Inside and Outside Maria’s Disability Pie
Inside and Outside Maria’s Dis-ability Pie.
The place I come from is not explained by the colour of our skin, our cultural heritage, our ancestral heritage, our gender, our sexual preference, our age, where we lived or what language we spoke.
I come from a place no one else can because no one else but Tony and I was there.
Young lovers eagerly, willingly, committed to wedding vows, for better for worse, for richer or poorer, in sickness and in health, to love each other… until death do part… and death came… and the lover’s physical bodies parted forever.
We learnt so much from each other. We shared an incredible love journey. Tony loved me immensely. Tony’s load got heavier and weighed him down. Tony was tired and weary. To go was a relief for him, even though he did not want to leave me and fought hard to stay. His last week on this earth was a gift of love to the family we created. Even though our physical journey has been paused, his love sustains us every day.
It is not easy to face the world out on my own again without Tony to hold my hand, to pull me up after being knocked down and give me dignity.
‘disability’ is a cruel word! ‘carer’ is a cruel word! ‘Informal Care Worker’ is the pits!
Maybe not for the recognised services industry paid ‘disability care workers’, but very true inside my ‘dis-ability pie’!
Will the songbird deep in my veins, disturbed by the sounds of silence, find the freedom it desires… in the lonely memories nothing alive matters… supressed sadness, obstinate pain… it’s gruelling to smile… the songbird has forgotten the score… is the songbird too afraid to fly because of where it will land… will the songbird spread its wings and fly high, high up in the sky, over mountains, woodlands, rivers, and seas… in the arms of an angel will the songbird’s chorus be spread by the trumpets of championing angels… let go, nothing to fear, push little songbird, plunge through the dark cloud and fly… over the rainbow where the skies are blue, and dreams come true… underneath the apple tree bring my smile back to me… for those who love me to see.
One can feel a quiet compassion for those who bravely travel along the long and winding road, navigating the potholes while carrying a load that does not weigh them down, because the cargo they carry is their kinfolk.
Parent-Child. Child-Parent. Sibling-Sibling. Carer-Patient.
A different road may appear the easier and more attractive route for people who enjoy predictability, social approval, and practised “expert said” proven ways. However, the roller coaster ride ends up at the familiar Institution of Dis-ability terminus.
Client-Carer. Inmate-Institution.
Not all disability discrimination is bad or illegal or harmful. Nor should it be. Just because a person is offended it does not signify their belief is correct or their hurt is justified.
Dis-ability injustice is the other side of the discrimination coin.
Dumping hurt syndrome is a fictional concept, or at least it is said to be…
Dumping hurt syndrome is a common but undiagnosed complication of damaging dis-ability injustice. Dumping hurt syndrome is invisible to the naked eye and occurs as one becomes numb to the ignorance of the outside being free to harm inside health.
Flight or fright responses have been tried, repeated, and failed as they are appropriate for threats of physical harm and not for the psychological dumping hurt reality.
How often dumping hurt is experienced will determine the effect on one’s quality of life. How often one’s survival mechanism is activated, and rest and digest recovery kick in after a dumping hurt incident will determine the long-term effect on one’s mind and body.
There is nothing in the outside to deter the dumping hurt from being repeated. A seemly innocent action that occurred yesterday, and is repeated today, will in all probability occur again tomorrow. Rapid occurrence of dumping hurt actions will cause a fight or flight response as sympathetic nervous system activation occurs. One hill after another climbed until the hill becomes a mountain.
The prevalence of dumping hurt syndrome depends on the type and extent and the damaging dis-ability injustice.
Instinctually, one can circuit break and mask the symptoms to help them subside over time. One can try to remove oneself from going places where “dumping” is likely to occur then one sees they have landed on the mountain that is just too hard to climb.
I was not an attachment to Tony’s wheelchair, or what is dubbed in legal jargon, a carer, an associate…
I was Tony’s wife, the mother of his children. We had a spousal bond that meant his societal imposed dis-ability was, full frontal, my invisible to society imposed dis-ability. My life was outside the biblical ‘academic social model of disability’ sacrosanct dogma. How could I, an able body, in great physical health, be damaged and dis-abled by society?
The outside turned their blind eyes… My basic social rights imperceptible!
Tony understood how invisible my society-imposed dis-ability was to the outside… the isolation, the financial sting, the arrowed heart, the physical burden, and he tried to protect me… many times he picked up my broken pieces and glued me back together… he saw what others could not see… because he was there… with me.
As I sat and contemplated writing submissions to the revered Royal Commission into violence, abuse, neglect, and exploitation of people with disability, often, I was filled with an overwhelming desire to vomit, to run away, to cry, to delete what I had written, to disappear from the outside world and fly away across the universe.
Denial of, or making excuses for, the why of our injurious experiences would be an easier path.
However, to pretend that what happen to us was not real and detrimental because it did not happen in an institutional setting would be to neglect and exploit the truth even more than the truth already has been.
Tony had a physical impairment. That fact did not make him incapable of living a full and engaged married, family, and societal life.
The outside stripped him of being a husband. His persona was distorted by a society hell bent on listening to the guidance of academic disability dogma.
The outside stripped me of my core societal identity that of being recognised as a wife and Tony and I knew that society identity was readily available to me… if I married an able body man.
I was societally seen as, therefore, publicly treated as Tony’s ‘carer’ and not his wife.
From the inside my pain built up over a period of more than four decades. Emotions when released after a catastrophic string of outside social torments came from an incredibly deep, dark place. It is awfully awkward to describe the pain I felt. It is ridiculously embarrassing to realise what caused my pain, then to acknowledge how deep my inelegant grief had set firm in every cell of my body.
Will my torturous heartache, ever melt away? Only time will tell…
From the outside people say, well Maria, there appears to be nothing wrong with you…
You are an able body in great physical health.
You can walk. You can talk. You can see. You can hear. You can touch and feel.
You know you are not damaged in the brain.
You are strong-willed, appear confident, fit, and healthy.
You had a fantastic, enviable marriage and most of the time you are happy and are fun to be with.
How on Earth… what on Earth are you talking about… that you harboured this indescribable pain?
Yes, that is right, and that torturous heartache from my experience of living with dis-ability injustice loiters today… to jog my memory… to set new boundaries and to speak out about being treated in such inhumane and cruel ways.
Anybody who asks, why did you have such pain Maria, you suffered no proven illegal disability discrimination? How could YOU be the subject of Violence, Abuse, Neglect, and Exploitation of people with disability?
Needs to ask why they did not see what was actually happening to Tony and me, time, and time, and time again.
If you still cannot see it… have another look.
In Führer Hitler’s Third Empire of Nazi Germany people with physical impairment were branded as unworthy of life. Where does ‘unworthy of life’ fit in today’s inclusive world?
Inside my dis-ability pie my obliviousness to Tony’s physical condition gave him the freedom of living his normal life as a husband, a father, a friend, and mentor to many. I inadvertently and innocently gave Tony freedom from the cruel outside ‘social model’ of academic dis-ability dogma. Until my inside could take no more from the outside…
The outside knocked around my dis-ability pie crust, so the inside spilled and splashed into the outside as my inside had nowhere to hide or be safe anymore.
For my own sanity, it is necessary for me to expose the iniquity and the mythical outside fortification.
