This is our journey so far…

Amadeus is a 13 month old standard poodle who is my psychiatric assistance dog and he is helping me gain some independence, access to the outside world, exercise and he also gives me things I can not get from human interaction. The conditions and illnesses which Amadeus aids me with are Complex Post Traumatic Stress Disorder, Agoraphobia, Generalised Anxiety Disorder, Borderline Personality Disorder, Psychotic Depression, Obsessive Compulsive Disorder, and Autistic Spectrum Disorder.

The requirement for me to have an assistance dog was in fact my last hope in having a more fulfilled life, in this able focused and neuro-typical world. Due to sever mental illnesses I have been unable to lead a “normal” life for over 11 years and some things have never been achievable.

When using the word “normal”, I use it in the sense that many things achieved by able people are taken for granted, such as being able to leave your home with ease everyday, crossing roads, being outside independently, going into shops and other establishments, speaking to strangers or service people, taking public transport, being able to drive, listening to music on headphones, meeting friends, going to hospital/doctor appointments…

the list goes on…

Very kindly a close friend of mine started a GoFundMe page and raised enough money for me to get Amadeus and all the things we needed to get the show on the road. People from all over the world donated and before I knew it, we were taking Amadeus home and the rest is history.

So in under a year I have achieved a great deal with Amadeus; starting with simply stepping outside my front door with him and closing the doors behind us whilst no one else was home – this was my first and most challenging of exercises.

Then we walked up the road and started with the closest cul-de-sac, completing this for up to two weeks at a time, then moving onto the next. Eventually mastering  three and staying in this comfort zone until I was ready to go past a busy pub and cross a small road by a large cul-de-sac. By this point I genuinely was astonished by my progress and felt a sense of freedom which would make me promise myself to never let go or go back – a lot of pressure but I have no “happy” medium abilities, it is black and white or nothing.

After this achievement my sights were set on going further up our road to a small green in front of an old Victorian prison, knowing this would be ideal for Amadeus to do his business and for me to be near some kind of nature – with trees and grass (even though it is next to a main road and very busy roundabout). This feat was very challenging, managing to do this once a week and slowly progressing to be able to do it more regularly over several weeks, before committing this as the place we would walk everyday.

By this point Amadeus was getting to be almost one and a feeling of rebirth flowed through my veins. So one day impulsively I decided to go the other way from my front gate, up the road and over a busy bridge to the cemetery behind my house, as this was something I could do without crossing any main roads  – plus it would give me an abundance of nature, things to look at and a longer walk for Amadeus.

We did it!

However this was impulsively done which was me jumping up my ladder and not safely stepping up one rung at a time, which is a trait due to my Borderline Personality Disorder (BPD). This meant I was wiped out for almost two weeks due to the exhaustion of doing something so outside of my comfort zone, which of course made me have sever anxiety symptoms – even though at the time it was enjoyable, but when you get the same adrenaline from walking up the road to a cemetery as someone bungy jumping or sky diving – it can be a really surreal feeling.

My next challenge is crossing a main road in front of my house which luckily has a pedestrian crossing and then walking straight down small residential roads to a beautiful pond and recreational field. My plan is to try and achieve this, this summer, which will be my greatest achievement so far. Amadeus will be able to go off lead in the field, we can walk around the pond, watch the wildlife, sit and read or listen to music; it is something I dream about constantly.

Even though this has changed my life, there are still days I can not go out, there are days when being outside is like being assaulted by every piece of sensory information at once, leaving me unable to process details and all I can do is rest and recover.

So if you have never thought of how privileged you are to leave your home in a carefree manner and when interacting with the outside world and its tasks it is no big deal to you; then I challenge you to think of what your life would be like if you were unable to do these things?

 


As a small art project I documented my journey so far with Amadeus and distorted the images to show the different sensory issues I encounter when outside. This was challenging as simply taking the photos by busy roads was disorientating, however with Amadeus keeping me grounded and helping me feel present and real I was able to do a lot more than I thought I would. There is a slide show, all images underneath and some videos.

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Last Friday I woke up in my usual state of anxiety and dissociation, having spent what seemed like a life time of nightmares that night – when I had finally focused my mind on the day ahead my heart felt heavy and my mind was attentive to the fact I am infertile due to many factors and can not receive fertility treatment or adopt. The root of my issue is that I suffer from polycystic ovarian syndrome (PCOS), which developed in my early twenties after battling with anorexia and bulimia chronically for 8 years resulting in hospital treatment, ignoring my diagnosis due to embarrassment – as it made me feel a lack of control over my body my condition worsened. Having battled (and still battling) disorder eating and withholding food this news made me feel “fat and lazy” especially upon reading the information available on my illness – the stigma associated with PCOS is shocking, the symptoms of high testosterone in my body made me feel embarrassed as I started to grow unwanted hair – my self esteem was already in tatters so this was the last straw. Due to ignoring this diagnosis I developed type 2 diabetes just before I turned 30 and then my life as a woman trying to conceive changed forever.

Whilst feeling severely depressed and alone at the end of last week,  I turned (like many people) to a support group on Facebook called PCOS Tribe UK which having been a member for a while even though I had never posted, seemed a great place to find some support, so whilst shaking with adrenaline and seeing lights flickering over my eyes I wrote a post:

 

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I understand this was a very vague post, but not knowing how or what to say this felt like a way to open the conversation up as I was feeling so unable in myself and struggling with communication. Within seconds I received a reply and was hopeful that it would lead to some support and empathy with people who were also experiencing these difficult things. At first all seemed good I received this:

(For the privacy of these women I have made their identities unknown – as this is a private group and I would not wish their personal medical circumstances to be displayed without their consent.)

 

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Upon receiving this initial comment I felt a sense of relief that a dialogue had opened up with someone on this subject, also very much appreciating the:

“but maybe your circumstances are different than mine”

This felt like my opportunity to explain my situation further. Before I could even contemplate what to write the sound of notifications rang in my ears as my phone received new replies and comments on my post. Quickly my relief turned into more anxiety and my mind started to fog, the lights got brighter and my body and mind were sending me clear signals that I was under attack, so the defences went up.

 

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The first reply here is patronising and assumes they know my circumstances before I have even had a chance to explain and as I am sure you can read, her sweeping of my differing circumstances under the rug is in fact very silencing. Assuming we have been through the same thing is also a very big mistake when discussing these issues – I appreciate what she was possibly trying to do, but it was misjudged, so whilst trying to find a way to eloquently reply, of course the other lady was still being very kind and empathetic, which made me continue:

 

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On another screen on my phone I was desperately trying to write a reply which stated the reasons to which personally conceiving a baby is just not in my future, wanting to explain why fertility treatment has been denied to me on the NHS and why adoption is impossible when you have sever psychiatric disorders and physical disabilities, but the notifications kept coming and my anxiety as well as impulse control was pushing at my temples, making me feel obsessive and compulsive with rapid thoughts misfiring, it was painful physically as well as emotionally overpowering.

 

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As you can see my response is short and frustrated, it may have come across rude, but I have not got the same social abilities as “neurotypical” people, so direct is how I communicate especially when under pressure. The women were of course still trying to be helpful and there is no doubt in my mind that they were offering this advice in kindness. However so much of this is misguided, privileged and ableist as well as factually incorrect. Women kept stating to me that the ONLY way you could be certain you were completely unable to conceive is if all your female reproductive organs had been removed? This of course is not at all correct as there are many reasons why a woman can not conceive from physical illnesses as well as socio-economic reasons. Also as a woman who can’t have children it is never helpful to have other women push their success and fertility down your throat when they have not afforded you the time and courtesy to explain exactly why your inability to have children is a fact.

 

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(the reason that my image and name is blanked out is because these were taken on the group (PCOS Tribe UK) owner’s phone/computer and were put up on her Facebook profile – which I saved as I was removed from the group before I got to screen shot everything, may I add this is the only one she blanked my name and picture from, all the rest disclosed who I was in a public setting disclosing my infertility and medical issues)

This particular screen shot and comment of me hurt and made me feel mocked and dismissed. Apparently it was only acceptable of me to take advice on trying to conceive, NOT acceptable however to seek help in accepting that I shall not get the chance to have children due to my health and circumstances. Is it so wrong to have tried everything in your capabilities to conceive and seek help but still be denied or unsuccessful and then seek help in the acceptance of this? The only reason I came to the group was to seek help from women who for whatever reason could not have children – never thinking that I would be shamed for seeking this. It felt like for this woman, me seeking acceptance and help with this was an attack on her or the “wrong” thing to do as a woman.

My responses were apparently not acceptable and deemed abusive. But it was acceptable to suggest to me that I ask a friend who may wish to have an abortion if she would carry her child fall term for me to adopt?

The bombardment continued:

 

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I was abrupt – yes! But rude – no, you can see I am trying to explain myself and my disabilities but it is going so fast. Still desperately writing my explanation on another screen hoping that when these women understand my position they will know I was not being rude. By now the tears have begun to fall and my mind is experiencing tunnel vision.

Then the lady who replied to me first – who was kind and empathetic posted a comment, unfortunately I wasn’t able to send my reply as the admin had stopped all comments, as you can see from the red alert. I wanted to thank this lady for her kindness. And was still trying to reply to her first comment and explain myself.:

 

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Desperately I said several times on peoples replies “I am neuro-divegent” or “I have neurological damage I can’t process information that quickly”, hoping this would alert admins to my situation, hoping for some assistance but unfortunately I got this final reply from an admin and then was removed from the group:

 

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The decision and action taken by the groups owner and admins, was so upsetting, in disbelief of my removal I started a new explanation and wanted to post it on the groups wall to explain myself in the hope admin would see their error of silencing a woman just seeking support who couldn’t keep up and explain themselves in time due to their neurodiversity and disabilities. The other issue which caused me great distress is the fact the admins saw me pleading in regards to my disabilities and my inability to process this information and communicate at the speed neuro-typical people do. That instead of making this group and support accessible to me they deemed me a trouble maker who had only come to this group to cause arguments? Which may I add is an odd conclusion to make so abruptly and without hearing me out – however as a person who suffers from mental illness I am used to this kind of stigma. So I screen shot the reply I was trying to write which is when Facebook told me I was not able to post in the group anymore (hence why it is faded):

 

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But this was never seen and that was it I was banished. Left crying and feeling even more alone – like a freak, a troublemaker. Seeking some help as I was feeling very vulnerable and out of control and as someone who can not leave the house most of the time – panic set in and the fear of having a psychotic episode which could lead me to hurt myself was terrifying. Whilst trying to focus I reached out to my FB friends, family and followers as they are such wonderful supportive allies and know my situation, I wrote this:

 

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As soon as this status went public I started to receive friend requests and message requests from several different women, naively I thought they were sending me these requests to support me after what had happened. Unfortunately I was mistaken, the owner of the group was the first and as soon as I accepted her friend request she commented on my status:

(As this is a public post and this woman “Jane Mann” wrote this on my public post on my public profile no ones identity has been blanked out.)

 

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As you can read “Jane Mann” still misses the point entirely and still thinks it is acceptable to treat me this way and wishes to silence me further, and does not accept any criticism of her group. As this is on my profile my friends, family and followers become very protective of me and help tell Jane to back off. I then block Jane.

More women sent me (and anyone who commented on my status) abuse and friend requests, after this one of my friends sends Jane a message telling her in no uncertain terms to leave me alone – I did not ask for this to be done (although very grateful) however I do not know what Jane Mann expected when she made herself public on my profile.

Then the messages begun – I did not accept most of the requests however I did with this lady:

 

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As you can read she is very angry with me and my situation. This woman thinks I should be able to disclose my disabilities up front with no issue and if not – then that is my fault, which is of course a very able privileged view point. Also stating that because I had not posted before that this meant I was suspicious? She also questions if this (wanting to conceive and raise children of my own) is actually something I truly want, because I didn’t just shut up and accept advice which was actually not relevant to me as I CAN NOT CONCEIVE, but was never given enough time to explain exactly why this is so! Also she suggests I am a liar because I said these women “attacked” me, but doesn’t understand that feeling attacked by a large number of women overwhelming me with information at an unrealistic speed for me to keep up with is also a valid description of being “attacked” they of course did not pounce on me literally they attacked me figuratively through their ableism and dismissing my disabilities. I felt attacked! This very angry woman also says “if you had posted correctly” then apparently I would have been helped, I was unaware that there was a correct way to post – if I had known I certainly would have not joined the group or posted as this is too restrictive for me and confusing. As stated before – that morning there was no way in which I was able to write a long post explaining every detail of my infertility, physical and mental illnesses, disabilities, neuro-diversity and circumstances, not only because I was unwell but also due to the unwanted stigma that my circumstances can cause. Also her focus is on the number of women, I said “about 15” – for me this included all responses however I may have counted some people twice due to certain people posting more than once, in the confusion this is very possible – a valid argument against me – no!

This got nastier and nastier as this woman messaged everyone who had commented on my status or liked it – harassing people all because of this situation. Then this woman took it upon herself to go to my non-profit /charity organisation FB page Art Saves Lives International (ASLI) and do this:

 

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(since this attack either the woman or Facebook have removed this review)

 

Not only was this a step too far and nothing to do with ASLI as I was never in the group PCOS Tribe UK representing ASLI – I was there as Charlotte Farhan. This went on and on and she disclosed my infertility and medical issues here on this page. Not my public profile which anyone can access – not my public art page on Facebook which is just me. No this woman attacked this page and gave a fake review of an organisation which she had never heard of, all because I was unable to explain my disabilities and circumstances in the PCOS Tribe UK group in a satisfactory and speedily manner in order to receive advice I did not ask for or need by ableist privileged women.

My friend and a member of the ASLI team received a threat of physical harm and her art page on Facebook was attacked by these women:

 

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I received more the next day:

 

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Then my husband was alerted to Jane Mann (the owner of PCOS Tribe UK) sharing my information on her private profile as well as allowing people to discriminate against me and a friend after my mental illnesses and disabilities had been confirmed, this was in an album on her profile named “Evidence” along with screen shots of me in the private group disclosing all my issues:

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Calling us mentally unstable – which myself and my friend who sent Jane Mann a message (no one else did) are, as we have sever mental illness, which we stated – ridiculing us is ableism.

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Calling me a psycho – ableism and stigmatising against my very real and debilitating psychiatric illness.

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Yes we do! We don’t get it due to the state of the mental health care in the UK on the NHS. This is an ableist slur and stating how it is sad we need help is stigmatising and discriminatory.

None of this needed to happen, this was avoidable and hopefully these women – especially the owner and admins will learn how they need to check their privilege, especially their able privilege as well as understanding that fertility is not only to do with your reproductive organs, that there are many women like me who are given a small window until they reach 35 (depending on their area) who if they do not fit the correct criteria are denied fertility treatment. For me due to my 5ft 11inch frame and difficulties getting down to an unrealistic BMI in under 2 years when my diabetes was so out of control due to my  pancreas shutting down – was just not possible. Then the women would say “well get a second opinion, see a fertility specialist, get fertility treatment”, which my husband and I can not afford as we are a one income household as I can not earn money due to my disabilities and we have very bad credit. As for adoption – well I do not meet the standards as my disabilities and mental illness would mean (by their assessment) that I could not adequately care for a child. I do not dispute this as I am unable to care for myself.

Due to these factors my goal now is acceptance and realising that life without children can be fulfilling and meaningful, at the time I realise grieving for what will never be is essential. My husband and I have already lost a pregnancy when i was 26 years old – just after our first scan.

There is no malice in this article just awareness and my experience being put forward, hoping that this will mean other women like me will not be silenced or shut out because they do not fit into the socially constructed ideal of being a woman and having children. I would like to thank the women who came forward to me from the group PCOS Tribe UK who offered me support and help even though they were scared of the group owner and admin removing them, there were 5 women but two wrote sensitive information which may disclose their identities so I chose not to put them here:

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*Revision – I would like to clarify that I do NOT deem all members of this group as ableist, privileged or patronising. I am only referring to the members I had experiences with which were ableist and privileged. I am certain that this group is full of wonderful women from all different perspectives and circumstances, my issue is only with the page owner, admins and the members who attacked me after being removed. I know most women who commented meant well and did not understand my situation due to my vague post. I have not written this article to detract from the “good work” this group does for other vulnerable women, but felt it essential to put my experience across and since doing so have received a lot of feedback from women within the group and out of the group who have experienced similar issues in regards to my experiences and who have also experienced ableism. I wish all these women the best and hope they have happy healthy lives (even the owner, admins and members who harassed me after being removed). I hold no hate in my heart – I only wish to highlight the issues women like me with disabilities and who are neuro-diverse experience – my voice is valid and I shall not be silenced. 

For anyone reading this who is still unaware or confused about ableism or able privilege then here are some helpful links:

What is Ableism? Five Things About Ableism You Should Know

15 Crazy Examples Of Insanely Ableist Language

Stop Ableism Inc. / Arrêter L’Ableism Inc.

10 Ways to Avoid Everyday Ableism

DISABLED WOMEN AND REPRODUCTIVE JUSTICE

Women and Girls with Disabilities

 

Thank you and if you have any comments of feedback please fill out this form:

Neuro-divergent me

 

There are parts of my brain,

people call sick,

inside things can’t configure – to the accepted standard.

There were times when fitting me into a box,

was a main concern.

Or blame – who’s left her out too long

too often, too little.

How about inside,

thoughts, dreams, the others in here?

Feelings which overwhelm,

sensory information begins to concentrate,

like compressed gas in a cylinder.

Pain is all that can be felt,

physical surges through my spinal cord,

to my brain – the host.

Being born with this disposition,

having an environment devastated.

Parents – the same chemistry

Clueless in their own damnation

However happily participating

in their haphazard irony.

Not typical, not normal,

they said and continue to claim.

“she’s weird, she doesn’t look me in the eye”

they whisper whilst backing away.

Thought of as rude, too direct,

judgements made habitually,

privileges left unchecked.

My cognition brought into question,

By those who never had to confabulate.

The world is not odd to me,

as it is all I can see,

you need to cure me.

Not trusting my words and memories,

abusing me,

leaving me.


when I close my eyes - by Charlotte Farhan
When I close my eyes – by Charlotte Farhan

 

Art and poetry by Charlotte Farhan.

If you would like to know more or have any questions please fill in this form:

Throughout my life, education has been a stressful task; which only until recently – the cause of this stress and mistreatment became clear to me.
My brain is not typical and the world is set to “typical” with regards to all its structures and functions, including education.
Of course back in the 1980s there was not much available for children such as myself, deemed hyper intelligent, difficult and rude as early as infant school, going to doctors and child psychologists and being told I was on the spectrum for autism. Then in secondary school – a troublemaker, a bad influence and having an attitude problem.
Teachers would always say “I don’t understand you Charlotte, you are so intelligent, why can’t you do better?”.
All that was known to me, was that no one understood me and that I was a bad child. Excelling in subjects which I liked and failing miserably in subjects I didn’t, not even bothering – feeling like it was all a waste of time and might as well be an alien language taught by aliens.
As well as this, authority in any form would be like a red rag to a bull, as if being challenged to a duel and the victor would get to parade the beheaded throughout the school as the all hailing champion.
So teachers would be shouted at by me and my “patronising” tone became a honed skill which many would misunderstand and still do to this day.
My moods became violent with students and teachers which cemented the “bad child” label as well as the “crazy girl” label I had acquired due to my mental illnesses spilling out of me from 11 years old onwards.
So “bad child – crazy girl” was my new official name and once carted off to the loony bin at 15 – this was really the pièce de résistance, which shoved me into the labeled box which society still confines me to today.
Bad Child - Crazy Girl By Charlotte Farhan
Bad Child – Crazy Girl By Charlotte Farhan
After hospital and then art college, I descended into two different states from 2001 – 2004, a reclusive agoraphobic who only went out at weekends on class A drugs.
Then in 2004 after failing an HND in travel and tourism, as instead of writing research pieces on travel destinations and tourism operating systems; I would end up submitting creative writing pieces in a drugged up haze, these were prescription drugs, anti-psychotics and mood stabilizers. Not surprisingly I was asked to leave, proceeding to obliterate my brain with class A drugs again and alcohol for 3 years, putting myself in many dangerous positions, surrounded by criminals; lucky to come out alive, some didn’t.
After this wasted time the choice to go back to college was a hard one, however deciding to work towards getting a degree was a dream of mine. Beginning with an A level in philosophy was my starting point, which opened my mind to so much, allowing me to see myself and the world in ways that to this day continue to shape me. My tutor was inspiring, he had so much passion for the subject. Philosophy was an ideal subject for me, it is not constrained by neurotypical ideas, in fact almost the opposite.
After completing this course I decided to go on to do a full time access course at The University of Portsmouth, which is a year long course – which is the equivalent of four A-levels.
Politics, Sociology, Communication Studies and History were my chosen subjects. The staff were so kind to me and even though I had less idea of my difficulties then, they helped me to achieve the best.
Two of these tutors are still my friends and this is a great achievement for me, having never been liked by teachers before. This was when my first realisation came about of the fact I was different to most students; the tutors helped me get registered as a disabled student and supported me to the best of their abilities, preparing me to go on to a degree at TUOP.
Gaining acceptances on three different degree courses, History, International Relations and Journalism, I chose Journalism. b4c71d9c06e71eb25c2c3ac1a80cc2ae
Once I left the comfort of the Access course, there was already a feeling that was reminiscent of school, the overlooked feeling, the feeling of being “odd” and “bad child – crazy girl” was tapping at my brain telling me she was needed, silencing her – these feelings were brushed away.
Within my first week a sinking feeling had taken over and the realisation that I would not see the end of the academic year or be successful was present.
The students were all 18 / 19 and being unable to communicate with any of them, becoming a loner, something which came naturally to me. The teachers already found me difficult due to me asking too many questions, challenging them as well as just being generally misunderstood.
One subject in particular was soul destroying; shorthand – my mental nemesis. The teacher was a strong, no bullshit woman, who displayed little empathy and did not distinguish any of us as adult students.
An abrasive tyrant and if you couldn’t keep up, tough luck!
This particular oppressor did not know her own privilege and she exerted it all over me, as if she was deliberately and provocatively dancing around me, forcing me to feel her neurotypical privilege, flaunting it.
Understandably due to this I could not grasp it and certainly could not keep up, with no study buddies and when asking for extra support I was met with a simple – no!
Desperately I sought out the advice of my personal tutor, explaining what had happened and that if given a level playing field I could do better, but he told me maybe it would be more suitable for me, if on another course.
With not much choice and being shoved out of journalism like an unwanted bag of rubbish I swapped to doing a degree in Spanish/Arabic and International Relations.
As a bilingual in French/English, spanish would not be too hard, and it wasn’t.
However International relations is where everything fell apart; as for the subject, distinction after distinction for my assignments was my average, however one day one of our lecture halls was filled with around 300 students, my anxiety came up into my mouth and after scurrying around and finding a seat at the back I sat there sweating, alone.
We were asked to form groups and that our next assignment would be a presentation. Of course having no friends and knowing there would be a “odd ones out” group, which the lecturer had to physically push a bunch of us together in; the undesirable leftovers.
Being the eldest you may think there would be an advantage, as the rest were kids, nonetheless they were even more socially inept than myself and clueless about the world. We didn’t speak one word to one another.
Nonetheless eager to not fail again, my only option was to visit my new tutor that week and explained that the presentation was something which my illnesses did not allow me to do without me becoming very unwell.
The usual story proceeded, “you are being difficult Charlotte” and being told to persevere. Following this my detachment kicked in like a superpower to protect me, becoming more and more dissociated . No longer able to go to the big lectures,  no more fighting for my rights, soon it felt like the university was digesting me whole, ready to evacuate me from its bowels at any given moment. Which was exactly what happened – I was called into to see one of the head tutors, naively thinking that they were going to put some things in place for me to better my student experience and chances.
Instead, a stern, unempathetic woman stood before me, who told me that my illnesses were too severe for the university to accommodate and the only option left was for me to leave the university and come back when I was better… Better??
This made me regress almost instantly to “bad child – crazy girl” becoming very angry and emotional, crying and shouting, the tutor looked scared and hesitantly told me how to complain if I disagreed – but for now in no uncertain terms – I was off the course.
Pleading with her, “there is no cure for my illnesses”, that this was something which is a chronic condition, complex and lifelong. In a frantic panic I went to see the university therapist, hoping that a trained professional would be able to help me and possibly convince the tutors they were wrong, in hindsight maybe this was not my smartest move. Crying like a child I stormed in – saying to the therapist that this was unacceptable treatment of the mentally ill and more detrimental to my health in the long run.
The therapist said my behaviour was erratic, highly emotional and threatening and due to this agreed with the university and said ” it is best you leave Charlotte, as there is nothing we can do for you here, you are too ill”.
As I walked out of the building my body felt weightless like a ghost, plans begun in the back of my mind on how I would kill myself that week, yet again the world had ejected me and given me no choice, possibly a sign of some sort, that there was no point to me.
However instead of taking my own life, a breakdown ensued which made me self medicate, eradicating reality was the only way to stop the pain and stay with my husband, the idea of being without him – alone in emptiness was far to much of a risk. Purgatory was a familiar place, like returning home.neurodiversity
Then after 5 months and being patched up with sticky tape and glue, my need to achieve a degree came back.
This time deciding to approach The Open University, as I had been told this would be more suitable for me, as a completely housebound individual – unable to leave the house on my own or be taken to a university and left to fend for myself until home time, home study seemed a perfect fit.
To my delight the OU had a degree course in philosophy and psychology, a part time, six year course for a BA (Hons) degree.
My first year flew by, confidence had returned.
By year two the OU had me registered as a disabled student and had a whole load of support offered to me. Everything was going great until we got to exams, which for 3 years the OU had failed to set up home exams overseen by an invigilator; this was finally sorted in my 4th year and helped me grately.
In 2014/15, year 5 – on my last psychology level 3 module, the game changed once again and experienced a very cruel tutor who decided my illness and personality were too difficult and just stopped offering me support, contrary to the guidelines set out, she even stopped answering my emails and queries regarding assignments.
You see the OU is done online, however we have tutorials in person at least once a month, online forum discussions and day schools, none of which I can access due to my disabilities, so once again a disadvantage, but add to this a tutor who decided they would go all incommunicado on me, I was left with no way of doing my degree.
After months of arguments and back and forth emails (as I can’t use the phone) finally someone understood the severity and that this was not a case of being difficult. The OU assigned a new tutor, however no extenuating circumstances were considered in my first 3 assignments which were done with no support whatsoever. One assignment the tutor had given me such a low grade due to the fact she believed my illness was too severe to be on the course and told me that my understanding was below the OU’s standard; stating my work was suddenly below level one standards, something of which the OU disagreed with, but it was a non substitutional assignment so apparently they could not change the mark?
This brought my whole grade average down below a pass by 2 points.
One assignment which was incorrectly marked due to prejudice and neurotypical privilege, as well as a totally disregard to the support plan set out before the tutor – I was given a 30% when all my other level 3 assignments were in the high 70% mark.
This was a disaster and led me to think of a new direction, deciding to finish my honours degree off by changing my two focuses, from majoring in philosophy and psychology, changing it to a minor in psychology and major in philosophy and creative writing; adding a year on to my studies.
Bringing us to now, my first year of my new course; creative writing.
And yet again my studies are subjected to neurotypical privilege and that “bad child – crazy girl” label and persona has reared her ugly head again.
Every time I explain to my current tutor about the neurological disorders which are my disability and that due to this am not able to access all of the course due to not being able to attend, he simply says “please fill out an extenuating circumstances form” or says ” I have to treat all students the same”. This led to me having a breakdown last week and to me writing an emotionally charged email to my tutor and student support.
My tutor just reiterated the same autopilot response.
However the student support team for the first time, got it!
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Screenshot of email received from student support at The Open University
The passages which made me feel validated and indicated real progress were these:
I am sorry that your experience of the OU has been frustrating at times. It is a tribute to your determination and academic ability that you have achieved so much despite your conditions and the neurotypical privilege that is present in all walks of life.
This should also give the tutor greater direction as to what they need to be able to do to help you study on a level playing field.
Finally some recognition for my struggles, some validation for the fact I am neurodiverse in a neurotypical world. This is of course not the end, but the fight which has been mine and so many others is finally getting somewhere.
A new awakening is happening and I sure as hell am ready to wake everyone up, no more being silent or being marginalised.
This mission is clear and as hard as it will be, there is no going back because giving me a voice is something “bad child – crazy girl” never had.
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