Ableism and Fertility – When online support groups turn against the vulnerable

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 – A Poem by Charlotte Farhan

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:

Ableism: when educating people on their own struggles is harmful

Ableism
This is not my usual post and contemplated not writing this at all, however the urge kept coming back and the reason for this was simple, I had been silenced and needed to be heard. Before I begin this is in no way a post to shame anyone, it is to highlight an issue which many do not take seriously as they are privileged in not experiencing the persecutions and discrimination that people such as myself have to endure most days.
There is this woman, called Laura who has a popular blog called Skinny And Single and she often writes day to day stuff. Her tag line is already problematic as it states:
 “Single and Over 40 and Not Suicidal About It”
Recently when reading her posts, which has been over the last few month I noticed her use of certain language, which was stigmatising towards mentally ill people and people with disabilities – as well as finding her writing exceptionally privileged, with little care for who she judges, belittles or creates further stigma for. Under the disguise of humour, with the attitude of “well it’s all OK if I didn’t really mean it” kind-a-thing. With a get out clause which seems to be a very “in” thing to do at the moment, which is to state, “I am just being honest or real” as if this were a license to cause harm wherever one wishes.
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After her most recent post “Seven People That Need Punched In The Crotch ” I decided to un-follow her blog and social media sites as I just didn’t like her style, judgement and writing, having tried to see the funny side but failing as her use of what she calls “satire” is not my understanding of it. Being French/British – in both my countries we relish in satirical humour which is a great way to poke fun at current affairs, it is by definition:
The use of humour, irony, exaggeration, or ridicule to expose and criticize people’s stupidity or vices, particularly in the context of contemporarypolitics and other topicalissues.
In England and France we use this humour to expose and ridicule the elites, those in power and the upper classes, and now celebrities; it is rarely used against people from minority groups. This is why when I saw her blog posts in our online community of #LinkYourLife I gave them a read before coming to these conclusions. This is what led me to contact her with my feedback as a mentally ill person, in a calm way – to maybe highlight something which she may not have realised was even in her writing.
I tweeted her and told her in a playful way:
“I am glad I am in the UK so you can’t punch me in the crotch”
thinking this would be a nice way to address the issue, trying to be humorous was my attempt at connecting on a level (especially on twitter with so few characters). The tweet didn’t really get me anywhere so thought to myself:
“just be direct Charlotte”
tweeting her again and telling her that she had used stigmatising language and I referenced her latest blog post and the last sentence; which needed addressing, where she stated:
“I am not a crack pot either. I am a regular woman,”
which was in reference to not being a feminist.
You can disagree with feminism all you wish, but the use of the word crackpot just left me feeling stigmatised, for I have been referred to as crackpot, and have been pushed down by so many with these kinds of words – ringing in my ears.
Ableism
In response to this she became very defensive and told me outright that this was not the case, she even had a friend join in who writes a blog on her issues with bipolar disorder, (someone who I thought would at least let me speak), but they both decided to educate me on how this language was not stigmatisation and that in fact, Laura does a lot to help people with mental illness.
Not me – but others.
This was very silencing for me – an actual mentally ill person, who has sever mental illness and has had this since being a child, I know first hand what discrimination against the mentally ill can feel like, having to fight for almost every right I have, and still my civil rights are very limited, with no earning privileges or work opportunities, no medical health care due to austerity in the UK and there not being the services, having to fight my way through education to get the same chance as other students, and these are just a few examples.
Laura, decided to bombard me with questions and was pressuring me to tell her exactly what it was she was doing wrong, the tweets felt like someone knocking loudly on my skull, I couldn’t think and twitter wanted me to write it to her in so few characters, the pressure mounted so high that I experienced sensory overload and had to lay down, before leaving my laptop, I tweeted her to say this had happened and that I would do my best to reply to her as quickly as possible.
Feeling so defeated by this I left it for a week before trying to respond to Laura with my rebuttal to her questions and stance. The following Friday the same post of hers came up in my news feed and reminded me that I had not replied to her and needed to. I tweeted her and explained my position.
She tweeted back:
“I don’t care and I feel sorry for you”
Wow! This hurt so much, I could feel the tears rising in my eyes and my throat got tight, my thoughts started racing and the anxiety hit me like a ton of bricks. Laura then decided to tell me that I did not know what ableism was?
She even sent me a handy Wikipedia link, this was devastating, again it was like she was reaching inside my throat and ripping out my vocal cords as she took my disabilities and used them to prop herself up and exert her privilege over me even more.
This woman does not know me, or what I suffer from, which are both physical and mental disabilities, as I have mobility issues as well as my mental health and neurological issues. This may have been an attempt to make me look stupid, as she had clearly just googled “ableism” and thought in this quick search that she knew all there was to know about the community of people including myself – fighting everyday to have our rights taken seriously and for the abusive language which has kept us as an under class in society for hundreds of years – to stop, making us untrustworthy, unemployable and so many more things which of course are not true and just discrimination.
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Ableism was first a movement for people who were discriminated against by able-people, this was just a “physical” thing at first, however as the community grew and became more aware of the discrimination people with mental illness and neurological conditions faced, the movement merged with what was known as sanism, so that there was no difference made between physical and mental as we try and educate people that mental/neurological, is also physical as it causes so many physical problems for its sufferers. With more and more research being done within these fields, we now know that physical differences can be seen in peoples brains who have mental illness as well as certain conditions such as PTSD (which I have) can cause physical pain, and is considered neurological damage.
This is why when she tried to educate me on my own discrimination it felt so isolating and cruel. There is no hate for Laura and her blog, all I wish she could have done is taken a moment to listen to me, understand where I was coming from and possibly check her own privilege over the matter.
Never would I tell someone to not post something, but rather to think before posting, and if you don’t care about upsetting the cause then own this too. Don’t pretend to be a champion for us when you stigmatise us with your own language.
All I had to do was un-follow and move on, however before moving on, my voice had to be heard and my cause had to be fought.
The last comments before she blocked me were that she felt sorry for me. Another terrible thing to say to someone with disabilities, in no way do I need anyone to feel sorry for me, especially when it is said with disdain.
All I and others want in our community is less discrimination, stigma, marginalisation and the chance to be the voice of our own lives.

As an example let us dissect what “crackpot” actually means and how it has been used against the mentally ill and those with neurological damage and injury.

‘crackpot’ is a shortened form of ‘cracked-pot’, which splits into its constituent parts, cracked and pot.

Cracked:

Cracked is itself a shortening of ‘brain-cracked’ (or cracked-brained’). ‘Cracked’ simply meant ‘impaired’; ‘faulty’. Both of these terms were current in the 17th century. For instance:

In John Canne’s A Necessity of Separation from the Church of England, 1634, we find:

If Mr. Bradshaw had found such a reason in Mr, Johnson’s writing, he would surely have called idle head, cracked-brained, fool etc.

Pot:

In the Middle Ages, ‘pot’ was used to mean ‘skull’ or ‘head’; for example, this piece from Guy de Chauliac’s translation of Grande Chirurgie, circa 1425:

Ye pot of ye heued

So, a ‘cracked pot’ was a ‘faulty head’ and crackpot is synonymous with our more recent terms ‘numbskull’, ‘blockhead’, ‘brain-dead’ etc.


Further Reading:

Here is some further information on the continued discrimination of the mentally ill depicted and perpetuated trough media:

 These key facts and statistics about mental health problems can help to challenge the myths that can contribute to the stigma that many people still face.

http://www.time-to-change.org.uk/mental-health-statistics-facts

And here is a great list of things which need to change and I suggest anyone who is unfamiliar with this movement and issue read this too:

https://mic.com/articles/121653/6-forms-of-ableism-we-need-to-retire-immediately#.LB7ZlAV1C

Upworthy-MEME

The right to vote is great; but how about the ability? Neurodiversity

Have you ever thought of the fact that the voting system is a neuro-typical system which alienates many different people with varying abilities.

I just want you to think about this….

If you don’t have to think of how you will be ABLE to vote, then this means you are privileged.

 

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Neurodiversity is a concept where neurological differences are to be recognised and respected as any other human variation. These differences can include those labelled with Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, Schizophrenia, Personality Disorders, Bipolar, Psychotic depression and others…

As you may already be aware if you follow my blog that I have several illnesses, disabilities and learning difficulties. As a child my neurology was always in question, with early indications of being on the spectrum as well as being a massive contradiction with a high functioning intelligence but also several learning difficulties such as not being able to read at the appropriate level for my age, having Dyscalculia and experiencing sensory overloads. My interpersonal skills were weak as eye contact was not a strong point and I did not understand boundaries like other children. When you are seen as high functioning people do not understand your difficulties as they judge and label you; lazy, disobedient, delinquent and a trouble maker.

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Read more about this HERE

Now lets get back to the topic at hand – voting.

Voting is a right which is great, many have fought to get this right from the white privileged male and won. However this does not mean that this RIGHT is made easy for everyone to obtain. My point is – many of us can’t even if we wanted to due to being neuro-divergent, disabled and ill; my issues impact all my voting options.

Lets me give you 3 examples on why it is impossible for me to vote in this neuro-typical system in the UK:

Voting in person: This is a NO for me due to my agoraphobia, C-PTSD, Psychotic depression, ADHD and OCD – the fear of people, open spaces, small spaces, germs etc… As well as experiencing extreme anxiety attacks and becoming detached and unable to hear and process information due to derealization and depersonalization Makes this scenario impossible for me to do.

Voting by proxy: This is impacted by my psychotic depression and Borderline Personality Disorder as my psychosis and delusional thinking, tells me this would be taken and used against me or that this is mind control. My mind become split and then I am trapped in a black and white world of confusion.

Voting by mail /online registration: When I am faced with forms I get something which is called sensory overload and sometimes it is so bad I pass out from it, plus I loose time regularly and get distracted on a loop for days sometimes due to ADHD. When I was able to have a social worker this would have been taken care of by them assisting me. However this service is not available to me anymore due to the area I live in.

If you would like to know more… follow this link HERE

“There is, however, an answer to this crisis.  The concept of neurodiversity provides a paradigm shift in how we think about mental functioning.  Instead of regarding large portions of the American public as suffering from deficit, disease, or dysfunction in their mental processing, neurodiversity suggests that we instead speak about differences in cognitive functioning.  Just as we talk about differences in bio-diversity and cultural diversity, we need to start using the same kind of thinking in talking about brain differences.”

(Source: http://www.institute4learning.com/neurodiversity.php)

 

Then there is the issue of voting in a system which denies your rights and leaves you to die as there is no help available, as I slip through the cracks with others; one wonders if these are cracks or specially designed filters.

Having been politically minded and active since a young age due to my French heritage and privileged education as a child and then going on to do politics, international relations and political philosophy at degree level, my awareness for the “political systems” has been of a high standard. Engaging with others to vote, political protesting, writing to MP’s and campaigning for civil rights was just the beginning in my 20’s, however as my situation grew more bleak and my interests in alternative politics and activism grew I decided after a long process to disengage with the “neuro-typical politics game” as well as the rigid patriarchal paradigm of “the ideal political structure”. Instead I concentrated on non-profit work, anarchism as a political philosophy and fighting each day to better the lives of people who are marginalised and stigmatised. This was my way of taking back the control which had been taken from me as a human being.

All I ask is that you think of this before you next judge the “non voter”, do not say things like “if you don’t vote, you can’t complain about anything after the fact” as this is a further way to silence the unheard, the people like me cast aside through no fault of our own, for things beyond our control. Try and remember that ticking a box does not give you the right to judge others, especially if this is all you are doing to create change, think of the varied ways that a citizen of this planet could help, or make a difference.

Also shaming people for not voting is ignorant, you know nothing of another persons life and why they may feel disenfranchised or due to socio-economic /class structures has been shown their voice means nothing or does not believe in the powers that be.

How about before you write your next FB status which tells people who do not vote they are stupid, or you tell those who have decided to not vote (which is their right) to keep quiet over other issues; why not take a moment – hold back and think…

Is this really the best use of my time?

Do I know everyone’s life and experiences and what has led them to this decision which is theirs to take?

And could I be a better ally to those who have no voice?

 

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Being “bad child – crazy girl” in neurotypical education structures – the struggle for equal rights!

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!
Screenshot - charlotte farhan

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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If you have any questions on this topic or about my journey, please fill in this contact form:

My open letter to MIND – The mental health charity; Dear Mind, please help me!

Dear Mind,
 
my name is Charlotte Farhan and I suffer from C-PTSD, BPD and Psychotic Depression, from these illnesses I then suffer as symptoms other illnesses such as derealisation, agoraphobia, OCD, GAD, BDD and adult ADHD.
 
I have been in the mental health system since I was 12 and I have had many issues with malpractice, abusive care, neglect and unprofessional dangerous physicians treat me.
 
I have been told a few times and only just recently there is nothing they can do for me anymore, I am too severe and complex?
 
I have not been out alone for over 9 years and am housebound most days, I have no earning possibilities (however I am an artist and I run a non-profit with the help of others – this keeps me having a purpose) I have no family and my husband is left caring for me and is on minimum wage, I have no benefits as I can’t use the phone due to my illnesses (paranoia of being bugged) so can not get the forms, the forms hurt my brain so even if I had them I can’t fill them out without support.
 
I also have diabetes, chronic erythema nodosum and PCOS, which due to my mental illnesses I can not access any care for these. I can’t go to the surgery on my own when my husband is at work, it is closed by the time he returns, sometimes I wouldn’t be able to go at all I as I can’t always go outside, once a week is normally what I achieve but a lot of planning goes into this. And was told by my GP that I can not get home care as mental illness is not considered within this context. So I am left to die. No bloods being taken, no diabetic checks, no check ups on my chronic erythema nodosum which is getting worse, no care or rights for my PCOS so no care of rights for my fertility.
 
I am at home trying to survive hourly, I do not know how much longer we can live like this?
 
I am a very strong person, as I have had to be, but really I am not at all. Everyday I fight for mental health rights, so that I may one day be able to change this for me and others like me, which there are so many!!
 
I am asking your for help? I need you to help me get my voice heard so that I do not lose my battle, so that my husband does not have to carry this on his shoulders alone, so that all the people I have spoken to who are in my situation are heard.
We have no rights, neurotypical privilege is everywhere, we can’t survive without your help.
 
I have been struggling since I was an infant, I am a survivor of child sexual abuse, sexual violence as a teenager and sexual assault (which was in an adolescent unit) and both my parents have severe mental illness too, who I do not speak to due to their emotional and physical abuse, Mother with Bipolar 1 with mixed states and BPD and a Father with alcoholism and then alcohol induced psychosis, they have been in and out of psychiatric hospitals when I was a child. I was even left alone at 12 for many months whilst my mother was in a psychiatric ward, that was due to the fact she went private so social services were not alerted.
 
Please read this blog post and please let me know if I can share my story further? Maybe someone will help me? Maybe I will be able to live a better life or more managed life? Help me have the same rights as others!

Why is Severe Mental Illness left untreated in the NHS Mental Health Services:

 
I am desperate so have nothing to lose!
I hope to hear from you.
Thank you for your time xxx
 

 

Why is Severe Mental Illness left untreated in the NHS Mental Health Services

Art By Charlotte Farhan

Art By Charlotte Farhan

The mental health system in the UK which is provided by the NHS is failing people like me everyday; so lets see why?

Here is what the NHS have to say about accessing mental health services in the UK:

Mental health, emotional wellbeing and resilience is all about how we cope with what life throws at us. It concerns the way we feel about ourselves, conduct relationships, handle stress or deal with loss.

Good mental health and resilience are fundamental to good physical health, relationships, education and work, as well as being key to achieving our potential.

This is just an opening statement on the NHS website and already there are many issues:

  • The first sentence implies that mental illness is only from environmental factors around us such as “what life throws at us” and completely negates to say that mental illness can also be a neurological condition which is visible to us on MRI scans. So for people like myself who have C-PTSD, BPD and suffer from periods of psychosis or someone who has schizophrenia, bipolar-disorder, dissociative disorders and many more are left already feeling like this does not include us.
I Am Still Bleeding - By Charlotte Farhan

I Am Still Bleeding – By Charlotte Farhan

  • It goes on to say, that in order to maintain a good life: mental health, emotional wellbeing and resilience are paramount. When someone like me sees this, the complete lack of effort to include severe mental illness appears as if the NHS caters to an exclusive group which myself and others are not welcome in. Some mental illness is not “fixable” in that there is no cure and the assumption and misinformation is irresponsible and suggests that those with mental illness can be healed with a one size fits all solution.

 

 

  • For us with severe mental illness the world is very different , we do not have the privilege of those who suffer from situational depression and anxiety solely. The world expects and allows us as people to feel depressed after death, or anxious after a car crash and what ever else “life throws at you”.  This was not always the way, society has come leaps and bounds in the last 30 years to accept depression and anxiety in a mainstream way. This help is now widely available to the general public and society is more and more open to those who suffer from depression and anxiety as most people have had it or know someone who has. With celebrity faces, depictions in modern film, TV and literature as well as many charities and campaigns continuously running to educate the world about depression and anxiety, the world is still silent about those like myself still viewed as “crazy” or “psychotic”. Due to complex sever mental illness which are still only referenced in horror films, crime dramas, documentaries about “the criminally insane” murderers, news reports where “someone with a personality disorder has killed someone” or referenced as the go to insults for people displaying “weird” behaviours.
Art By Charlotte Farhan

Art By Charlotte Farhan

The NHS go on to say:

Less common conditions, such as psychosis, can make you experience changes in thinking and perception severe enough to significantly alter your experience of reality. These conditions include schizophrenia and affective psychosis, such as bipolar disorder, and can have the same lifelong impact as any long-term physical condition.

 

 

The issue here is that even within the severe mental illnesses there are some which will be focused on above so many others. With an over emphasis on  Bipolar disorder, schizophrenia and a general reference to psychosis. There is no mention of the most common of these disorders; C-PTSD or PTSD, there is no mention of personality disorders, dissociative disorders or to the disorders which have psychosis as a symptom. It is as if the world is not prepared to let go of the label “crazy” and still needs some of us to be under this stigmatising label so that we can be scapegoated as the deranged creatures of nightmares so that fingers can be pointed and there is a face to the monster.

This next paragraph from the NHS is misleading:

Mental illness is treatable and, with appropriate support and treatment, people do recover. Many move on with their lives and are able to care for their family, contribute to the local community, and get back into employment or training.

Vulnerability - By Charlotte Farhan

Vulnerability – By Charlotte Farhan

The sweeping statement that “mental illness is treatable” is an insult to many, it should instead read ” some mental illness can be treatable and severe mental illness is manageable with continued support and treatment”. This goes back to the generalised view that depression and anxiety are the only illnesses affecting the masses and that people can only have mental illness which is subject to your own psychological resilience.

Also some with severe mental illness like myself have symptoms from our illnesses which are depression and anxiety, so you will be offered in the NHS to have these treated rather than the severe illness which caused the symptoms of depression and anxiety. for example, I have C-PTSD, BPD and psychotic depression and due to these severe illnesses I have other illnesses which are symptoms of these, such as: GAD, agoraphobia, OCD, Adult ADHD and BDD.

And then lastly the NHS tell you what is needed but only provide one option in reality:

But this may not always be a straightforward journey. Many people only need a short course of psychological therapy or six months of medication, while others will need much more support and intensive treatment, be it medication or extended therapy.

The issue with this paragraph is again how the less complex and severe your illness is the more you are taken care of. Most people will only need a short course of medication and some focused counselling like 6 weeks of CBT if they suffer from anxiety and depression if caused by general life’s ups and downs, they may then need this again and it will be available to them throughout their lives.

Neurosis and Psychosis - By Charlotte Farhan

Neurosis and Psychosis – By Charlotte Farhan

However when it brushes us “the complex cases” under the carpet with the statement “while others will need much more support and treatment” this makes me very angry. As they imply they “the NHS” will provide this for us, but in fact this is NOT the case as all. You will be offered drug treatment of archaic psychotropic drugs, you will be offered short term therapy (6 weeks) and then once you have had this treatment you can not re-apply for treatment until after 6 months. So if you are not “cured” after 6 weeks, tough luck! Which as you have read is impossible for complex and severe mental illnesses.

There is no after care, the emergency lines (crisis support) they allow you to have whilst in treatment are then closed to you, (not that they answered when you were allowed to call them). Finally the pièce de résistance is that you will be told (like I have been told 3 times over the last 21 years) with no uncertain terms that “there is nothing we (the NHS) can do for you now, sorry”.

Agoraphobia - By Charlotte Farhan

Agoraphobia – By Charlotte Farhan

The devastation that is felt by people like me, who are unable to be part of society due to our mental illnesses due the stigma attached to us, is so overwhelming that in most cases it leads to a relapse and more often than not self-injury, suicide attempts or death. When this last happened to me last year, I suffered a further breakdown and relapse, this meant I did not take care of myself for over 6 months resulting in more ill health. If I did not have a husband who takes care of me when ill, I would have died. So what about all of those alone? What about my husband who has to deal with this on his own?

Now I ask you, is the mental health system working effectively?

Source: http://www.nhs.uk/NHSEngland/AboutNHSservices/mental-health-services-explained/Pages/accessing%20services.aspx#

Next time I shall be sharing my timeline of treatment within the NHS from age eleven to now. So follow my blog to keep up to date on my future posts.

 

My colleague from ART SAVES LIVES INTERNATIONAL and dear friend Jade Bryant is also exploring the NHS and its failings within the Mental Health System, please follow this link to read more and get involved by sharing your stories.

Attitudes Of The Mental Health System – By Jade Bryant 

 

Find more art from Jade; HERE

This is the beginning stages of a campaign which ASLI (our non -profit) will be running in the near future. We hope to elevate our voices and others and then we hope to take this to the government; to bring about change as well as running workshops and programs which will aim to engage better understanding within communities, so that people like myself and Jade and so many others can be included properly in society which will inturn help us with our mental health.

Thank you for your time.

Pain and Detachment - By Charlotte Farhan

Pain and Detachment – By Charlotte Farhan

If you have anything to say on this subject, or your own story please get in touch via this contact form: