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

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.

Selling Art for Lyme Disease

I have talked about my experience of Lyme disease several times on this blog. It's a big part of my life.
The 28th of October was my 7th anniversary of being infected with Lyme disease: I was bitten by the tick that infected me on 28th of October 2011.

Each year I like to do something to mark it, and if possible to raise money for Lyme Disease Action, one of the few registered charities that is both educating and supporting research into Lyme Disease.

I decided to mark the occasion this year with some art. Both the animals I chose to paint are carriers of ticks in the UK and may be carriers of Lyme Disease. The hedgehog of course holds particular significance to me as I was roleplaying as a hedgehog at the time of being bitten. Never say I don't really get into character.

Each painting started with an ink and fountain pen sketch and was then coloured with water colours before being finished off with a little more ink. While I went down a natural route for the hedgehog I decided to go a little more whimsical with the badger which is painted in a beautiful mixture of teal and magenta handmade water colour paints.

image description: painting in shades of blue and magenta of a badger.
Original Painting by Robin Tynan available to purchase for £35

image description: watercolour painting of  a hedgehog with a mottled green and brown background.
Original Painting by Robin Tynan - SOLD

Both paintings are available as prints from Society6  and all profit will go to Lyme Disease Action.

The original painting of the badger is available to purchase for £35.
Please contact for details.

Caring is not a heroic task

I am having lots of thoughts and feelings about what happened yesterday that I need to get out. So long post warning. (CN: seizures, drug and alcohol use, homelessness and related issues)

What happened

I was walking along a pretty busy street (Boar Lane) in Leeds heading to get a bus. Just off the pain pavement I saw a guy start to have pretty severe convulsions. It was distinctly not somebody wobbling and stumbling as if drunk. He was still mostly upright at that point but was starting to sag. I went over to help him - he appeared to be unconscious and seizing. I got my arms around him to stop him falling but couldn't lower him to the ground by myself as a fully grown unconscious person is difficult to manoeuvre. I called for help and a man and woman came over to me. The man called for an ambulance and the woman helped me lower the patient to the ground. He was still seizing but we got him into the recovery position. Eventually the convulsions stopped but he remained unconscious. his pulse was weak and his breathing irregular to start with though it did steady eventually.

We stayed like that for 45 minutes waiting for an ambulance monitoring his heart rate and breathing.

During that time three people stopped to see if wee needed help, two security guards asked if we needed him moving, a pair of Leeds BID asked us what he'd taken and and, group of kids stood and watched and told us we were idiots for helping him.

Also a group of homeless guys came over to see what was happening, managed to give us his name, informed us that he suffers from seizures but he'd been using spice so he was just sleeping and then left.

After 45 minutes the guy woke up confused and a little belligerent. I managed to talk to him for a few minutes but we couldn't keep him there and he left. He told us he had been smoking spice not long before it happened. He left to go and smoke more.

The aftermath

So last night and today I felt like crap. Part of me is so angry at all the people who walk past and stare and do nothing. I guess when it's fairly obvious that first aid is happening and somebody is on a phone you don't need to stop because it's under control. But at the point where i was one small person with a walking stick trying to hold on to a fully grown convulsing man how many just ignored it. The people who did help were lovely. They weren't local and were having a short break in Leeds this was their first day.

What's worse though are those who said we shouldn't help. The people who are happy to ignore somebody in distress because they look homeless. From the distance I was at when he started convulsing I could see no indication he was homeless or a euphemistically named "street drinker". I wasn't even sure when I literally had my arms around him with him leaning his full weight on me. I wasn't sure when he was on the ground (though I had a fair idea at that point) and saw the dirt and the purple ears and the abrasions and other signs of spending your days and nights on a street. I was only sure when the other local homeless people came and told us.

But even then why does his status as homeless or a drug user make him less worthy of help?

Several people said "oh it's just spice." or some variant on that. But it doesn't matter. he had a seizure. Maybe if he was just asleep it wouldn't matter, it would be "just spice" but he had a seizure. That's not normal. That's not good. OK using spice isn't exactly good for you and but neither is sleeping rough. But that doesn't make having a seizure any less of a medical red flag or to be taken any less seriously.

I was particularly angry at the Leeds BID (Business Improvement District) reps who walked up and the first thing they said was "what has he taken?". No concern for his welfare. No concern for our welfare. Just an assumption and a judgement that he had taken sometihng. At that point we didn't know anyway. When we responded with "maybe nothing, he had a seizure" they just walked away.

Since they first appeared I have had a strong distrust of Leeds BID and their bowler hatted reps. Their purpose is to make Leeds attractive to investors and business. Their methodology is to remove anything on the street that isn't aesthetically pleasing or is in someway distasteful or a nuisance. They make me think (not helped by their uniforms) of some sort of Nazi era brigade charged with ridding our city of the unclean and unwanted, those who are a stain on their plans of creating a capitalist utopia. I don't believe they have any real power to move or harass homeless people but they do. I have a horrible nagging suspicion that they would deploy the same tactics on disabled people if they could especially those who use chairs and scooters and don't look "inspiring" enough.

Image shows three people wearing matching Leeds BID uniforms of white shirt, black skirt or trousers, black waistcoat, yellow tie and a black bowler hat with a yellow band. The are stood in a street and are smiling.

Certainly this interaction didn't do anything to improve my opinion of them. It just made me sad and angry.

Thankfully the couple helping me seemed to share by views and put up with my emotional socialist rambles.

The other group that had a big impact on me were the kids. This was toward the end of our tenure as carers. A group of kids maybe aged around 12 years old? (I find it really hard to age kids, especially boy presenting kids who are over the age of about 8 and under 14). They stopped and leaned on the railing and watched and jeered. They couldn't understand why we were helping him. They kept saying "he's just asleep. It's just spice". First of all why were they so familiar with spice. That was so terribly sad. I don't want to pretend that at that age I was unfamiliar with drugs or their specific names but I don't think I would have been so blase about it when seeing somebody unconscious in the street. What was even worse is they were right. He had taken spice. How are these kids so familiar with it that they can tell when somebody has used it and just not care.

How are these kids so uncaring that a man passed out in the street that it doesn't bother them? Is it uncaring? Is it a lack of compassion or is it just that for whatever reason they have learned that this is nothing to be concerned about. I know it is highly unlikely that all or even any of those kids were genuine psychopaths, rather that these were learned experiences from listening to and watching adults or even worse based on their exposure and familiarisation with this sort of event. While their reactions were aggravating and unhelpful at the time, really it was overwhelmingly sad. It was heartbreaking to think that these kids were growing up learning not to care. That they were growing up intimately familiar with dangerous drug use. That they were growing up thinking it's ok to abandon somebody in need because they may be a drug user. I just don't know what to do about that. I can only hope that seeing three people taking time out of their day to care may sink in. I can only hope that the explanations we gave - that it doesn't matter the reason, that we didn't want him to hit his head, that seizures aren't a normal reaction and should be taken seriously - were enough to convince them that maybe it is worth caring even if it's "just spice".

For some reason the fact that those kids witnessed the guy waking up, had it confirmed that he had been using spice and saw him walk away just made it all the more bitter. I fear that all their bias was confirmed. It was just spice. He was "just sleeping". We were just silly people who cared too much.

I keep coming back to that. Even the ambulance service, who I know are stretched thin, didn't think a person who had been unresponsive for 45 minutes following a seizure was worth responding too. Possibly just the location - an area with a lot of street drinkers and drug users during the day - was enough to make them lower the severity of the call. Maybe I am naive to stop and help. Maybe I should have walked away. Maybe it was "just spice" and he was "just asleep" and it wasn't worth my effort.

Because afterwards I was physically exhausted. Adrenaline hurts my body. I mean really hurts. Afterwards I was shaking and exhausted and in pain. I had a panic attack and was looked after by a nice barista who saw me shaking and saw my Stickman Communication cards. I could hardly stand up. I could hardly talk. But there's the person we just spent 45 minutes crouched over monitoring his breathing, keeping his airway clear staggering away and rolling another joint so it can all happen again.

photograph shows two stacks of laminated cards on a table next to a glass of water and a hot chocolate. The cards are brightly coloured with text and stickman drawings on 

I know the maxim "put your own oxygen mask on first" meaning see to your own welfare before that of others - because if you aren't OK you can't look after others. Maybe that's all that the people who walked past and said nothing were doing - putting on their own oxygen mask. Don't have the skills or temperament or physical or mental capacity to help, don't get involved. I can't judge that. I really can't because sometimes you do have to consider your own well being and I can't begrudge somebody who doesn't have the skills to get involved in something they may not understand. So why do I. Why don't I put my own needs first. Am I really that stupid and naive to think that it is worth it? It's not the first time.

What the hell is this world we are living in that I am left to feel ashamed and stupid for caring about somebody? Why is it that the first and accepted response is "what has he taken?" and then to move on?

So here I am the day after what turned out not to be a medical emergency but may actually have been a medical emergency tired and sore and broken and vacillating from sadness to anger to self doubt.

I don't want to be told I am a hero or that I am a good person. It shouldn't stand out. It should just be what people do. But it isn't and I don't understand that.

I am so incredibly lucky that the people who stopped to help were of the same mind and that same willingness to help regardless of if it was "just spice."



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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

A Question of Horses and Ethics

[content note: animal death, mentioned throughout. Detailed discussion is flagged within text]

Yesterday (9^th June) I went to Bramham Horse Trials. It’s an international event with a number of competitions going on but the main events are the CCI3*, CCI3* u25 and CIC3*. These are top level¹ Eventing competitions with highly qualified horses and riders in. For a horse nerd like me it’s super exciting. Even if you aren’t a horse nerd, like the friend accompanying me, it’s a fun day out. You get to see the horses being ridden cross country, in a gorgeous English country park setting, taking on some pretty impressive jumps and obstacles.

Overall it was a great day out. I didn’t quite get the experience I wanted due to my chronic health issues: I had been struggling in the run up to it and had to hire a mobility scooter on the day to get around. Both my health and the scooter meant that haring around the cross country course wasn’t on the cards for me. But just being in that environment (and on a lovely summer’s day) was great. I got to see gorgeous horses, event riders I admire, talk about horse things, be surrounded by Good Dogs look at fancy horsewares and drink pink lemonade.

Image shows to black and white photos side by side. In the first is me wearing a wide brimmed black hat, black T-shirt with a hand print on and glasses. The second picture is a view of the control panel of a mobility scooter with show jumping arena int he background.

As an aside can I note how pleased I am that there is a company that specialises in day hire of mobility scooters at these events. I honestly wouldn’t have been able to go had it not been for them and I know I wasn’t alone in that².

The day however did have a low point which I absolutely can’t ignore, even if I wanted to. Those of you who follow equestrian sports or eventing may have already heard that a horse died at the event: Second Supreme ridden by Chuffy Clarke.

A horse dying at a three day event is always tragic. Thankfully these days it is pretty rare but that only goes to make it more tragic. Being at the event where it happened lends a certain poignancy. Being on the course and stood at the fence only a few feet away from it is heartbreaking.

And that’s where I was. One of a handful spectators stood on the landing side of fence 24 who saw Second Supreme stumble and fall and the response that followed.

What happened

The following paragraphs are going to explain what I saw in some quite blunt terms. This is as much for my own catharsis as it is to try and explain to people what happened and to help understand the implications.

Coming up to the fence Second Supreme (known as Ed on his yard) was lacking some impulsion – the oomph that helps make a good jump – was lacking, but this fence was near the end of the course so it wasn’t surprising when it looked like he needed a big effort to get over the fence. But the landing was just, not right. It’s hard to put a finger on it but it was just slightly awkward. As the pair tried to move away Clarke did her best to “pick him up again” and get him moving forward, but he just wasn’t moving right. His left hind leg wasn’t stepping properly and the foot was bending incorrectly, and turning under instead of down. He took a few stumbling steps as Clarke tried to get him moving and then starting with that odd left hind his legs just buckled and he fell on to his side. 

Clarke extracted herself and took a few steps away looking shaken and confused (it’s standard to step away from a fallen horse as they can flail a bit with their legs as they stand up and it can be dangerous for people on the ground). Ed didn’t attempt to right himself though, he lay there, his head down breathing heavily. At this point the stewards, one of the on-course vets and Clarke were attending to the horse. The tack was removed, he had cool water poured over him, and examinations began. Clarke was now holding her horses head in her lap and looked to be in shock, she was clearly distraught and had people looking after her (I don’t know if they were friends or course stewards, though I know her team rallied around quickly coming from the stables and finish line). 

At this point the vets had already erected a portable screen but from our position we could still see. Ed was now lying very quietly with visibly laboured breathing: it was likely a sedative had been administered. Another vet had joined and the equine ambulance (an adapted horse trailer) had pulled up. It was clearly very serious. There were whispers that the horse had gone into shock or had a heart attack, which was far more serious than the broken bone or sprain we had “hoped for” with the initial stumble. As the second screen was erected around the scene those of use not involved waited, subdued a stark contrast to those who arrived cheery licking ice creams fresh from other fences and who didn’t know what had happened. We heard a few huffs of breath from Second Supreme and then nothing but muted voices, and then the winch. I think we all knew what the result was even if we didn’t want to admit it. As the screens were lowered and the ambulance drove away Clarke was led by friends and family to a waiting car.

You may ask why I stayed and watched it, you may even think I am gruesome or insensitive for doing so. First I want to make clear that this was not morbid curiosity, rubber necking or delighting in other’s misery. It happened right in front of us, literally feet away. When these things happen a sort of bubble is created centring around around the incident and including those who have been impacted or involved some way. Simply due to proximity my friend and I were in that bubble. Leaving that bubble is difficult. Though we were not in a position to help, aside from the fact that there were better qualified stewards and medics on hand I was on the mobility scooter and not especially fast moving, we had still been some how caught up in the event. We weren’t alone. There a few others near by who were similarly frozen in place. When something like that happens walking away can seem like a callous act, as if you are shedding yourself of any association. I couldn’t leave somebody who was hurting. For my own anxiety too I had to see it through I know the outcome – even once home I was scouring twitter and equestrian news sites for information.

At the time of writing the cause of death was given as “unknown suspected to benatural causes” according to the official statement from Bramham.

Now you know what happened you may understand why my response to the whole event has been a bit muted despite other highlights. But it’s also given me a lot to think on and it’s a very difficult subject to wrestle with.

Chuffy Clarke and Second Supreme competing in the CIC3* at Barbury 2017. Picture by Peter Nixon

Knowing the risks

Almost everybody competing and working in horse sports love horses in general and especially the horses they ride or care for. Therefore loosing a horse in any circumstances is hard. As with any activity, there are risks and we know that death of the horse is one of the risks, especially in high stress events like cross country. Now there are things we can do to mitigate these risks – the horse is trained carefully and only asked to do the harder courses when they are physically fit and shown they are capable to do so. They have excellent veterinary and other health care year round and the events have vets on site. 

A major component of three day eventing are the trot-ups: before each phase of competition the horse is trotted in front of a team of senior vets who look for lameness or other signs of potential problems and given a brief examination. If there is any suspicion of issues they are held and given a more thorough examination before being able to carry on with the competition. If a horse is competing in a CCI3* you know that it is fit and healthy enough to be there and has been prepared. This reduces the risk of incident and death. Of course mistakes can and do happen, but again these are mitigated as much as possible – a fit horse is less likely to stumble, a good line into the jump is safer, there are safe options if you horse isn’t jumping well, the very design of fences has changed in the recent decades to reflect better understanding of risk and safety.

Horses are also surprisingly fragile creatures. I have known of people who have sadly lost their horse after an accident while it was out grazing. A horse was put to sleep at a competition last year after falling while walking back to the stable and sustaining a major break.

We know that these things happen.

It’s very difficult to deny though, that sometimes we put them in situations where they are more at risk. Though I am strongly of the opinion that most horses competing in cross country genuinely enjoy it, it still isn’t a natural activity for them and they are there because we choose to train and ride them in these physically intense manners.

This is something that is hard to rationalise both as an animal lover and as a vegan.

Ethics, horses and being vegan

Part of my personal ethics behind being vegan are to do with the exploitation of animals. Putting animals into unnatural and often harmful situations for human gain is unethical. And yet I ride horses and enjoy watching equestrian sports. It’s can be difficult to wrestle with that at the best of times but when faced with tragedy in such a visceral way I think it’s important to stop and think about these things.

So obviously we can look at the incident itself. Was it an act of abuse, neglect or cruelty? I know there are some people who would say that any horse riding but particularly cross country is inherantly abusive or cruel to the horse. I am not one of those people. I think some riders and owners can be cruel and abusive but I don’t think the riding or the sport itself is the cruel thing. I think horses can and do enjoy it. I think it can be done safely and in a way which is not just not-bad but is actually beneficial to the horse if we consider their bodies as we would human athletes – we would rarely if ever accuse a top athlete in peek fitness of self harming for the training they do, in fact we often aspire to be more like them. In some ways we can apply this to well trained horses, they are in peak physical fitness. However like humans, once you start pushing the body or concentrating on competing you may be more susceptible to injuries. It’s not unknown that a lot of athletes sustain multiple and recurring injuries as a result of their training and competition, especially if there is a fixation on “being the best”.

This is where ethics come in to it and questions of informed consent. A human athlete can make decisions for themselves about if they think it is worth risking those injuries and if they are happy with what that might mean for their future a health. In the case of horse riding, it’s not the horse making that decision, we have to make it for them. Is it ethically sound for us to decide it’s ok to put horses into a position that risks their health and even life? Is it ok for us to make that decision when a horse may not know of the risks or the safety measures in place?

Additionally when the rider is injured or struggling they know if it’s ok to push on or if it’s time to stop (well most of the time). The horse can’t tell us. Even with some of the amazing bonds these horse and rider pairs have, as with Chuffy and Ed, and with all the practice of reading horse body language in the world they can’t just tell us if they are feeling a little off. Especially mid way around a cross country course. Did your horse clip a fence because he wasn’t paying attention or you asked him to take off a fraction late or is it a sign he’s starting to feel unwell? We don’t know. We just don’t.

Chuffy Clarke and "Ed" Second Supreme. Photo by Ben Clark

For many riders, whatever their discipline whether they ride for pleasure or too compete, how much your horse trusts you is a big part of the bond and relationship they have with their horse. It’s all about trust. You ask the horse to do things and trust they will listen and not endanger you, they trust you to negotiate them through tricky situations that their tiny horse brains can’t deal with. Sometimes that’s walking past a scary looking wheelbarrow in the corner of the arena, and sometimes that’s going over a big jump and ditch. They trust us to look after them, not harm them and get them through scary or tough situations.

That’s a lot of responsibility in the owner or rider’s hands and it is something that has to be taken into account when we make our risk assessments or decide how, when and where we ride horses.

So back to the vegan question and ethics. As noted earlier a lot of vegans believe that no horse riding is ethical at all (or carriage/trap driving). They class it as subjugation of the animal: of making the animal do things against their will or without consent. Now, as touched on earlier there are ways we could say that we are not doing things against the horses will: we can read body language and behaviour and you get a feeling for the horses moods, likes and dislikes. I would be lying though if I said that we always respected those. Much in the same way a parent may say “I know you don’t want to go to school, but you have to go to school.” A rider may say “I know you don’t want to leave the paddock but you have to come and get tacked up.”. Additionally there are some vegan’s and animal rights activists who argue that any tack, but especially bridles and bits are cruel and abusive. Now obviously there are times when a bit or bridle can be used in a cruel or abusive way but that is more down to the individual rider than the nature of bridles and bits in general. But do horses like being bridles and bitted? Well that’s a loaded question and seems to be very dependant on context. I am not going to get into the whole debate about bitting that has been running in perpetuity in the horse world but I would say that there are some horses who behave very differently with and without bits and not always in the ways you may expect³. Suffice to say I don’t subscribe to the “bridles are bad and people who use them are bad” thought.

If you feel this is getting a bit long and rambly, you are right and I apologise but I hope you are seeing some of the ethical concerns I have been wrestling with over the past day.

What next?

Let’s look at some of the implications and what this sort of incident actually means.

Firstly regarding the specific incident there will be an investigation in to it.

That does not implicate Chuffy Clarke in any wrong doing it is simply a necessary process to go through as part of the ever evolving risk assessments of the sport. The investigation will be carried out by one or more of the governing bodies of the sport (the FEI and British Eventing) as well as the Bramham Horse Trials organisational team including their senior veterinarians. Things that will be looked at include the course design (designed by well respected rider and trainer Ian Stark), if there was anything missed in the vet checks, the overall health of the horse (including an autopsy) and, how the ride had been up until that point including Clarke’s riding.

It may be that one or more people made a mistake or did something wrong, from stewardship to vets to rider, that triggered or lead to the incident. If there was a mistake it may be that that in itself wasn’t enough to have lead to the death of a horse or to anything being have done differently. They may decide that something was at fault that could have reduced risk or prevented or mitigated the incident. In those cases they will then decide if any punitive action is needed⁴ or if it is simply a hard lesson learned and that it won’t be repeated.

Clarke is undoubtedly going through a very tough time and will be taking her own time to think over what happened as she comes to terms with the loss. If there was rider error then it is hard to imagine what tougher punishment could be doled out than having to be a part of a tragic accident and suffer that grief. Even without rider error, it is an astoundingly difficult thing to deal with.

She will be going through her own process of considering ethics and risk assessments, but from a very different point of view to me. Her information is different and her priorities as well as responsibilities: even if we were all to mutually decide that horse riding is unethical and we should all stop right away, she still has other horses who need exercising and looking after properly (and no, the answer isn’t simply turn them all loose) she has a responsibility to her horses if nobody else.

Additionally any investigation of this nature gives us more data to plug into our risk assessments. If there is any inkling that some action could have reduced the risk of such and accident then that’s going to be factored in to any future course design, rules and events. It’s unlikely that any one incident, even as tragic as this would result in a sudden or dramatic change to how things are done, but it would be added to our cumulative knowledge to help improve things in the future or to make small but necessary adjustments.

Now what it means to me personally. What does all this amount to? I don’t know. I do ride horses, I do not currently compete in any discipline or own my own horse. That in itself limits the impact. Do I believe I can be a vegan and still ride horses. Yes, I think so. I think it’s important to fight for best practice to be minimally invasive, campaign for better regulation and call out genuine abusive practices when you see it. I think it’s important to me to learn to ride well in a way that puts minimal stress on the horse. I think it’s important for me to learn methods which don’t rely on out of date or harsh methods.

I think we can ride horses in an ethical manner. But I do think that has to be done with consciousness and care and that we do reassess what we are doing periodically, even if there hasn’t been a tragic accident to prompt you.

I am not currently sure what I feel about eventing and cross country. That’s going to take some more processing and I think some more research. Though I ride I am not an eventer and I don’t know the ins and outs of it like other people. Learning and understanding those things is going to be key to making a decision on how I feel about eventing and how that relates to me as a rider and as a vegan.

Horses, just like any other animal should have the right to be treated fairly and not to be forced into activities which put them at undue risk or harm. That remains important to me.

Photograph of me riding a chunky brown and white horse. They are in an indoor arena.

Most of all right now I am feeling very sad that I witnessed something so tragic and I know that that is nothing compared to what Chuffy Clarke and her family and team must be going through. I can only hope that they have the time and space they need to recover and process their thoughts.

1OK almost. There are also 4* events that are bigger and tougher, but there are only a handful of them worldwide

2Mobility Scooters were provided at the event by http://www.eventmobility.org.uk/

3A good video summing up some of the issues can be found in this youtube video by trainer Shelby Dennis

4The FEI has a mixed history of how much impact their sanctions and official warnings actually have with some riders being known repeat offenders. This is an ongoing area of contention but things are improving and it does not mean that there is no repercussions for riders or others who do things wrong.

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!

Ticks, Lyme Disease and LARP

Ticks are found anywhere there are animals, especially grazing animals and those that live in woodland undergrowth.

This is important information if you are a LARPer as many of our games take place on land that is perfect habitat for ticks and the animals they live on. If you spend anytime outdoors in these sort of places you should be aware of what ticks look like and learn the early symptoms of Lyme Disease.

photograph of the back of a child's neck with the hair pushed aside to show a small dark lump embedded in the skin at the hairline. This is an embedded tick.

photograph close up of a person's finger tip. There are four ticks arranged from smallest to largest. The smallest is a fraction of a millimetre. The largest is ~3 millimetres long.  

Look out for ticks

Check your body over each day (before bed or when dressing) for tick bites. Tics usually latch on to feed so run your hands over areas you can’t see clearly or get somebody to help. Look out for bites with dark spots in the middle or small hard lumps - this is the attached tick.

If you find a tick still attached you need to remove it as soon as possible using a safe method. The best method is to use a pair of tweezers or special tick tool to gently grab the tick as close to the skin as possible and firmly pull up and out. 

Other methods such as smothering with vaseline or burning off are not as reliable and can leave you with part of the tick still attached or feeding for longer than you want.

three panel illustration from Kid's Health. Panel 1 shows how to grasp a tick with tweesers for removal. Panel 2 shows cleaning and checking the bite area. Panel 3 shows saving the tick in a ziplock bag for later testing.

Once removed wash the bite and then keep a very close eye on your general health.

The Bullseye Rash

Look out for a bullseye rash as pictured below. 

close up photograph of a person's thigh showing a large circular red rash with faint "bullseye" markings

Large poster from Lyme Disease Association showing a number of different Lyme rashes both typical and atypical.

If you develop a rash even if you didn’t see the tick or know you were bitten get to a GP as soon as you can. This isn’t an A&E (ER) thing but you do want medical attention sooner rather than later. It can take up to 2 weeks for the rash to appear. This rash is an early symptom of Lyme Disease which is a bacterial infection spread by ticks. 

Symptoms to be aware of

If you know you were bitten by a tick or suspect there is a chance you were (i.e. you have a bite but don’t know what insect did it) and start to develop severe flu-like symptoms then go to your GP as soon as you can and tell them you had an insect bite.

Severe flu-like symptoms include:

• extreme fatigue
• muscle and joint aches
• dizziness or vertigo
• tender glands esp at the neck
• general feeling of unwell
• you generally will NOT develop a runny nose or cough

While the rash is a classic symptom of Lyme Disease it only appears in around 50% of cases. Generally if you have a rash or other indicative symptoms your doctor will give you a prescription for antibiotics. This is usually a two to three week course of something like doxycycline. 

With an initial course of antibiotics taken within a few weeks of infection Lyme Disease is usually completely treated and cured, and you will make a full recovery. 

Untreated Lyme can have long term affects on your health and can be serious however by knowing what to look for you can get treated early and be fine. 

Other preventative measures:

Insect repellents - most insect repellent will have some effect against ticks but those containing Icaridin/Picaridin/Saltidin/Bayrepel/Piperidine or PMD/Citriodiol/ Lemon eucalyptus /menthoglycol are most effective. Remember you need to reapply throughout the day, especially if you wash or get rained on.

Clothing - ideally long sleeves and trousers that are tucked in to sock will keep ticks off of you. They can sometimes get inside cuffs and collars though to do be careful to check.

A note for LARPers- all players and crew who take place in games outdoors should be aware of this information. It’s not just combat characters who go crashing through hedges that are at risk. I got bitten at a game in October 2011 playing a non-com who was hiding. The first picture of a bullseye rash comes from a person who was bitten two weeks ago while running a game.

Why do I make these PSAs?

Now for my personal story and why I always link LARP and Lyme. As I mentioned I was bitten at a LARP game. The game was called Winter in the Willows and had us playing animal characters based on the book Wind in the Willows. I was playing a hedgehog. 

During the game we were approached by a pair of otters who were part of an evil cult. These otters radiated a mass fear effect causing all characters within a certain radius to react with terrible fear. Most characters chose to flee. However, me being a hedgehog did what hedgehogs do best. I curled into a ball and rolled into the underbush, quivering with fear, to hide. I didn't leave until the otters were gone and a trusted IC friend came and got me. Excellent roleplay. Very effective.

That evening I had a sore spot on my shoulder. I occasionally get acne or spots on my shoulders and though nothing of it, just rubbed it a bit and carried on with things. Once home from the game I still had the sore spot on my shoulder and could feel a little lump. Because of where it was I couldn't see it. I assumed it was the head of the spot or it had gone a little crusty or scabby. Gross I know but I think we've all experienced spots like that. I knocked the "scab" off and cleaned it and that was it. 

Within a week I started to get ill. I was exhausted, my body was aching, I was getting dizzy spells and my glands were tender. I assumed a bad cold or "post LARP lurgy" - it's not uncommon to pick up a bug at a LARP event after all. But I didn't get better. 

Instead it got worse, but never turned into flu. After two months of this I finally went to a doctor. I was told it was post viral fatigue and I had probably just caught a bug. I was tested for Epstein-barr virus just to be sure but it was inconclusive. Another month passed with no improvement and fatigue and pain that was causing me to miss work. That's when the real testing began. 

Over the next six weeks I had countless blood draws for testing and, thanks to my job at the time being veterinary science, we tested for pretty much everything usual and unusual and down right rare. 

I got a positive diagnosis of Lyme Disease in May, the day before my birthday. That was 6 months after I first got ill. 

I won't go in to the whole story of treatment and doctors because it is lengthy and a bit dull. But suffice to say, 6 months is too late to be starting with a basic course of doxycycline. I'm still ill 6 years later. That doesn't happen to everybody, but really you need to catch and treat it early. 

Don't be like me. Know about ticks and Lyme Disease and look after yourself.