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<3Let’s try to save Megan’s life. TW-eating disorders advocacy...<3

Megan is a young girl whose life is in active danger… 

(Trigger warning: ARFID, Bulimia, anorexia, weight loss and self worth / coping mechanisms) 

Megan is a girl like any other. She has a favourite place and a colour she adores the most. She probably has a treasured childhood cuddly or blanket that makes her smile, an old childhood toy or collection that she doesn’t yet wish to part with. She has stories to tell and lives to impact… she has a future that has just as much worth as anyone else.


She, like thousands others, is a victim of horrific stigma and ableism and consequently, if we don’t act FAST, she may even die.


In an effort to try and protect young Megan, the autistic community are rallying to try and help- one charity - Autism inclusive meets, appear to be one of many leading the charge.


This is what they have to say:


Autism inclusive meets charity say:

We are protesting the cruel abuse that Megan has suffered in The William Frasier Centre, 19/1 Tipperlinn Rd, Edinburgh EH10 5EX


The protest will take place outside the centre on July 23rd from 11-3pm’


To avoid distressing other inpatients, there will be no loud speakers or loud chanting. 


See information and petition link below:



TRIGGER WARNING FOR DISTRESSING VIDEO FOOTAGE:



…’


What I say: 

Let’s try to save Megan’s life.. 


if you can, Please go along to the protest, sign campaigns and show support however you safely can, you will be welcomed by friends and like minded people, and please do what you can to support Megan, her mum Shona and Autism inclusive meets charity who are trying to help. Together we must take action however we safely can- Megan is in danger of starving to death if she is not discharged back to her mother's care. 


To help, let’s learn about what happened? (Below is Megan’s ‘story’ told using her mother’s own testimony - but rewritten by me with all the facts used in Shonas testimony. 


Megan is 18, she is Autistic, Learning Disabled, has ARFID eating disorder, and Hypermobility.

 If you want to Learn about ARFID, please read further down in this blog here, and do your own research too…


In an effort to help (but quite typically done so in a way that ignores the real issue and is laden with ableism and stigma)

Megan was prescribed nutritious calorie laden shakes to eat, in addition to the three meals a day plus snacks she was having. This was given in an effort to help Megan gain a safe amount of weight, as requested by her mum Shona. It’s important to note that the 3 meals a day and snacks were all made up of safe foods - safe foods that CANNOT be tampered with and cannot be swapped or changed. Safe foods is the only thing Megan can eat, it’s not a choice and it’s not mind over matter, because of ARFID any other foods are literally as dangerous as eating raw meat or random plants your see that you don’t know for certain are safe. 


If anyone has ever tried to feed a child who they love, something they really cannot and don’t want to eat, you’ll know how devestating it is and how many ways you try to help feed them. Shona was in this position too because Megan couldn’t tolerate the powdery drinks that were also not in her safe foods - and along with her safe food diet (along with ARFID) Megan couldn't tolerate the taste or texture, so she refused to drink them. The important thing to remember here is that refusing to drink these foods is not a choice, it’s a an unavoidable way to stay safe. Shona, being Megan’s mum, understood this. Desperate to help, Shona enquired about an NG nasal feeding tube as she was concerned that Megan needed to have more nutrients than she was getting from her safe food diet. In this way Shona was proving to anyone who understood autism without the ableism- that she was working with the professionals and with Megan’s wellbeing and health in mind. This was Shona clearly showing she WAS doing her best to CARE for her child in a way her child could actually safely do. It’s not Shonas faults her expertise was ignored and vilified and that her cries for

Mercy were moulded into justifications for neglect. 


So sadly, the stigma and ableism won, and Shona, accused of neglect, lost the battle to care for her daughter Megan, and Megan was put into psychiatric care.


Megan has ARFID - she doesn’t have mental health issues and it appears like, if she could, she would eat. As someone who has ARFID too as a way to control horrific symptoms I totally relate. So if one way to eat was not accessible why wasn’t the other tube solutions considered? Why? Because ableism. In their eyes Shona was at fault because she should have force fed her child who she loves. Like it was mind over matter-but that’s not how ARFID  or autism or safe foods works.

It’s not a preference, you have to look at it like it’s an allergy- if we eat unsafe foods, we are in danger, even if it’s placebo danger the danger is still REAL.


They wouldn’t force someone who’s allergic to eat things they’re allergic to, yet because ARFID and autism is so misunderstood and stigmatised with ableism, no one understands just how severe this condition is.


So Shona was condemned for trying to help, and advocating strongly for the nasal feeding tube so her daughter could actually eat, and the professionals gained permission to take Megan away. They had a warrant to enter their home, swarming the house, hunting Megan down so they could take her away -which is terrifying for anyone but it’s especially horrifying when you know you’ve not only done nothing wrong but that you will get blamed and punished regardless of your innocence or efforts.


Naturally fight or flight kicked in and Megan ran and locked herself in the bathroom. 


Trying to  protect, Shona had asked everyone to back off from the bathroom as Megan was getting so distressed, they refused, so she had attempted to close the door a bit more for Megan’s privacy because Shona recognised her daughters cries and fears and realised She just needed time to process. CARE.

Shona, accused of refusing access from professionals, and neglect, was handcuffed, accused of assault, although Shona and her neighbour testify that in Shona distress she hadn’t realised the policeman was holding her when she had backed away, and that she most definitely didn’t assault anyone. It was again, misunderstanding and a power imbalance. 


There was screaming and tears and utter Trauma, considering they were there to help her, it sounds horrific was they endured as they tore Megan from her safe space and dragged her screaming and flinging herself at anything and everything in an attempt to not be taken from her safe spaces.


With no knowledge of where they took her, it eventually came out that they took Megan to a  Learning Disability Physch ward.  They refused access for visitation on account of Megan’s distress, however, naturally she was distressed because was in the Traumatic situation away from safe places and safe people. Not seeing her safe person would have made her more distressed, but with the stigma, the ableism and misunderstanding, the toxic assumption was that Shona was mistreating and shouldn’t be allowed visitation on account of her neglect, her apparent ‘aggression’ from

‘Assaulting’ the police officer  and ‘further distressing’. Anyone with understanding of the situation can see this is not the case at all. Visitation would have helped her daughter Megan, had she been allowed .


In the time she was to there (she’s still there) they pinned her to the bed and sedated her so she slept instead of showing autistic signs of distress, like meltdowns or overwhelm - which are natural reactions to injustice and inability to problem solve or find safety again - instead of safe spaces they drugged her and assaulted her.


When finally allowed visitation, Megan was covered in bruises - bruises caused by the professionals who ‘cared’ for her, that are apparently justified in an attempt to keep her safe. But ofcourse she would have been safer if effective training had been in place to allow true empowerment of autistic people outside of their safe places, and if access to safe people had been approved. Ofcourse it’s complicated, and Shona was accused of neglect but this is entirely why the entire system needs reworking to be more autism friendly and truly understand what helps. 


As someone who has an eating disorder based on ‘coping’ with symptoms stress and trauma, even the professionals with all their attempts and questionable methods couldn’t get Megan to eat or drink. Suddenly, it’s becoming more and more obvious that Shona was not in fact neglecting her daughter, but finding anyway in which to help her by advocating so strongly for nasal feeding. 

They won’t allow access to safe food because ableism and total annihilation of human rights… yet, Shona is still condemned with neglect. 



Megan is still in this horrific place and still not eating or drinking - because she CANT. Not won’t.


Autism inclusive meets charity say:

She is going to die in there. 


Please sign and share this petition everywhere. The way the William Fraser Centre are treating Megan is inhumane, it's cruel.


 Shona has been given no paperwork and has no idea how long Megan is to be kept locked up for.


Please see this link:


"Weʼre raising £1,000 to Pay for an ARFID expert to offer advice on the best way to support a young lady currently sectioned, and possible legal representation".



Let's get Megan out!



…’



ARFID eating disorders.


People think eating disorders only impact (stereotypically young teen girls)who are skeletal and thin and don’t eat. 


There’s a lot of misconceptions. Anyone can have an. Eating disorder. You can be over weight and have an eating disorder, a man, a child, an elderly person, an adult, disabled or chronically ill, eating disorders do not discriminate because they are not all rooted in ‘losing weight’ for whatever reason.


I have had a ED for most of my teenaged and adult life – depending on what separate illnesses or diseases I have at the time (I have ongoing thyroid, adrenal and renal issues that have so far require 8 major surgeries – all of which Ive been in remission for – which is when my ED often goes away- and all of which have come back (which is meant to be medically impossible, each time, but my case is pretty rare)- which is when my ED often comes back too, as a way of symptom management).

 

In this way -  My ED is caused by my attempt at managing my pain and sickness, caused by foods and illnesses or diseases I had at the time. I am chronically ill disabled person, and I have many cooccurring illnesses and disabilities alongside thyroid issues.The problem for me was that everything I ate – no matter how specialised healthy or small in portion, was agonisingly painful and sickening disabling to digest, so much so that Id be experiencing heart attack like symptoms every night from rare symptoms of severe acid reflux and also be lying on the floor at night, expecting at any moment to vomit or poo – but nothing ever happening. Naturally, this meant that, I did what any person would do when experiencing great pain and sickness, caused by a specific root – and I avoid that root, to avoid the pain. So, I avoided eating, or the food would come up again – either intentionally, or not, as an effort to manage the disgusting nausea, sickness, pain and heart attack like symptom's I was facing every day. It got to a point where everything I ate had to come up, and I would lose several stone in a month or two – barely stomaching an apple or two a week. This ED comes and go, with illness and disease, and change in medication. Yet the root has always been the same – I have had never had any intention of losing weight or any body image issues – I actually have always loved my body being a bit fatter – Ive always been a very mindful and happy with myself person– but I was desperate – and faced with no support where I needed it – and especially no understanding of the cause of my ED – I did desperate things – often too ill to realise I was making myself sick in a different way. Naturally, people saw my ED and assumed I had to eat more, often forcing it - where as this actively made me sicker, because it was the food that I couldn’t safely digest. People tried to make me realise I was beautiful as I was etc, not realising I had no issues about this – I couldn’t care less, even if I was fat or ugly – that stuff doesn’t really bother me because I know I'm always trying my best, and I know most body image ED isn't really routed in vanity, but I’m also not really a vain person, who would actually go to such lengths to change anything that I don’t need to change. Once it became apparent the food itself was the issue, my undiagnosed medical issues came to light, and we realised the cause was my IBS and Gerd etc- so once we fixed the root, food became edible again and my ED would improve, if not, vanish – because I no longer had to manage symptoms with an ED.  


It turns out, I had ARFID and didn’t realise it. 





  I believe that not all eating disorders are rooted in ‘coping’, however, similarly, they may be used, more precisely as a defence mechanism, that has been taught to them from a misunderstanding gaslighting society, as a form of self improvement, where all else ‘fails’ which could be seen as coping. Otherwise I also believe that for many Autistic people, ED could also be born, more specifically as symptom management, due to cooccurring conditions more specific to Autistic people (GERD, IBS, constipation, sensory, digestive issues, etc) which indeed, could also be seen as ‘coping’. 

These are eating disorders, and still as severe, even though the root cause is not the same as other eating disorders. The truth is that fault and blame have no place in eating disorders, only root cause's; even in cases of control, the person is still a person who has an eating disorder problem they are not a problem.


So what does the term ‘safe foods’ even mean?

How can a food that IS safe… NOT be safe? To so many, this safe food term is merely a way of controlling or demand avoidance and other negative annotations that have nothing to do with reality.


From this common misunderstanding and narrow mindedness to even consider an alternate perspective, comes the common denominating misconception that is loaded worth ableism and stigma-

“They’ll eat if they were hungry… “ well, no, autistic people wouldn’t ‘just eat’ an unsafe food, because they may not even perceive the food to be safe AT ALL. It’s literally not even an option to consider and any attempts at ‘helping’ are met as a perceived injustice, bringing about injustice meltdowns shutdown and overwhelm. 


They’ll eat when they’re hungry ‘ won’t work specifically because it’s not a choice.

Yet very few understand that and victim blame instead of learning the roots of why these issues occur- but that’s exactly why we should understand what safe foods really are -because until as a society we do, society will continue to trap autistic people in a vicious circle that can never help or be healthy, but will likely Traumatise or traumatise us and maybe even put us in active danger too.


‘Safe’ in this manner, means practised to perfection for sensory, comfort & symptomatic issues or gastric issues-anything new or unfamiliar, has potential to not be ‘safe’ in this way.

danger! 


‘Safe’ for sensory issues has to be imagined like if you were to eat a food that was scolding hot - that will burn you for weeks after - it’s not just a now issue to be considered - it’s the after math that creates more issues with overwhelm and injustice. If you were constantly Traumatised by life’s baseline you’d be looking for ways to lower the overwhelm and trauma too, so how are we judged so harshly for avoiding unsafe foods? Anyone else would do the same if they thought a food unsafe on a subconscious level .You need to imagine  you are eating food you are not only allergic to but is actually like swallowing buzzing flying wasps that will sting you, and tickle, and buzz and hit you and just YUCK. Imagine the hours or days in recovery to. Imagine all the priorities and routines you’d have to avoid to recover and cope with this new thing. A new thing that is avoidable while also Perceived as the safer option. Sure, how can eating something that isnt a chicken nugget(for example), like eating wasps? It’s not for us to judge-it’s for us to accept and empower safely, even if we don’t understand. Just because we perceive sensory issues differently doesn’t mean they are not valid reasons. Texture can be processed very differently to others, and it’s not our fault.


Change to safe foods and no access to safe food  along. With the misconceptions ableism and stigma can present challenges for anyone Autistic, who has specific eating patterns & who reacts strongly to foods due to sensory issues of taste, texture & smell, or even color. Especially because of how we process information - fact - then memory. The fact is processed that a new food is not safe and then that memory gets stored in our memory as a fact, to be perceived in the future it’s a s real to us because of our processing as it is for any other person who would look at a live feathery, clucking chicken and think “don’t be silly I can’t eat that right this second! It’s not safe!”


Imagine someone pressuring you to eat an uncooked raw meat- you suspect you’ll get food poisoning but they’re pressuring & gaslighting as if your concerns aren’t real? How do you feel? Do you eat it & face the consequences? Communicate your feelings & hope they’ll understand? 


Imagine you eat it, and you feel awful - symptoms and overwhelm distress at perceiving the injustice and lack of safety means all future attempts at eating other foods are also tainted by this experience of Trauma, processing that safety with adrenaline overwhelm and fight or flight where the reaction becomes ‘no, it’s not safe’.

Just like anyone else who was forced to eat a live chicken covered in few feathers would also be Traumatised and avoid it at all costs. 


Just because most people can perceive that generally edible and generally recognisable safe foods, are in fact SAFE, doesn’t mean that everyone perceives and processes in the same way . Autistic people especially process and perceive those technically safe food as NOT SAFE, and that’s not their faults.


Imagine then, communicating you dislike or don’t trust this food & now think about how that must feel to STILL be forced to eat, because the ‘problem’ is seen as your own.


These issues are real to us - and if they are real to us they should be treated as such - REAL TO EVERYONE. We  may feel unsafe with change & new food. That feeling is not imaginary or easily controlled! Imagine, now being autistic , where the consequence could be very damaging indeed- gastric agony, shutdown, injustice meltdown or general exhaustion? It’s not very safe or pleasant, I can assure you.


💫How you can help: Recognize that Autistic people may have specific needs & requirements relating to food, whether that is due to intolerance, sensory issues or genuine dislike. Accept it’s not us being difficult or ‘not being festive’. Recognise we are not doing anything wrong with trying to communicate this genuine fear & discomfort we have.


💫avoid forcing us to “try something new” or make us eat anything we don’t want to at a time we cannot. 


💫Think about how you would feel if someone tried to get you to eat a food that you think is dangerous.


For me, if eating something new & scary could possibly mean I can NOT do important things later, (because I’m on the loo for hours, or in bed shutdown, or crying under a table somewhere) then I won’t eat it- but people don’t always understand this level of reasoning in autistic people. We are trying!


💫Try to understand that we’re not being difficult or challenging anyone — we’re in genuine distress. If an Autistic person says “no” to something, respect that choice. Try to understand it’s root & challenge your perceptions of why we said ‘no’. Then, respect our lack of consent, to put ‘unsafe’ food into OUR bodies. 


💫Then, in times of new places and change of what access you have try to incorporate foods & meals into the diet or routine that will provide some semblance of normality & a sense of place.


TW eating disorder and road to recovery.

Sometimes we fall into society’s trap of perfected beauty and we judge ourselves harshly or measure our worth with numbers.

Whether it’s numbers in our salary, numbers of friends, numbers of material items, or numbers of people we’ve helped, we measure our worth based on things that have no real calculated measure about what our worth even is - we are worthy because we are human - not because of the numbers that society convinced us matter. Sadly, it can be dangerous to measure your worth against numbers, and sometimes it can be numbers on our weighing scales too.


I’m guilty of it too- I’ve measured my worth, or my value, based on the number size of the clothing I wore, by the number of times I’d laid in bed unable to move or eat, the number of times I’d have to skip a meal. Not enough to develop an eating disorder because I still ate as normal (and the root was not in losing weight etc) It was enough to make me question myself. Now I know that my worth is immeasurable -and so is yours.


Recently, I allowed myself to recover- I’m eating normally-I put some weight back on drs are helping me eat food that my body can digest-dairy wheat gluten free, no snacking and smaller portions and plenty of fluids. I’m getting there.


They worked out what I couldn’t eat and found me safe food to eat.


As a disabled person I am often bed bound where I can’t move all day.  On these days, I can’t move to get to the kitchen or to make or prepare food. Access wise I need food that I can easily open, that can be left unrefirdgerated within reaching distance when I can barley move, and that will also be easy to eat and spoon when struggling to move, and also healthy and well balanced meal. For years I survived on nuts and dry cereal on these days bed bound, my only food I could access or eat, would be left in a bowl next to me, by my carer while they went to work.


If I was disabled in a way that makes be bed bound every day, you can imagine the harm this diet would have had. Likewise, with a broadening of horizons we could understand how few options there really are if the main options are refused or inaccessible. Then imagine, who would be blamed? Me? My carer who can’t access safe food? Or the professionals who should be making safe foods accessible? We all know who it should be down to, and yet due to stigma and ableism and. Victim blaming it isn’t. It’s utterly wrong my carer would get blamed for neglect because they can’t access any safer food for me to eat or digest in my most disabling hours of need. 


However I had access to carers who really tried and were successful in finding me alternates because they had access to. for example in order to eat, I need food pouches - pouches that are left in a cool dry place by my bed - that are long lasting (years and still fresh and as nutritious as the day they were cooked)  and nutritious and filling - that you can eat cold unheated and you can eat from the pouch with a spoon and that you can also easily rip open even with hands that don’t work- and tasty and healthy  too  with options that are like regular meals. Without access to these foods , would k also be condemned for not eating? Would my loved ones also be accused of neglect even if they couldn’t get in the flat to help me? No they certainly shouldn’t be, but we need to try to change the system that judges with such ableism, because often the root causes are so misunderstood and plagued by stigma that they don’t even realise the harm they cause or the stigma they perpetrate. If you’re interested in the food pouches - they changed my life and I love them!! The only thing is that they’re super low calorie which mean you do need to eat multiple pouches per meal to get a decent calorie intake for your own health. Here’s a link from my favourite plant based pouches on Amazon (a brand called FIID): https://amzn.eu/d/01SJpn9o


I have support and access to safe foods but I also have understanding and  people that found ways to feed me. For me, I’m privileged that a nasal feeding technique didn’t need to be considered. I don’t have massive texture issues for example and my safe foods are safe foods for different reasons- usually gluten or dairy free and pescatarian / vegan. 


The reality though? In slightly different circumstances I could be in a similar situation to Megan, and for someone who loves to eat and loves food and has no issue with my self worth or weight, it’s wild that I could be detained and abused because of something as simple as not being fed foods that are safe for me to eat. It’s even worse to imagine that the people who love me could also be punished and harshly judged simply for helping me access foods thatARE safe. 


The road to recovery isn’t easy, it isn’t straight... it’s a roller coaster with scary dips back into gloom with society’s perfect image calling me like a siren...

 Then with recovery, the roller coaster also soars high into clear blue skies, and reminds me of how beautiful life can be. When you recognise your worth.



I’ve finally realised I’m worth more than that now. I recently tried on an outfit that I loved, and panicked because it didn’t fit me. Instantly, my self worth diminished. Instantly, I told myself I was a failure because my body was growing, living, THRIVING. 


I was critical as I looked in my reflection. Then I remembered as I looked at my scars how much I’ve grown-how my body and mind has changed. Suddenly I saw my worth staring back at me. The hurdles I’ve jumped. The strength I’ve shown.


I looked in the mirror at my chubby bits and smiled-they’re me, they’re beautiful. My worth isn’t determined by my size, as long as I’m trying to be healthy and better myself.  And I am really trying. 


As humans, and in particular, as women, we seem to measure our worth based on a number.... our dress size, our weight, it’s  become like a second nature, driven into us by media and social ideas of ‘beauty’ and the roles we have as females.

.


If you have to measure yourself by a number, you may as well measure yourself by the number of times that you’ve cried from laughing. It might as well have been the amount of people you’ve made smile, by just being you.


We get to choose our worth. We have that ability. You’re worth more than society will ever give you credit for-it’s time you believe it. Love yourself and your worth!


If you have eating disorders too, please know that you have so much strength within you, so much resilience, peace and goodwill. Your worth is not based on your size. Even if you were ‘fat’ you can still be beautiful and the people who matter in life would adore you no matter your size… but it’s not that simple as knowing that fact, is it? So I digress. I hope you see your worth and find healthier coping mechanisms before you lose sight of your inner beauty any more. You are worth so much more than suffering with an eating disorder. 


Please know that I love your strength to cope through these changes-even if you’re falling apart.

I love your endurance and determination to sacrifice for the greater good. 

I love you.


I wish you didn’t have to suffer, but I admire you.

You shouldn’t have to suffer to be loved, you shouldn’t have to put yourself through hardship to be loved, but you are loveable even so.


Megan is a girl like any other. She has safety nets, wishes and fears. She likely has a special item of clothing that makes her feel safe and a part of her life that helps her feel special. She probably has interests that she hyper focuses on and things that she wants to pursuit. She has hopes and dreams for her future, even if she may sometimes not see the reality that they can come true. She has special little things that only she remembers and unique tendencies that only she knows. She is a beautiful soul and a shining example of strength and resilience in a world where we absolutely should not be forced to be resilient. This is not her fault. we cannot let her down.


let us humanise the strangers we see- imagine their lives, their hardship, their dreams & goals. Their favourite place, their struggles their grief. Imagine their stories- & let it empower you to do whatever you safely can to save lives - campaign, sign petitions, donate to relevant charities and listen to people’s stories - and if you feel safe to, share your own. 


Together we are a team and we WILL make a difference, because together everyone achieves more. 


Peace x 


 






© Joely Williams 2020

Disclaimer

I refer to myself as a professional; however, this is due to my experiences as an Autistic individual
and my experiences as an Autism Activist, advocate and child-carer / youth worker (20 and 10 years respectively);
not due to my qualifications. I hope to educate and inspire others with my inside knowledge.

I cannot guarantee any personal success, inner autism acceptance or results relating to progress as a result of my insights,

opinions, advocacy, books, workshops, speeches or 121 sessions, and I will not be held responsible for any lack of success or progress.

My services, whether they be speaking, workshops, 121 or advocacy, should not be a replacement for professional diagnosis,

medication, or therapy. Safety measures and action plans have been tailored to the event or necessity, however, anyone

participating in my workshops or training sessions are doing so at their own risk, I do not and cannot take any responsibility

for any damage to person or products / equipment. Professionals, such as teachers, doctors and therapist should be consulted before

any life style changes are made. Everything within these training sessions, are designed and written from my experiences

and my own personal opinions, and what works for me, may not work for everyone else, and I cannot take responsibility for this.
 

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