Our Journey so Far – Me and my Psychiatric Assistance Dog

 

This is our journey so far…

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

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

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

the list goes on…

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

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

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

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

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

We did it!

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

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

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

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

 


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

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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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