I was deeply impressed by the activist art Charlie is doing and found it natural to invite her to become one of the Real Life Heroes. She said no and that´s how our inspiring conversation began. Just as I am, Charlie is challenging the narratives that sick and disabled people are often confined to. She explained to me that it´s often that someone who is sick or disabled is either pitied or seen as inspiring. I agree with her, people are not inspiring because they are born with a disability or because they got sick and refused to give up. People are inspiring because they challenge others to think outside of boxes. We cannot define a person by one aspect of their life.
Charlie is a woman with a disability, but she is also an artist with boundless creativity and an activist who challenges the broad idea that sick people have to be patient and submissive and have to bow to the medical system. During our almost two-hour-long conversation, I discovered many more layers of her personality and if I had to describe her to another person, saying she is disabled would be the last thing on my mind. No, I´d begin by saying, Charlie is one of the most interesting people I have ever talked to.
We talked about pop culture and why disabled people are rarely the hero. We talked about the medical system and how doctors can fail patients. And we talked about finding purpose, creating art, challenging people´s views, and the importance of mutual care in a relationship.
Our conversation is a long read but I promise it is worth your time.
Did you have a big childhood dream?
Charlie: When I was a child I thought I would be a dancer and an actress, which is quite different from what I am doing now. I am quite severely dyslexic. I didn’t read a novel all the way through until I was about fourteen. The reading and the writing and the things I do now came really late. As a child, I did more physical things because my physical disability didn’t come on until I was an adult. I wanted to go to a dance or drama school. It was a completely different dream from where I am now. I always made art as well. I was always creating things. I made paper sculptures and worked with wood. I never felt that the art I was making was legitimate though because I couldn’t draw or paint perfectly. I had a limited understanding of art. Dancing and drama were something I had success with, so it felt more legitimate and it became my dream. Making art was just a hobby because I didn’t feel like it was a legitimate area for me until I became sick.
The first book I remember loving was “Of Mice and Men.” I read it in school. Previously I had never had English lessons with everyone else. I was getting one-to-one dyslexia lessons where I practiced really basic spelling. After reading “Of Mice and Men” we had to write our own chapter, and that was the first time I remember writing and realizing I could write and that there was more to it than just the mechanics. That imagination and storytelling were really important, too.
You got EDS when you were a grown-up. How was your life before that?
Charlie: It is genetic so I have always had EDS, but my symptoms didn’t affect my life dramatically as a child. I always had pain and bruises and I thought that was normal. I had a dislocated collarbone a lot as a child, but it was just this thing that happened to me and I popped it back in. It wasn´t a big deal.
Our perspective changes once we get labeled.
Charlie: Oh, massively. In relation to my outlook on life, I definitely had that healthy young person feeling of being invincible. Like I had all the time in the world. Like I had all the options in the world. The feeling that as long as I worked hard enough I could do anything. As I´ve gotten older I realized how much structural inequalities determine the options you have. Before I became physically disabled I felt like I had so many options, although I didn’t realize that until they were gone. I worked in bars and restaurants and did nannying, which is really hard physical labor. I would sometimes be working full-time on top of university. I thought that would always be an option for me. I thought I could always just go out, get a job, and have money. But it´s not. My body can´t do that now. It´s not an option and I have to be more creative to make money. I didn´t know anything about disability before. I was really wrapped up in my own small life.
I didn’t know I was disabled for years. I was sick. I couldn´t leave my bed and I didn´t know I was disabled because nobody told me I was, or that I could use a wheelchair or mobility aids to help me, or get access to support. I thought I had to get better. I hadn’t seen narratives like mine, and I didn’t recognize that I had a disability. It wasn´t until I started going online and found other people with my condition (artists and content creators) that I realized I’m disabled and could advocate for myself. That this was a legitimate way to live and thrive and be, and not a temporary moment of illness that I had to get past. Because I had no information about this kind of life, I thought I was an anomaly and I was completely alone in it.
To me, it makes perfect sense. Although I am handicapped since birth, I never felt handicapped until I was a teenager. When it started with dating and parties and things I couldn´t do. When you are younger, you just meet at your friend´s house and you play. I felt normal and suddenly it wasn´t. When I was 12, 13, 14 I started to think about being different.
Also what you said about popular culture. People with a disability are very rarely portrayed and then they are the sad sidekick, the sob story for the purpose of making the hero of the story looking more heroic. I can´t think of any disabled character that is portrayed as the outstanding hero, or just having a normal life. What you see are blind and deaf people but not a real physical handicap that makes you look different.
Charlie: If there is someone in a wheelchair it´s normally because they´ve had an accident. They were able-bodied and now they’re not. They don’t show a complex disability. They don’t show that person having desires or being a complex human being. They’re only serving a narrative angle for the hero.
I can´t remember the title right now. But there is this man in a wheelchair who needs a lot of care and his caretaker falls in love with him but all he wants is to die.
Charlie: Me Before You.
Yes! Did you see it? I couldn´t watch it because I was so upset about everything about it.
Charlie: So bad. When he does die in the end, it’s presented as fine because she is happy and living her life now. There was a lot of outrage about it.
I had friends who told me the film was so romantic and I was like: That´s not romantic! That isn´t even love! And what kind of message is that? Oh, I´m sick and now I have to die because I´m worthless.
Charlie: It was just that. I have this disability and now my life is over. I can´t exist like this. Which is such a common portrayal. When I decided to get my mobility aids I remember people feeling like I was giving up on the fight to get better. I was mostly in bed for three to four years. I wanted to go out! I wanted to see things. I wanted to go to a museum. When I got my wheelchair it felt amazing. Why had the doctor not said to me: You can use a wheelchair to go out. You don´t have to sit in bed all day every day. Alone. You can go and see your family. You can go to a museum. It is so bizarre to me that people aren’t encouraged to use aids. I was diagnosed with a chronic incurable condition. But there was no moment of, “You´ll be sick for the rest of your life and you´re going to get sicker, so let´s think about all the things that can help you live your life in a really comfortable way so that you can do most things you want to do.” There was never that kind of discussion. There was only, “We can’t do anything for you. Sorry and goodbye.”
So many people will become ill or disabled, or will be the partner of someone who is ill or disabled. So I don´t understand— no, actually I do understand why able-bodied people don’t learn about disability and illness, because they are scared. It makes them think about death and that´s what they find unbearable. They don’t see disabled life as living. That´s why the normality of disability and illness isn’t represented in popular culture.
Though it´s not a death sentence. We have a life, right? When you find purpose, and often you find purpose because of your limitations, then you actually have a richer life than all the people who go to an office job without ever thinking about anything else.
Charlie: I was a more unhappy person before I was sick and disabled. I want to make it clear that I don´t think that suffering or illness can be justified by the outcome of it. Maybe it´s just an age thing. Before I was ill I was a teenager. There were parts of my childhood and teenage years that were very difficult. It could be that I have been able to process these things because I am an adult. I do also think that the purpose I have now and the disability community have played a big part in me being happier now. I don´t want to say that my suffering was justified because I have this purpose now, because it’s not and my illness is hard.
I think we can find purpose in many things. That´s just how you found purpose. It is more an individual thing for you. Not everyone who suffers will find purpose and some don´t have to suffer to find purpose.
Charlie: And I was suffering before and didn´t find purpose in that.
I can relate to that. I was for about a year in hospital when I was in my early 20s and after that, I definitely didn´t find purpose. I just wanted to get the best out of life. A few years back when I was again severely sick that´s when I found purpose. I think it´s a combination of struggle and being mature enough to see it not as a punishment or a pause in your life but something you can use as a catalyst.
Charlie: The point that I want to make is that being sick and disabled is not a big pity party. There are awful aspects to it just as there are awful aspects in anyone’s life. It’s just as complex as any type of existence. It´s just a different type of normal life. It´s just one that people don’t like to speak about or hear about very often, which is a problem. Playing a part in changing that is where I found community and purpose.
You said you had to spend three or four years only in your bed.
Charlie: I had a few health problems when I was 21. I had a period where I had chronic fatigue following a virus for about four months. I was in bed for four months straight and sleeping for twenty hours. I was sleeping all the time for months. Then I started to recover from that and I was okay for about two years. When I was 23 I had a blood clot in my lungs and I didn’t really recover after that. I got sicker and sicker with various things. I carried on and tried to work and study for about a year, and after that, I got Gastroparesis and then my constant back pain. I couldn´t really stand because of the pain and I couldn´t do things for myself because of the pain. I couldn´t eat and got really skinny and then I had to go and live with my parents. I was living mostly in bed. I would maybe come out for an hour each day. I had my mum caring for, washing, and feeding me. I was mostly in bed for a couple of years and then I came to my husband´s sister’s house where we live now. Then my neck got really bad and for a long time I had to lay flat because if I was upright I would have seizures or various other scary symptoms because of my neck instability. I just used to watch TV shows to distract myself from the pain. That was considered acceptable by my doctors. They didn´t put me on pain relief and they didn’t find out what was wrong with me. I had to research and find out what I had.
The option of better pain relief or mobility aids was never suggested to me. Originally I was diagnosed with Idiopathic Gastroparesis. Idiopathic means with no known cause. My Gastroparesis, which is paralysis of the digestive system, is actually caused by my connective tissue disorder, EDS. So the connective tissues are faulty, they are loose and don’t move and squeeze properly. But no one was putting the dots together. Seeing different doctors and telling them all of my many symptoms, I was coming across to them as this damaging common trope of the hysterical woman. As a woman with a history of trauma who has all these different complaints. I was treated like a lost cause and it wasn’t going to change until I did my own research. I figured out that I had EDS. So I had to ask my parents to pay for a private doctor and later genetic testing. I have the gene mutation for Classical Ehlers-Danlos Syndrome. If someone had connected the dots earlier and had seen that the way I was living wasn´t acceptable it could have been resolved years earlier and I could have already been at the point where I am now, still ill but living, doing advocacy, and art and writing and getting some enjoyment and purpose out of my life.
It´s horrible how doctors can fail you.
Charlie: I am reading this book “Narrative Medicine” by Rita Charon who is a doctor and recognized that biomedical medicine is failing people. She sees the issue that doctors aren´t taught to view their patients as full, complex human beings with stories that can help the doctor treat them because they can tell their doctor, “This is what I want from my life. These are the problems I am having.” If only they would listen. Instead of just looking at a patient as a meat sack that you have to probe to get a diagnosis. As if medicine knows everything which it doesn´t. As if medicine was created equally, which it definitely wasn’t.
Her “Narrative Medicine” teaches doctors through storytelling and literary skills to view their patients as full human beings. She talks a lot about medical training and how all the things that make doctors more compassionate to treat their patients as humans and less as scientific experiments. The compassion and the belief in their patients are beaten out of them. So if you have a compassionate person who is going into medicine with all the things we would have thought would make them a good doctor, especially for chronically ill patients, and it isn’t nurtured in their training. They would have to become more ruthless and untrusting to make it through the current training.
I often think when they keep that compassion they are eventually lost because they don´t really know how to deal with that. I met this really young surgeon who has this compassion but I felt he was in a system where it isn’t supported and I´m afraid it will break him one day.
Charlie: This is why good doctors don´t last in the system. They are not supported. They are trained to believe if they can’t find a solution it’s their failing and it´s all on them, rather than the reality that they are human beings with very good but limited training. Doctors aren´t often told about the limitations of medicine. If you are a compassionate person and you are told you should fix the problem and you can’t, the pressure of that must be unbearable. Maybe you find ways of blaming that patient? Maybe you think they must not be trying hard enough or want to be ill?
I often blame doctors but I’m trying to understand the system better. And understand why we place those patient vs. doctor. We place them against each other. We often don’t place them in a scenario where we can have a good relationship with each other for a multitude of reasons.
Medicine could be better if doctors said it´s a team effort because the patient knows his or her body the best.
Charlie: I had that in Barcelona with my surgeon. The whole thing was a discussion and it felt like a team effort. They did an extra thing in my surgery and they hadn’t done it before and it was really risky. Me and him just sat together and chatted for an hour, going through all the risks and benefits, really debating and came to a decision together as if I was on his medical team. Which is how it should be. Doctors underestimate patients.
In the UK the funding is not there and we have ten minutes with our general practitioner and you are only allowed to discuss one thing. So if you have several health issues you have to make an appointment for each issue. You can wait weeks for an appointment. I haven’t had a face to face appointment with my GP since before my surgery in May 2019. You have ten minutes and it´s rare that you get to see the same doctor. You go to a practice, you could see anyone, you might not have seen that person before and you have ten minutes to talk about one thing. It´s just a waste of money and time. You need to have the same person. You need to have more flexible timing. It´s not good for the doctor either. How are they supposed to make a well-informed decision when they read your notes five minutes before, they have never seen you before, and you might be a ridiculously complex patient. And then they are making these life-changing decisions based on ten minutes and very little knowledge.
Tell me about your surgery.
Charlie: I have Classical Ehlers-Danlos Syndrome and I also have another gene mutation which causes a Marfan-like disorder, which I still don’t really understand yet. But I essentially have two connective tissue disorders that overlap. My neck was collapsing and the top joint was really unstable and it was dislocating when I was looking to the side or up and down. I had some private scans done in the UK which confirmed I had Craniocervical instability and Atlantoaxial instability. It was causing terrible symptoms like choking and sleep apnea.
They won’t do the surgery in the UK for most EDS patients suffering from this, they are just left without care, it’s a very complex issue and an injustice. So I had to fundraise and go abroad, but one of the concerns was returning to the UK and having no aftercare and the stress of having nowhere to go in an emergency. We decided to stay there for four months to recover, although it takes a year to recover. I had the surgery in May 2019. They fused my skull and all the vertebra in my neck with metal bolts to T1. They also had to drill away part of my vertebra as my jugular veins were compressed. This was the first time these two procedures had been done in the same surgery. The surgery took eight hours and I don’t remember the first few days after, but within a week I was eating again and most of my really frightening and life-threatening symptoms had gone. I was starting to lose my eyesight and my hearing and control of my throat and bowels and limbs, now all these things are a lot better.
When I have a possible emergency I don’t always go to the hospital because it often makes it so much worse and I don’t get the understanding or help I need. I get symptoms of blood clots a lot and we risk waiting it out until the very last minute. Which is really worrying, but in Barcelona there was no stress. If we had a problem we could go and see the doctors. It was really hard coming back to the UK and having that fear again. I am still very sick but I have learned to self manage a lot of my symptoms and conditions now.
One of the reasons they give for not performing the surgery on people with EDS in the UK is that it´s not worth the risk and I don´t see how that is a valid argument. If someone has cancer you get offered treatment that can cause lifelong disability and illness but even when the chance of survival is low they try. There is no doubt in my mind that I would have eventually died from one of the side-effects. From waking up at night not breathing. From choking on nothing. From having seizures. I was scanned just before my surgery and my neck was literally dislocating. That is very easily a fatality. Why are people not offered this as an option? It is bizarre to me. For me, it was 100 percent worth the risk. I went in there knowing I might not wake up. I prepared for it. I wrote letters. I and Oscar got married. We knew that I might not come out of surgery and that was worth it.
And you should have the option to make the decision yourself.
Charlie: Definitely. Most of the health care comes with negative sides to it. There aren´t many treatments which are just good. There aren´t many treatments that don´t have side effects, that don´t have risks. A lot of our treatments have longterm effects. You´re given the options and you weigh up, “Do I want to die now from this or risk dying from something else.” With a lot of more complex women´s health issues we are not given the options for a variety of reasons. Because of money, because of historical issues with women´s health, and the lack of research in these areas. It´s easy to write us off because you have all these narratives to fall back on, like hysteria narratives.
When you are a woman and also disabled then you are written off twice because they say, you´re not worth it.
Charlie: That’s something that´s becoming so apparent during the pandemic. There are so many people, myself included, who are afraid to get this virus. Not just because we might die from it but because we are more likely to not get treatment. They might say, you´ve been in a wheelchair and you have a carer, you must have a really awful life that´s not worth saving. Until you experience it, either as a doctor or patient, you wouldn´t believe it. The people in my life who I say this to are more aware, but some people look at me and you can see that they think I am a conspiracy theorist and I´m making this up.
Are narratives like this your reason for doing art and activism?
Charlie: I always used creative practices as a way of coping and working through personal things. Originally, I didn´t see my art as something to share with other people or as an act of activism. It was something I had to do for myself. I made art about my experiences as a need, an act of survival and then I would destroy it. When I met more disabled artists and activists online I saw that the work I was making was valid. Obviously, I can only speak from my experiences but I didn’t see myself reflected in popular culture. As I started sharing my work online, I got messages from people who could relate and found the work empowering. As I felt when I saw work I could connect with. Sharing this work has helped me find a community. I have been involved in disability street activism too when I have been well enough. Not as an organizer but I was always getting involved with things. Then other people started referring to my artwork as activism and I felt like less of an imposter when sharing art.
I started “Sick of Being Patient” about two years ago. I started keeping my work and sharing it and being more vocal against the expectation that sick people should passively accept a society and medical institutions that are failing us. I wanted to challenge these narratives. I began writing more, making poetry and formulating artistic projects, and then I created the “Sick of Being Patient” website where I keep this work. I had a few publications and was invited to speak at a university feminist society and from that point onwards it transformed into something that I was actively putting out there, a sort of cultural activism.
Now I´m also involved in another disability arts alliance. It´s a group called “We Shall Not Be Removed.” It was started because of the pandemic and the effects that has had on disabled people and the arts. We are campaigning for an inclusive arts recovery in the UK. It focuses on legislation. Whereas “Sick of Being Patient” is a sort of cultural activism, it’s trying to critique damaging narratives around illness and disability and to uplift the patient experience. It´s about my experiences at this moment in time but I foresee it becoming bigger and uplifting other’s voices when I have the capacity to do that.
How do you get inspired and how do you choose what you´re working on?
Charlie: I´m always working on lots of different things. For many reasons. Some of the things I work on can be so emotionally difficult that I have to give myself space from them. One project that I´m working on for myself, “Undressing Trauma,” is about medical trauma and specifically this horrific experience that I had at the end of 2016. I was away with family for Christmas and went to the hospital with suspected spinal cord compression and I had this awful experience with a doctor who was really inappropriate with me. She tried to undiagnosed my Gastroparesis, undermining my usual doctors, she missed all the signs of my spine instability and claimed all of my conditions were “in my head.” It was such a traumatizing experience and after that, it was really difficult to advocate for myself for a while. I started the project “Undressing Trauma” after this but it’s something I can´t work on for long periods. I´m using medical letters and the text I wrote after the experience with her. The nurses told me to write down everything that happened and report her. I wrote everything down but I couldn´t hand it in. I was too scared. That project is something I keep coming back to and I come back to it when something in my life sparks the need to work on.
In between, I have all these small projects which are sparked by something that happens in a TV show or sometimes from a conversation online or an appointment or something the UK government does. Recently, I´ve made a series of images called “Proud Disabled Women” in response to someone who was attacking me online for using the word disabled. And from that, all these ideas for other projects have come. Sometimes these are really personal things which are things that I need to do. Sometimes it´s a situation I want to comment on and raise awareness of.
What do you hope to inspire or change?
Charlie: I want to empower patients. The art is one side of what I want to achieve. I´m doing an academic study in the medical humanities. I´m really interested in how the arts, humanities, history, and philosophy can inform medicine and medical practice and try to understand the lived experiences of being sick and disabled in capitalist societies which are inherently ableist.
One of the things I started work on more recently is called “Radical Acts of Care,” which my partner and I have been working on for a while and we add things often. It was a virtual exhibition on my website but also an exhibition in a restaurant. It was inspired by the artist and activist Johanna Hedva’s text “Sick Women Theory.” Toward the end of the text, it says, that the most radical thing that you can do is to survive and to care for yourself and care for other people. The nature of care within capitalist societies and the nature of care as a radical act is something that my partner, Oscar Vinter and I are interested in. We have a relationship of shared care in which he does most of the physical labour and I do more of the administrative or emotional labour. That´s where our strengths lie, if he struggles with how to handle a specific situation I will help him. People assume that he cares for me and I am his burden. But we care for each other. So people see him as this great guy, which he is, but not for being with a disabled woman. The work we do together often advocates for care–for yourself, within society, and in a relationship. We highlight the importance of care and demystify the negative association of caring for someone.
Were you ever embarrassed when he has to help you physically?
Charlie: He used to have to do all my personal care, like helping me to go to the toilet and washing me. Because we´ve been together for quite a few years and I have been disabled from when we were first together we were at a place where I never felt uncomfortable. I know that’s not the case for everyone. It was this very natural thing for us. Before we decided he would be my full-time carer, he was working and I was approved to have carers come in and that was really scary. The idea of having a different person coming in every week and help me to go to the toilet, help me wash and help me eat and then leave me for hours unable to do anything that was really scary and we didn´t go through with it. He stopped working to take care of me. Caring has become a natural part of our relationship. It´s not even viewed as unusual and it played really well in our artistic collaboration. We have created this term pot artist medium ‘Assisted Self-portrait’. When I want to take a self portrait in a specific way and I´m unable to do it I will direct him and get him to take all these pictures. Instead of erasing the part, we both play in it, we came up with this term that honors the fact that we have a part in making that piece of work happen. The care that I need in those moments to make the work become artistic collaboration which I think is really cool.
I think that´s really beautiful. Many disabled women are afraid of meeting someone who has to help them. In my case, I can do everything on my own, but for example, I use the bathroom differently from a non-disabled woman and I am always afraid that there will come the point where I have to explain this. When you tell your story it´s very powerful because people can see that it doesn´t always have to be difficult or shameful with the right person.
Charlie: If I think back to previous boyfriends, the idea of trying to have this same kind of dynamic is terrifying. I would have been ashamed and felt like a burden. With the right person, it can be really good and make your relationship better. Our relationship is stronger now.