilities and to show the true face of disability and chronic illness. If the social norm and status quo is to shame and hide and to strip disabled people of their individuality, then it is a punk act to wear a neck brace proudly, to decorate crutches, to be seen, to say “I am here, I am disabled, and I am just like you.” .

[image description: a group of five individuals of varying gender presentations. They are a variety of body sizes and are dressed in a mixture of styles. One individual is using crutches, one using a walking cane, one appears to be wearing wrist braces and a fourth is wearing headphones. The background is lilac with a wreath of pink and lilac orchid flowers. The title of the piece is "My MentallyIllPunk Famiy"]

It subverts the trend of humble gratuity to both accept and acknowledge ones illness but also to talk out about the difficulties we face. At its most simple C-punk is an aesthetic that does not hide or diminish disability and chronic illness and encourages acceptance or even pride rather than guilt or meekness. But for many it is more than that. It is a socio-political statement and a movement. As long as disabled people aren’t seen as individuals it is easy to dismiss and ignore their rights, ignoring accessibility laws, harassment, the stripping of benefits in a manner that the UN has seen fit to condemn[6]. By, in true punk fashion, making a scene, shouting out being seen and being heard cripple punk forces those who have previously brushed aside the reality of disabled people to view us as real people; real people just like them who may, just possibly be deserving of fair treatment.

In some cases the aesthetic of C-punk bears resemblance to the original punk looks: it is certainly popular with people like myself who are brightly haired and tattooed. But it is not the preserve of the alternative millennial (yes I am 32, yes I am a millennial, I was 15 in 2000) simply being openly, honestly and unapologetically disabled or chronically ill in public is an act of defiance and punk rebellion in our society. Not accepting shame, belittling, lesser treatment or discrimination is a radical and punk act.

Not all who confidently and unashamedly live their lives with disability or chronic illness will label themselves as C-punk and some may have never heard of the term(s). But in a world where existing as a minority is a radical act, they are acting in the spirit of C-punk just as much as those who bear the label. When you see somebody embodying the principles of C-punk, take note: realise that not giving in to outdated stereotypes and pressures is a choice and not always an easy one. We are not your inspiration but we are to be recognised.

All illustrations are by Ogrefairy at Ogrefairydoodles on Tumblr and are used with permission

[note: If you do experience shame, doubt, frustration and other negative feelings about your chronic illness or disability that's ok. It doesn't make you any lesser or any less C-Punk, at least in my eyes. A week does not pass by where I do not feel some frustration or inadequacy over my own health. You aren't alone, you still matter.]

---

[1] https://unireadinghistory.com/2013/09/04/punk-politics-and-youth-culture-1976-84/

[2] https://www.theguardian.com/culture/2015/dec/07/afrofuturism-black-identity-future-science-technology

[3] There are long debates to be had about how relevant the “punk” suffix is to a number of these subgenres and many arguments about the validity and actual definitions. That goes far beyond the scope of this particular blog post.

[4] See this great article on disability as “inspiration” in which a lot of value is placed on “overcoming” your personal difficulties, preferably without the aid of medication. https://www.abilities.com/community/inspirational.html

[5] http://www.kaltblut-magazine.com/editors-pick-elizaveta-porodina/

[6] http://www.independent.co.uk/news/uk/politics/government-spending-cuts-human-catastrophe-un-committee-rights-persons-with-disabilities-disabled-a7911556.html