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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This art and poetry portrays the ordeal of intrusive thoughts which are brought on due to mental illness, specifically complex trauma, anxiety disorders, personality disorders and psychosis.
My intrusive thoughts have been dominating my life since I can remember. As young as 5 I recall laying in my bed and reasoning with myself, internally bargaining:
“If I die in my sleep, I wont know, I will just die and then it will be over”.
Scary things had always happened at night in my world, the dark couldn’t be trusted and nor could most adults.
As I got older my intrusive thoughts took on an internal shaming ritual, whereby ripping myself to shreds about how I looked, how I had acted or how no one loved me and I would be alone forever – hence why these thoughts turned suicidal. Repeating to myself again and again:
“you are fat, you are ugly”,
as if I were counting maniacal sheep – one named fat the other ugly.
Sometimes the thoughts can turn external and onto others, fearing you may hurt someone or even kill someone – not because you want to but because you fear you will lose your mind. I used to fear that one day whilst travelling to school or college that I would push someone onto the railway tracks. Visualising it was horrifying, playing it out scene for scene , watching others scream in horror and watching myself be carted away by the “men in white coats”.
With psychosis the intrusive thoughts are there but take on a hallucinogenic dimension. In the dark seeing evil angels looming over me or small fairy like creatures guiding me to safety, another world would open up – but what if I got trapped there? What if I wanted to stay? Reflections in mirrors can cause dysmorphic appearances, my eyes would disappear into my sockets, skin looked to be hanging off my face and seeing other people as myself.
Traumatic experiences cause flash backs which take you back to your trauma and hold you there in order to relive the ordeal again and again. Or you try and recreate the trauma and imagine a new ending – all the while punishing yourself internally, blaming yourself for what has happened to you or for what others have done to you.
Medication can help but it can be so much worse if you miss a dose or have to come off your meds for whatever reason, as well as very unpleasant side effects. There are so many drugs I have tried over the years and the ones that worked best were always the ones which left me like a zombie during the day, which is fine if you wish to be a zombie and there have been times this has suited me, to barely exist. However when you want to survive and possibly even live you can’t compromise on the “being awake” part.
The important thing to remember when dealing with intrusive thoughts or if a loved one is experiencing them, is to take this seriously – it is like any other health concern, such as finding a lump or a cough that just wont go away. Intrusive thoughts are an anxiety driven issue due to:
“THE AMYGDALA CONSTANTLY SENDING US FALSE SIGNALS THAT WE ARE IN DANGER”
Fight or flight is triggered with the obsession (the intrusive thoughts) and then the compulsion (is the bargaining – the fear) and the cycle repeats like groundhog day. Many people suffer in silence with these feelings and become trapped in their own isolation created due to living this way. So if you feel this is you or someone you know – please know first and foremost:
YOU ARE NOT ALONE!
There is support out there for you and your loved ones.
For the past 9 months or so I have been left untreated and unsupported by my GP surgery – which is Baffins Surgery Portsmouth and Solent NHS Trust as well as other departments. I used to have a family member who was able to take me to the many medical appointments a person like myself has, but unfortunately I no longer have this family member in my life and since then have been unable to access any care, appointments and clinics. This is because the NHS does not deem people like myself (mentally ill) to be housebound – even when they have conditions which specifically challenge their freedom to leave the house, to interact with people, to use the phone and lead independent lives. This is discrimination and against my human rights to access care.
I have asked my GP and Solent NHS Trust to help me again and again, it is not until I tweeted them in crisis (I am having a breakdown) that they have responded, and still now they keep offering me appointments which I can not get to.
Due to my conditions (which my surgery is well aware of as I have been in the mental health services since I was 12) I am unable to leave the house on my own (I have not done so for 10 years), a lot of the time I can not leave the house at all, I can not use the phone to call out or receive calls due to my disorders, my husband is my only family and he works during my GP’s surgery hours for appointments and telephone calls. When accompanied outside by a safe person, I can not order my own food, ask strangers for help or cross the road on my own. As well as this I experience sensory overload when outside, loud noises cause me physical pain, I am on high alert and most of the time can only deal with basic communication.
I have been told that people with mental illness can not qualify as being housebound, even though my conditions cause me to be this way, I was told there is nothing that can be done!
I do NOT accept this!
I need the Solent NHS Trust to help me so I can have the same human rights to care as others
I need a support worker to take me to all my medical appointments as well as the need for home visits from my GP for when I am unable to leave the house at all.
Since this happened I have been unable to continue my diabetic treatments, clinics and check ups as my surgery will not do home visits and all blood test clinics are in the morning when my husband is not available. So my diabetes could be getting worse I would have no way of knowing, until too late.
I am also unable to have fertility treatment as I am unable to get the help I need to qualify as I have PCOS and am now infertile.
I have something called chronic erythema nodosum which needs to be checked often to make sure I do not have any other illnesses associated with it.
I have arthritis and it is getting worse I need help as sometimes I can not move due to the sever pain in my ankles, knees and wrists, I now have a walking cane.
As for my mental health, well this is the area I have been failed in since I was first in the adolescent mental health services at 12. I have endured mistreatment from many practitioners, including victim blaming, sexual assault in a psychiatric facility at 15, by two male in patients, I have been told I am “too intelligent” to receive care, “too high functioning” and I have been stigmatised for having borderline personality disorder by many practitioners who have deemed me manipulative or attention seeking, when in fact I was in crisis. I have been left with no help or they have tried to section me, there is no in between. I was put on anti-psychotics at 15 years old and was like a zombie for most of my late teens and early twenties. I have been offered treatments which I can not get to, or things which would cause my other conditions to be triggered. I have had no treatment for my C-PTSD except for a un-completed 6 week session of reliving therapy (as my therapist left) which has left me open and more unwell than before, causing my psychotic depression to flair up and experience psychosis regularly. I was put on anti-anxiety medication as I have so many anxiety disorders and then due to not being able to be seen by a GP, the surgery put my medication up for review even though I could not attend an appointment, which meant my medication was stopped abruptly, giving me side affects to withdrawal – which has left me in constant fight or flight and suicidal. These conditions are chronic and serious and cause me to lead a very limited life.
I only have this energy because I decided to give this one last go – one last fight – before I give up. My husband has to deal with this on his own, he is terrified of what will happen to me, where is his support also?
I have been a victim to so much in my life, I suffered neglect and child abuse, a violent rape at 15, and being sexually assaulted by two male in-patients on separate occasions within the NHS Woodside psychiatric adolescent unit in Epsom in 1999 and these are just the worst events, I have suffered much more. But I survived these ordeals even though I am affected by them every day, especially living with C-PTSD, however I survived, all I ask is the chance to live, to have basic human rights, that the duty of care you have is observed when treating me and that I am not left to die!
I also know I am not alone, there are so many of us that are being failed and left to die, you don’t hear them because they have no voice, I also stand for them as I too have been silenced by this ableism, this marginalisation, this stigma and appalling treatment. The only reason I am able to fight is because I have a platform, so I am screaming as loud as I can with the hope you will hear me and help me, and furthermore with the hope you do not continue this lack of care with others, even though I am sure this will not change anything, maybe it will break the silence.
Someone will be creating a petition for me too, so I shall add this to the post when it is up and running.
I am also writing an official complaint to the NHS.
If you have a similar story to this or have anything you wish to add, I would love to hear from you, please fill in this form:
I am running out of steam, I am using every last bit of energy I have to fight for my life, this is the best I could do and is not a comprehensive detailed reflection of the abuse, stigma and human rights violations I have suffered from the NHS as a whole.
All I ask is you HEAR ME, BELIEVE ME and do this for me, for us.
Since opening my eyes to the injustices I face on a daily basis and deciding to speak out, stand up and create change, it has been a rude awakening with an upward struggle of epic proportions.
When you realise the discrimination which is faced by people like yourself, who have disabilities it is daunting to imagine ever overcoming the stigma. The world is slowly becoming more aware of the struggles many different people face with the accessibility to people’s lives through the internet allowing for us to see the most vulnerable amongst us as well as the most privileged. This revolution of information is empowering to certain minority groups and marginalised people, allowing us to have a voice and a platform to discuss things which have never truly been heard – on a mass scale.
There is still a massive issue with how people see disabilities and chronic illness, especially those which are “unseen”, such as mental illnesses, neurological conditions, autoimmune diseases, heart disease, diabetes, dementia, and even cancer, the list goes on…
The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. An individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.
For those who do not know, I have been diagnosed and living with disabilities most of my life, they are all “invisible”, even if not to me.
With such a long list of chronic illnesses and disabilities, I am considered complex and have as a consequence been treated as difficult or been left to fall through the cracks of the system, not fitting into a single box to receive medical care.
Due to this “able” world we live in – I can’t even access medical care as the NHS in England does not recognise my disabilities as housebound? Even though I have not been outside, alone, for over 9 years, and sometimes can’t leave my home even when assisted, meaning at this present time (as I have no way of getting to the doctors when they are open even if I was able to go out assisted) I have NO medical care whatsoever; my medication is up for review and because of my lack of access to the services, to get reviewed I am without any medication also.
Now tell me how a person like myself is to feel?
The strongest feelings which sore through me are that of being left to die, abandoned once again, rejected by the world, by society. Being considered “high functioning” is a joke when all this apparently translates to is that of knowing my rights and being aware of my own mistreatment; as it certainly does not mean I can “function”.
Friends and family often forget about these “invisible” disabilities, asking you to go places you can’t, or not making any effort in including you in plans as they assume there is no way for you to be accommodated. Being spoken about as if you were a child and unable to make your own choices on what is best for you. An enormous pet peeve of mine is being told:
“You seem fine”
“You seem better today”
“You seem so relaxed and calm”
Unfortunately these well meant sentiments are damaging, pushing us back down, or inwardly; left feeling even more misunderstood or under the microscope. Often the reality is you are NOT fine, relaxed or calm, it is just you have adapted your behaviour as best you can to not alienate yourself, or that the symptoms you have are internal and there is no way anyone would ever “see” them, however this does not mean they are not there. As for “you seem better today”, well this one is by far the most stigmatising and leads to the most misunderstandings.
So take note able people – yes, we have some good minutes, hours, days, weeks and some even have years, this does not mean we are “cured” or that we are “better”, it just means like everyone else we fluctuate in moods, hormones; and that life can treat us well or bad which can alleviate or compound our issues. This need of yours to tell us we are “looking better” may be well meaning but it is truly just a way for your privilege to further separate us, it is as though you felt happier that our disabilities are quiet and not present to you at that moment, making you assume you can tell us how we feel or what you hope us to feel. You do not do this because you wish to be unkind, in fact the motivation seems to be the opposite, however the affect these simple words jumbled into a sentences causes, is unimaginable to those who have not experienced this existence.
In order to “cope” or seem like I am “coping” sedation with drugs, such as painkillers or cannabis, allow me to shut down most of my thoughts and concentrate on being present with my friends and family for short periods of time which means being on a unrealistic high around most people, confusing the situation more, as you are never truly yourself. Many people like myself take drugs for pain relief or some kind of mind altering substance in order to “function” as best they can in company. Through societal pressures to conform, we do this more for you; the able ones. Many of us learn early on how we are received when we are “out there” with our disabilities on show – as much as you can when they are unseen. After being told we are attention seekers, drama queens, liabilities, hand-fulls, trouble, a worry, or after just losing people as they up and leave because you are “too hard work”; this is when the survival skills kick in, conformity becomes your best defence, until you are unable to maintain the facade and become the reclusive “weirdo” society deemed you to be all along.
There are so many things to discuss with regards to being in an able dominated world, with everyone’s story being different. These are my musings on the subject at this present time, with the hope to add more to this discussion. Since being rejected and my civil liberties being taken from me I have been awoken, my only chance to survive is to change this, is to stand up and scream at the top of my lungs;
“I will not go silently, you can’t erase me, I have rights and I shall be heard”
For all those who call me: “a victim who wears her disabilities as a badge of honour” you seem to be confused?
The way to survive after being a victim, marginalised, discriminated against and continuously pushed down is to play to your strengths and extend your hand to those who can not even do this, there is no shame in having been a victim or even if you are right now. Victim is NOT a dirty word! Chances are if you are a “victim” it means you have survived – you have faced something which unless experienced by others they will not understand, all experiences are unique and can be hard to understand even when you have the same disabilities – however checking your able privilege is not difficult it just means you must place your ego to one side and accept another humans experience.
Even though my fight may not always be as strong each day, as some days feeling defeated is all that can be felt, just breathing is too much to bear. The commitment inside me to this is my purpose for existing. Not being able to have children, with no blood family; this is my legacy, my nurturing, me giving of myself as selflessly as possible. This is my art, my activism, this is my life and not a “trend” or “fad” for you to disagree with.
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.
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.
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.
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!
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.
If you have any questions on this topic or about my journey, please fill in this contact form: