Being Disabled in an Able Constructed World

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.

Complex Post Traumatic Stress Disorder, Psychotic Depression, Borderline Personality Disorder, Agoraphobia, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, Attention Deficit Disorder, Depersonalisation, Derealisation,  Body Dysmorphic Disorder, Autism, Diabetes, Chronic Erythema NodosumRheumatoid arthritisPolycystic ovary syndrome.

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.


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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.
ableist bingo
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.
including-kids-and-teens-with-mental-illness-in-the-church-and-community-7-638
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

Waking up from Terror to Panic – PTSD Awake and Asleep

Art by Charlotte Farhan
Art by Charlotte Farhan

Waking up this morning was a torturous affair, opening my eyes, feeling that sensation in my stomach, the one that feels as if you dropped off the earth but your body is still looking over the edge waving you goodbye. It feels like sinking in pain – as if pain was quick sand, if I did not know better I would say someone had opened me up in an operating theatre, during my sleep and rearranged my internal organs and sewed me back up.

Laying there with only feelings not thoughts, no rational thinking commencing in this lucid state. However the pain is reminding my brain of other hurt, other ordeals. Like a back catalogue of torture, my mind runs through a long list, flashing images in front of me, in an attempt to condition me or subliminally coerce me. Then with no warning, I am awake! My fight or flight has been triggered, blood is rushing from my head to my extremities, preparing me to run away. There is no where to run, no where for me to escape this danger, for the danger only exists in my brain, my own neurology is basically trying to run me out of town.

Peoples opinions and past criticisms enter my stream of thought, “It’s all in your head”. I chuckle maniacally to myself and say repeatedly “Yes, it is indeed in my head”. The idea that this is said to us, the mentally ill, the neuro-divergent, is laughable to me at this moment. As if our species has taught itself that the head/brain/mind are not part of us, not part of our physical selves or bodies. We never say to a “physically” disabled person, its all in your legs/arms etc.  All the while my brain is trying to desperately stay in the moment and ponder on the complexities of people’s lack of understanding for anything related to the unseen, our illnesses are less believable than Father Christmas, fairies, lizard people and the all powerful dude sat above us and the evil one living down in the depths of hell, but mental illness is utterly unbelievable without being in a straight jacket throwing yourself into walls, dribbling and wanting to kill people – because of course it is perfectly believable that the mentally ill are criminals.

My body is still preparing itself for battle. The pins and needles in my arms and legs are going crazy, there seems to be no blood left above my heart. My mouth becomes very dry and then my need to vomit takes over, as apparently the sickness is trying to escape me. The blurred vision begins, bringing with it more panic – I am certain I am about to die. With my breath getting quicker and my body perspiring at a scary level, the only option is to lay on the floor and accept my fate.

With no ability to leave the house, on my own – my only choice is to call someone, something I can only do with a few people. So with my double vision, tapping away at my keypad, the ring tone begins…

“Lisa?? I am dying! I can’t do this anymore, I am sure I am going to die alone here”, the uncontrollable need for safety and reassurance is like someone giving me oxygen, I hear Lisa’s voice, she knows how this feels, so I do not need to explain. Lisa try’s to distract me and get my brain out of the immediate fight or flight state that I am in, trying to focus my attention outside of myself, so that every sensation that is felt is not interpreted as a sign of dying. Eventually she gets me from the bathroom to my living room, all I can do is sedate myself now, lay in my chair and hope to sleep.

Before long sleep takes over, my parallel world opens up, a world created from old buildings which are derelict shells, past homes, schools and locations where trauma was created. There is no day or time here, no summer and no order. It is grey with darkness lurking everywhere, like every horror film ever watched muddled up with my own life events. Old faces appear behind corners and in the darkness, natural disasters erupt on a frequent rotation, buildings collapse without warning, stair cases and corridors never end, fluorescent lights flicker, music plays in the distance – songs played as soundtracks to the violence endured, smells are vivid with scents of perfumes and aftershaves by the oppressive abusers. This is where I come to rest. This – the place my mind rebuilds and orchestrates every night, a haunting performance of memories and trauma.

Sometimes the only thing my brain conjures up are flash-backs, which can be on repeat for what feels like an entire life time. The brain is able to retrieve the most long forgotten detail and with a force of pure malevolence this detail is forced down your gullet like an over-fed goose. Chocking on the terror and the overwhelming taste of bitterness, my eyes often feel pulled open, when in fact they are closed – being forced to face the shame. Upon awaking from this, the particular detail is seared into my conscious mind and begins infecting my hippocampus and amygdala, whilst poisoning my thalamus and hypothalamus, and the sickness spreads to my peripheral cortex and temporal cortex. Soon I start to feel physical pain in the places most violated, there is no time to slowly open my eyes, stretch and ponder my day, the alarm has been raised, high alert is here and my day begins again as it ends.

Here are some facts about Post Traumatic Stress Disorder, brain damage and sleep:

“When patients re-experience traumatic events and flashbacks during sleep, these nightmares can be accompanied by real physical reactions to feelings of fear, such as a pounding heart and sweating. The re-experience can occur at random or might be triggered by sights, sounds, or smells that remind the person of the trauma. Therefore, patients suffering from PTSD often try to avoid objects, places, events, or even emotions that trigger memories of the traumatic event.

In addition to nightmares, people with PTSD can manifest a state of hyperarousal, in which the individual is subconsciously “on guard” to protect himself, and as a result feels anxious, has difficulty falling asleep, is irritable, suffers emotional outbursts, or is easily startled.”

(  https://sleepfoundation.org/sleep-topics/ptsd-and-sleep )

“Psychological trauma has great effects on physical aspects of patients’ brains, to the point that it can have detrimental effects akin to actual physical brain damage. The hippocampus, as mentioned above, is involved in the transference of short-term memories to long-term memories and it is especially sensitive to stress. Stress causes glucocorticoids (GCs), adrenal hormones, to be secreted and sustained exposure to these hormones can cause neural degeneration. The hippocampus is a principal target site for GCs and therefore experiences a severity of neuronal damage that other areas of the brain do not. In severe trauma patients, especially those with post-traumatic stress disorder, the medial prefrontal cortex is volumetrically smaller in size than normal and is hyporesponsive when performing cognitive tasks, which could be a cause of involuntary recollection (intrusive thoughts). The medial prefrontal cortex controls emotional responsiveness and conditioned fear responses to fear-inducing stimuli by interacting with the amygdala. In those cases, the metabolism in some parts of the medial prefrontal cortex didn’t activate as they were supposed to when compared to those of a healthy subject.”

Tarara, R., Else, J.G., Suleman, M.A., Sapolsky, R.M. (1989). Hippocampal damage associated with prolonged and fatal stress in primates. J Neurosci 9:1705-1711.

McNally, Richard J. (2006) Trends in Cognitive Science, Volume 10, Issue 6: Cognitive Abnormalities in Post Traumatic Stress Disorder. P271-277)