Without me, there is no we…

Without me, there is no we.

Here we have a human problem that cannot be solved by any written legislation.

Just image, if you care to, how much happened to my husband in the 65 years he lived with paraplegia, and to me in the 43 years we shared together. The physical exertion and pain, the financial struggle, the emotional trauma, the mental anguish. The social exclusion. Yet in amongst all the negative unpleasant things that happened to us we kept bouncing back for as long as we could to create a world of our own making. Filled with enduring love, fun, joy, and happiness.

Day in and day out the wrongs we suffered have never been acknowledged by the officialdom.

Instead, the wrongs were and still are sanctioned because the whole situation is too hard to be looked at honestly. Yes, the holiday cruise we chose to go on in December 2016 was our breaking point… a point in our lives where we could not take the violence, abuse, neglect, and exploitation any longer. I broke first then as a consequence my husband broke… and he did not recover.

We were proud to be human and proud to be Australian and we lived our life with the purest intent.

A bounce bandage could not fix the ‘this time’ wound imprinted on our human soul.

On that cruise the truth of our exclusion from a moral society was the catalyst, the straw that broke this camel’s back. Enough was enough! Too much to bare was just too much to bare! So, with our personal story of that cruise holiday we went to the justice system to ask the upholder of morality in our society to make a judgement. We asked them to examine our claim of being treated in a way that excluded us from being allowed to experience a normal married and independent life, as other human beings within that moral society enjoyed. 

Did an examination of our cruise holiday access a fair or just outcome or protect our human rights or ensure the rule of law? No. The justice system declared in what was viewed as an isolated single event, that being a cruise holiday, we had nothing to complain about except poor customer service.

Ha! Ha! We were and still are the social joke, Joyce!

The member representing our justice system shouted no legal disability discrimination of any kind was proven by us; therefore, none was experienced by us. The burden of legal proof, in our society’s moral court laid squarely on our untrained in legal matters shoulders. We presented our human case the best we could.

Jointly as a married couple and separately as individual human beings it must have been nothing but our imagination that had excluded us from being treated humanely in moral society. 

Most people do not care or take the time to understand because it does not affect them personally.

An honourable justice system is required to support inclusion. Laws are empty apparatus if they do not do what a moral society expects them to do. Especially when the exclusion clauses in the law are the getaway vehicles.

To author this personal statement has been challenging and has continually required me to deal with recurrence of post trauma and sad memories. This statement has taken me a good deal of time, thought, and emotional energy to author as I have found I continually needed to address my post trauma reactions to my memories of living in the real world where violence, abuse, neglect, and exploitation played a reoccurring melody in my ‘living with dis-ability pie’, and ultimately caused me great personal heartbreak and loss.

I am not alone in feeling this sort of heartbreak and loss. There are many others who suffer in silence.

I have had to assess my memories and opinions to challenge them in an objectional way. Were my memories and loss real or imagined and am I being fair in my assessment of them and the reaction I have had to my extensive lived experiences and the Royal Commission into violence, abuse, neglect, and exploitation of people with a disability?

The quantity of air we take in a breath does not disturb the volume of air left for all air breathing species to breathe. Deep-seated prejudices are required to breathe in a healthy humane society. An inclusive society understands the concept of:

Feel the love. Show the love. Share the love of time and life.

Today and tomorrow, it is a chosen path.

As Tony’s wife, I could only guess, anticipate, or imagine what not being able to stand up and walk was like for him.

I am physically active, healthy, and an assertive individual. I have had no physical impairment that has limited my mobility. I am easily able to manoeuvre through the built environment without much ado.

Despite this, in living my normal dis-ability pie daily life I was subjected to much violence, abuse, neglect, and exploitation from 1976 until 19 July 2019.

So much so, it nearly killed me. In 2017, I lost my will to live in this world anymore. I am convinced my consequence had a devasting effect on my and my husband’s health.

19 July 2019, is the day my precious, deeply loved husband died.

My husband, Antonio Giovanni Rigoni, affectionately known as Tony or Tone, had a physical impairment. The medical term is paraplegia.

Tony had a difficult life. He did the best he could, and he loved me immensely.

Our life story is proof of what happens in the real world.

Did the Royal Commission into violence, abuse. neglect and exploitation of people with disability benefit by hearing in my own words, our story, that of our lived experience?

Absolutely not, as our life was outside the ‘institutional’ setting and did not fit the narrative of the terms of reference and its agenda of having the social model of disability embedded into Australian Human Rights legislation.

There is nothing in my blogs that needs to be kept private.

Meaning there is nothing that I reveal that I consider to be too private or too sensitive to be disclosed or spoken about or debated publicly.

The topic is confronting. I understand some people with physical limitations and some close to them will be shocked, even angry at some of my statement of my truth.

Society conditions people to think and behave in certain ‘acceptable’ ways to be tolerated.

I know some do not want to know and acknowledge the truth because the truth is too painful to look at and work through.

A law is only as integral as the result it provides. If the laws relating to this topic were integral the Royal Commission into violence, abuse, neglect, and exploitation of people with disability would not have been required.  

It is easy to carry out the government’s instruction without question of whether that instruction is right or wrong, honest or dishonest, especially when one is paid to carry out that instruction and to maintain the status quo of ‘our good governance’ and ‘we are achieving great outcomes’.

The question to be answered is do previous governments and the government of the day’s instructions hinder or help all humanity in that society to live a peaceful, prosperous and happy existence.

Society trains people to accept failure of equality by making individuals self-conscious and ashamed to speak up or ask for what they are entitled to have.

People with physical impairment and their spouse are trained by our society to tolerate and endure behaviours and conditions that are not ok.

Society trains people to accept failure of equality by allowing the focus to be torch lighted on a minority group who are portrayed as disadvantaged but in fact receive much more than other vulnerable and forgotten Australians.

Society trains people to accept failure of equality by making it too hard and too expensive to pursue justice.

Real people are thrown off the train because a select noisy few want the focus to be on what affects their money generating ventures or group rather than what affects humanity as a whole.

It is too easy for people charged with social responsibility to silence the physically impaired as to make the right decisions would mean being publicly accountable for opening floodgates.

The pretence is being seen to consider the wrongdoing, then to silence or dismiss or undermine the claim of wrongdoing so to justify the wrongdoing as okeydokey to continue.

Our experience of the justice system is token payments with silencing conditions by perpetrators are encouraged, while pursuit of justice by the “protected persons” is discouraged and illusionary.

Tony and I did not merely make accusations we swore the truth of our experience under oath in a justice system courtroom. 

We as applicants of our equal opportunity claim carried the onus of proving that the incidents on which we relied as constituting unlawful discrimination did take place. Unfortunately, we were unaware we should have worn body cameras everywhere we went while on holiday just in case we had a need to complain.

We were advised by Princess Cruises that the claimed incidents were thoroughly investigated. The staff were interviewed. No statements were produced saying the events we revealed did not take place or that the staff involved denied our description of the events. 

Our statements made under oath were dismissed as not good enough as we did not have admission statements from the respondent’s staff involved in each instance. We did not realise we needed to subpoena them as witnesses. Therefore, there was no acceptable evidence the events we claimed took place.

We were expected to forensically prove every statement we made was true and explain why we considered each of our experiences was unlawful disability discrimination under the legislation.

We had to forensically prove some statements made by the respondent about their own ship were false.

The respondent accused that my (me as an individual) sole intention was to inconvenience them as much as possible rather than seek a resolution or even properly plead a claim. They accused that I had caused a significant waste of the time and resources of the various court staff and members of regulatory bodies and that we had not properly in legal speak particularised our loss or what we were claiming.

The respondent claimed that it was clear that the Victorian Civil Administrative Tribunal (VCAT) Human Right process was being abused by us in this case with a disproportion of costs of the Court and the Respondent being incurred in circumstances where there was ‘no intention by us to resolve the claim’ or even particularise our alleged loss or damages claimed and there was no evidence of loss suffered by Tony and me.

The representative of Princess Cruises accused one member of VCAT of being biased towards us and stated that they did not have to abide by Australian law as they were not an Australian company.

The word of the proposed wrongdoer is taken on face value as honest, and they have no requirement placed on them to provide proof of their word or anything else.

Negotiate an amount of money to guarantee a silencing gag was the intended game. We were not interested in a financial settlement we wanted a clear determination of the court if we had been or had not been treated unlawfully by the cruise company to bring the behaviour to the outside world’s attention.

Because we would not accept a silencing gag and wanted the justice system to settle whether we had been the subject of unlawful disability discrimination I was portrayed as a vexatious litigator who was dragging Tony into something, he did not want to be involved in.

VCAT Human Rights division after many initial and mediation hearings and a two day determination hearing told Tony and I we were not subjected to unlawful discrimination rather we experienced nothing other than “poor customer service”. After the two day hearing it took the VCAT member six months to provide us with his determination that nothing unjust befell us.

If a flaw cannot be seen no one considers it or questions its substance or the resulting damage.

Whatever… for me I am no longer subjected to what I was for the 43 years I ventured with Tony in his awkward world. Tony is no longer with me in physical form. As sad as I am about that, I understand we are both free now from what society dumped upon us.

Accessibility is a value of civilization, reflected to the world by the actions of people living in that society.  

Acknowledgement of our lived experience may give society an opportunity to understand at a deeper level what really happens in daily life and with that understanding bring about some transformational change.

Tony never saw himself as, behaved as, or accepted that he was, ‘dis-abled’.

“Disabled” was the unkind and painful label society placed upon him and did not form part of his personal identity.

I was Tony’s girlfriend, his fiancée, then his wife, and the mother of his children. I was never his “carer” and especially was not an “informal care worker”.

“Carer” was the unkind and painful label society placed upon me and did not form part of my personal identity.

Tony had a physical circumstance that made getting around autonomously much harder for him than for most other people. He lived with that physical circumstance for 65 years, and he was fully aware of his physical capacity and physical limitations. I, his wife, was up to speed with his physical condition and most of the daily challenges we encountered. 

If Tony could not navigate the built environment, he was excluded, or he became an on looker or he was required to exert greater physical, emotional, mental and financial effort to participate in society.

If Tony could not navigate the built environment, we could not.

Two people, husband and wife were excluded, or became on lookers or were required to exert greater physical, emotional, mental and financial effort to participate in society.

We tried to protect ourselves but sometimes we could not escape the stigma placed upon us by the outside world.

Tony was trained by society not to expect much and to accept that missing out was standard routine. “Don’t make a fuss or you will stand out”. “If you want to be accepted as normal just accept the status quo”. Tony was trained by society to be silent and compliant to society’s rules.

Society consistently reinforced to Tony it was too hard to accommodate his physical and emotional needs.

Society didn’t really take Tony’s needs seriously.

Society failed Tony.

Society failed us.

The majority of our society have no idea, no clue, about disability injustice as they have no hands-on experience of impairment in their personal life. It is not part of most people’s psychological schema.

The hurt, humiliation, embarrassment, frustration and financial disadvantage experienced by Tony and me due to not being treated as equals in society were the same whether the intention was purposeful or naïve, professional or casual.

Even if a person knows or lives with another person who is physically challenged, they still may have no personal experience of what living with that physical impairment is like. I have never not been able to stand up or walk. I don’t know what it was truly like for Tony.

I can sit in and wheel around in Tony’s wheelchair, my experience could never be like his as unlike him I have a bit of bulk, functioning leg and foot muscles. My balance is intact as I have functioning left and right hips muscles.

I could only guess, anticipate, or imagine what not being able to stand up and walk was like for Tony.

Unequivocally, I did see, feel, hear, and share how daily life, various incidents and situations affected him and made us both feel.

I understand why Tony tried so hard to be seen as ‘normal’, to not make a fuss, to rarely complain and to put up with so much he never should have been subjected to in the first place.