Proving unseen illness in order to survive.

I have to open myself up again, for the powers that be.
I have to retell it, relive it all.
I have to prove my illnesses and disabilities, whilst fitting in the predetermined boxes – designed for some of us to slip through.
I have fallen through the lines, the pages, told “there is nothing we can do for people like you”.
“You’re too ill”.
Jumping through hoops, running up hills – against the torrential down pour of sociatal expectations.
All this is done whilst the 1%, the bourgeoisie, the privileged watch on, as they stuff their faces with our human rights.
The media uses us as scapegoats, for the ‘outraged’ to demonise us, with the misinformation they are brainwashed by – we, the ones at the “bottom”, we bring it on ourselves.
Illness is equated with laziness, disability is questioned as being unmotivated.
The seen, the unseen and no details in between.
My work is unpaid and thankless, the sick leading the sick.
I don’t want this feeling of being less than, for being unable to fit into an imaginary “type”, conjured up by able, privileged puppet masters, pulling strings, herding the “deserving” humans into their boxes, and the undeserving to their coffins.

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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The Able in This Diverse Universe writing competition – focusing on ableism, disability, access and overcoming.

 

I am so honoured to be one of the Judges for the Able in This Diverse Universe writing competition alongside Karrie Higgins, Professor Dr. Kwame Brown and Jacqueline Cioffa.

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Find out about the other judges of this very important competition by clicking the link: Meet the Judges for Able in This Diverse Universe

Able in This Diverse Universe Essay Competition

So how and what is this all about?

“Established essayist and word-mage Karrie Higgins invites you to participate in a nonfiction writing competition on the themes of ableism, disability, access and overcoming. All submissions fees benefit the training and care of Noah Ainslie’s future Autism service dog, Appa. This competition will also serve to raise awareness of invisible illness and ableist bias.

Noah’s neurodiversity often manifests as sensory overwhelm. He has been learning coping mechanisms for six years, but still visibly struggles when it comes to conforming to neurotypical standards. He is high function on the spectrum which means he doesn’t “look like” he’s disabled. He is subjected to ableist expectations, often very aggressively and in public.

With Appa’s help, Noah will have access to the public spaces his anxiety prevents him from entering. More importantly, Noah will have a companion who loves him for who he is and does not judge his inability to conform to ableist public standards. To learn more about Noah, visit his GoFundMe page.”

Thank you from Appa and Noah.
Thank you from Appa and Noah.

Follow this link to enter the competition:

https://honeyquill.submittable.com/submit/50077

To enter this competition, please use the following guidelines for all submissions.Your work should be:

  • nonfiction
  • no more than 2,000 words
  • in PDF or docx format
  • without identifying information in your document as judging will be blind 

All entries are require a $15 submission fee which will directly benefit Noah and Appa. You are welcome to enter as many times as you want.

This competition will run from December , 2015 – February 29, 2016. Winners will be notified March 31, 2016.

The winning essayists will receive $250 cash, and publication on Karrie’s website, A True Testimony. Second and third place winners will also receive awards. 

Four Paws for Noah
Four Paws for Noah

Please get involved with this!

You can:

enter the competition

donate to the GoFundMe page

share this with friends and family via social media or email

This is such an important cause and the issues we are asking you to address, affect so many, including myself.

I am also in the process of getting a service dog for my agoraphobia and PTSD.

I live in an able world where I too have been rejected and expected to “fit in” or expected to accept defeat, so please for people such as myself and Noah, support this with an open heart and mind.

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Thank you for reading xxx

 

Being a Professional with Mental Illness: Misconceptions, Stigma and Facing Prejudice

Being a Professional with Mental Illness:

Misconceptions, Stigma and Facing Prejudice

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I have been working since the age of 14 and have done numerous jobs in my 31 years. I started off as a home help care assistant for the elderly in their own homes (even though I was under-age) and continued to work on and off in this position, working my way through training and in various care companies. I have also worked for many years as a waitress, barmaid and as a shop assistant throughout my teens and twenties. I have worked many 12 hour shifts and 7 day weeks I am not shy of hard work to say the least.

However due to my mental illnesses and traumatic adolescence and destructive twenties I have also been fired, made redundant, walked out and been pushed out due to be a whistle blower in a care home as I witnessed elderly abuse and reported it. Most of these jobs were lost or taken from me due to my mental illness. From being fired due to being signed off for mental illness to being targeted with prejudice and hate in the work place by an employer who took my mental health issues and broadcast them to other members of staff and told these members to be careful around me and not to trust me with knives and I was bullied and taunted due to this.

By the time I was 27 I had experienced a re-lapse after coming face to face with my rapist in the city I live in, whilst trying to post a letter which FYI for an agoraphobic such as myself was a massive challenge even though the post box was just outside my front door, this sent me into a spiralling decent and detachment set in, I am still suffering today with my recovery. At this time I was also a full time student at Portsmouth University, but due to this and my ability to go to classes deteriorating I was told by The University of Portsmouth I was to ill to study and had to leave my course, which as you can imagine was an enormous blow.

Now I was so unwell I cold not go outside alone or even at all most days (this is still the case) so what options did I have? I could stay in and waist away my mind due to the fact I had no medical support, financial support or the ability to work. So at first I just stopped, I was defeated and I felt as if I was sinking fast and was scared for my marriage and my life.

The thing is I may have mental illness, certain neurological damage due to trauma, a chemical in-balance and emotion regulation problems but this does not mean I was or am useless. I was just left, with nothing… As a survivor and someone who has been through so much I am very able in many things. The confusion in how “we” the mentally ill can work is a big issue and needs to be addressed under the Equal Opportunities Act and then further for our world to observe “us” as not criminal, incapable, useless, unintelligent, unreliable or some kind of contagious disease ridden liability.

However a NEW way of looking at “work” and “jobs” is needed for all of us to succeeded or provide for our family and sustain our lives. The format of the 9am – 5pm job is not suitable for everyone, nor is the insistence of office work. Already many of us work differing hours over a 24 hour period, with shift work and certain industries needing specific hours outside of the “working day”, as well as more people working from home and starting their own businesses. But are all opportunities equal and do people with disabilities get the same treatment as those without? The answer is simple, NO!

Equality Act 2010

The Equality Act came into force in October 2010, providing a modern, single legal framework with clear, streamlined law to tackle disadvantage and discrimination more effectively.

It is discrimination to treat a disabled person unfavourably because of something connected with their disability.  This type of discrimination is unlawful where the employer knows, or could reasonably be expected to know, that the person has a disability.

Definition of a disability

Under the Equality Act 2010, the definition of a disability is a physical or mental impairment that has a substantial and long-term negative effect on someone’s ability to do normal daily activities.

  • Substantial is more than minor or trivial.  For example, it takes much longer than it usually would to complete a daily task like getting dressed.
  • Long-term means 12 months or more. For example, a breathing condition that develops as a result of a lung infection.

Reasonable adjustments

Equality law recognises that bringing about equality for disabled people may mean changing the way employment is structured, the removal of physical barriers and/or providing extra support for a disabled worker.  This is the duty to make reasonable adjustments.

The aim of the duty is to make sure that, as far as is reasonable, a disabled worker has the same access to everything that is involved in doing and keeping a job as a non-disabled person.

Workplace adjustments

Workplace adjustments can be temporary or made on a permanent basis.

Examples of adjustments to working arrangements include:

  • allowing a phased return to work;
  • changing individual’s working hours;
  • providing help with transport to and from work;
  • arranging home working, providing a safe environment can be maintained;
  • allowing an employee to be absent from work for rehabilitation treatment.

Examples of adjustments to premises include:

  • moving tasks to more accessible areas;
  • making alterations to premises.

Examples of adjustments to a job include:

  • providing new or modifying existing equipment and tools;
  • modifying work furniture;
  • providing additional training;
  • modifying instructions or reference manuals;
  • modifying work patterns and management systems;
  • arranging telephone conferences to reduce travel;
  • providing a buddy or mentor;
  • providing supervision;
  • reallocating work within the employee’s team;
  • providing alternative work.

( All information taken from the Equality and Human Rights Commission http://www.equalityhumanrights.com/)

So what is really happening with this issue? (I shall share statistics on mental illness as this is the disability I have)

The most recent figures available show that only around 27% of working age adults in England with a mental illness are in employment.

The rate of employment for people with a mental illness is currently used by the government as one way of measuring people’s quality of life.

For those with mental health problems, being employed can be an important step to recovery, improving self-esteem and confidence and reducing psychological distress.

Conversely, unemployment increases the risk of developing mental health problems, and is associated with increased rates of depression and suicide.

The 27% of working age adults in England with a mental illness in employment compares with around 70% of the working age population as a whole being economically active.

We know that people with a mental illness are more likely to become unemployed, and research has suggested that less than 40% of employers would consider employing someone with a mental health problem

( From The Mental Health Foundation – http://www.mentalhealth.org.uk/ )

Mental Health Foundation

(If you would like to look further at Equality in employment in general, with regards to race, class, disability and gender please follow this link: Equality group inequalities in education, employment and earnings)

So what is it I want to convey to you, you may be asking yourself. My message is this: due to discrimination I have had to fight for rights in employment and education, I have almost completed my honours degree in Psychology and Philosophy at The Open University, who have helped me have the same chances as other students by providing me extra support. I also did not give up, deciding to follow my passions after the defeat I faced. Therefore I became what I always wanted to be, an artist which I have been very successful in since 2010 and my career just keeps getting bigger and better. When I speak of success I do not mean MONEY, I mean that I use my time to create and comment on my world and the world around me through art. With a massive following of over 40,000 people from all over the world, solo and group exhibitions, being a published illustrator, selling art, creating art for charity and campaigns and mentoring fellow artists, this to me is success. But believe me I have so much more to do!

As well as being an artist I am also the managing director of Art Saves Lives International and the co-founder of this amazing non-profit charitable organisation. I am the editor and chief of our on-line art publication ASLI Magazine and I am in charge of marketing, social media and campaigns. I have my own team and volunteers as well as our following of 5,000 supporters from around the world which grows everyday.

This is all done from my home, with my own suitable hours 10am – 6pm then 11pm till 1am with days off or half days off when I need, with none of this set in stone I can also be flexible with hospital appointments, seeing therapists and doing exposure work for my agoraphobia.

Things I can do to make my work environment easier:

  • To be e able to have no noise is important as I have
  • Being able to exercise whenever I need (for my diabetes, PCOS and arthritis)
  • I can eat alone, due to my illness I do not eat in-front of strangers for fear of weakness, judgement and germs
  • I get to start my day once my medication has worn off
  • I get to relax before work for an hour in my own environment with no pressure, this helps my anxiety as my anxiety is worse in the morning due to night terrors and hormonal issues
  • I do not have to deal with anyone I do not wish to which helps me focus on my work with no social anxiety
  • I get to take time out if I am having a particularly bad day without the “rules” and “disciplinary” action which I would ensue in most jobs, I always make up my hours and work so this is never a problem.
  • I get to structure my organisation with all of this in mind, so that anyone who works for me or ASLI is treated with these same equal rights

The things which make my life harder are made even harder by people who do not understand that I work very hard, non-profit and with my disabilities. I do not require sympathy, special treatment or exceptions, but what I do need is acceptance and for people to question their thoughts on these matters and remember hard work and valuable work do not equate to highly paid jobs or someone’s worth in general. Aligning these ideas with the other is in many ways one of our worst enemies on this planet.

So next time you see my work or me working or someone like myself please remember what you have read here, remember that I am just as valuable, hard-working and equal to you. This is not a hobby, this is my life!

When obstacles are put in your way in life you can sit there and give up and except your own defeat or you can challenge these obstacles and climb them with great force and determination, because YOU MUST REMEMBER THE ONLY WAY TO CHANGE THIS IS TO FIGHT IT! We must not be passive and except what the privileged power keepers of the world “give us”, we must not turn on the less fortunate, asylum seekers, unskilled, young, old or disabled! Instead we must aid each other within our communities to better help one another survive, but better still strive.

Thank you for your time…

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