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

Art Therapy and my mental health.

You have probably noticed that the blog has been quiet of late. There's two big reasons. Firstly over the Summer I crew Empire, a LARP run by Profound Decisions. I had played previously but this year I joined the crew team in GOD (Game Operations Desk) and I am so glad I made that decision. Due to my ME I struggled to get as much out of the game as I wanted as a player. Crewing is perfect. I actively enjoy helping other players and then time I get in character is stress free. However Crewing is very hard work and I end up utterly exhausted afterwards. It takes me about a week to be any sort of functional post game and three weeks or so to get back to my "normal" level of functionality which of course still has ME. When games are only six weeks apart and I have other things going on in between, that makes the summer a difficult time and far less productive that I would like. Obviously my ability to blog takes a hit.
The other iss ue has been my mental health and that's really what this blog post is about. I have suffered with mental health issues for the majority of my life. I first showed signs of depression and anxiety when I was about eight years old. I'm 33 now. At times in my life it has been terrible all consuming and even a dangerous illness. A lot of the time it is managed well.
I find it a little odd to talk about at times. I am very open about having mental health issues and always willing to talk about my experience and observations. At the same time I am a vey private and guarded person who doesn't share personal details. What this means is that I will often talk about my dealings with mental health is very general and abstract terms, and quite freely when I am doing well. However I very rarely talk to anybody at all about what I am experiencing directly, when I am experiencing it. I am very good at hiding it from people, not talking about it, glossing over and diverting conversations. An extraordinarily tiny number of people know what goes on inside my head, and an even smaller number know what's happening in real time. Now this isn't super healthy and I am getting better at opening up a little.
I have been working with a therapist over the past 9 months or so who has been tremendously helpful. I have also started doing DBT group work which is also proving helpful in learning how to manage particular events with my mental health.
Now, unsurprisingly I don't want to go into the ins and outs of exactly what is going on in my head, the triggers or causes. It's very personal and incredibly difficult for me to talk about. Part of my issues are caused by my hormones. I have a progestogen deficiency which causes something known as Pr-Menstrual Dysphoria. What this does is cause severe mental health issues including depression, mood swings and anxiety four about two weeks of every month linked to my hormonal cycle.  It is mostly controlled by using things like the progestogen implant but it doesn't cancel out the effects completely.
Additionally, even without that I would probably have depression and other mental health issues caused simply by the way my brain produced chemicals as well as due to events which happened in my past. I can't get away from them.
So I am working with a Dr to find the right dosage of progestogen to take (I will need tablets in addition to the implant) to manage the PMD and the therapist to understand and manage what goes on in my head.
It's actually pretty hard work and exhausting in itself. When it is going on at a time when I am physically exhausted due to events and my ME it can become even tougher.

So on to art therapy. I am not formally doing art therapy, but I do enjoy art and my therapist has come to udnersand that while I struggle immensely to talk about some of my issues I am able to paint and draw things to help explainw hat is going on. So I am encouraged to do so. It helps me and my therapist better understand the situation. Before moving on I want to just make a distinction about art therapy.
Sometimes people think that art therapy is things like colouring books, drawing or doodling as a soothing activity that forms a part of self care allowing people to feel calmer, more connected or centred. This isn't strictly art therapy, but is art as therapy and is subtly different. It's still very valuable but not quite the same. Art therapy on the other hand specifically uses artistic methods as a tool in helping patients to understand explore and communicate their thoughts and feelings. It can simultaneously be a therapeutic process but the focus is on using the art as a way of understanding or managing the mental health issues. Art Therapy is usually directed by a therapist and carried out with heir guidance with some sort of discussion about the art during or after the process of creating. The inclusion of a therapist is important as there are occasions when it can be a difficult or painful process to go through as the artist patient starts to encounter difficult or traumatic feelings.

For this reason what I have been doing sits somewhere on the fence between art therapy and art as therapy. It is specifically me trying to express and visualise some of the experiences I have with my mental health. They help me to understand them better and allow me to discuss and demonstrate to my therapist. However I am free to create them outside of therapy sessions and art itself is a soothing and therapeutic activity for me.

So the paintings themselves. I am sharing them with you because I would love to be more open about my experiences but I physically can not find the words to do so. My own brain won't let me tell you. But I can show you. I can let you see and hope you understand. More than that you might relate to some of the paintings and recognise what is going on. I have already shown these paintings individually on Instagram and have had a few people say that yes, they connect with that imagery.

Painting these has been a benefit to me. They will continue to be a benefit as we dissect them in therapy and as I look back on them and am able to take control of my brain by being able to visualise neatly what is happening.
I am still going to be a little cagey in describing each one. I hope the paintings speak for themselves.
If you do recognise or connect with any of them  then please feel free to leave a comment or if you would like you can email me.

Mental health 1 - Anxiety. fountain pen drawing with watercolours.
[image description: photograph of a large painting. There is a black ink sketch of a brain centre bottom and filling the rest of the sheet directed toward the brain are bold paint stroked of indigo paint. There are blotches of magenta paint interspersed. There are rough horizontal lines drawn randomly over the paint. Some of the paint overlaps the brain.]

Close up of Anxiety showing blue paint over laying the sketch of the brain, splotches of magenta and bold ink lines.

Mental Health 2 - Intrusive thoughts.
[image description: rough pen and ink sketch of a face with eyes screwed shut. The face is surrounded by messy pools of blue watercolour with streaks of dark lavender and yellow ochre. The paint overlaps the edges of the sketch. The paint has a patina or pattern of small white splotches.]

Close up of Intrusive Thoughts showing texture in blue paint caused by sprinkling salt onto wet paint

Close up of Intrusive Thoughts showing strong lines of yellow ochre over the softer patches of blue.

Mental Health 2 Anxiety Attacks
[pen and ink sketch of a naked human body in a fetal position with their hands over their head. The figure is surrounded by jagged grey clouds which sharp lines reaching out toward the figure. Closer to the figure is a soft red hue with tendrils overlapping the figure drawing.]

Close up of Anxiety Attacks showing the tangle of grey and red lines overlapping the figure

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 - 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

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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.]

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[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