I’ve been watching Episode 1 (Season 1) of the series on SBS , The Blinding of Isaac Woodard, and have just ordered the book this documentary series is based on, Unexampled Courage: The Blinding of Sgt. Isaac Woodard and the Awakening of America. Watching it felt like my story, except not for being black, but for having a diagnosis of dementia. Over the last 14+ years, many other people I have met with dementia have expressed similar feelings too; I felt compelled to write about it.

There is no doubt I am a victim of abuse and neglect, and of multiple violations of my most basic human rights, on an almost daily basis. I’m not emotionally or psychologically capable of thinking about the additional layers of distress, and the much harsher violations that will I have to endure, and have little doubt I will experience, if I am one day coerced to reside (be detained and incarcerated) in a locked residential care facility (institution), and then segregated due to a health condition, within a ‘secure dementia unit’, inside that residential care facility.

That some people like living in residential aged care institutions, and they or their families or care partners believe they are not being violated, is wonderful to hear, but it is also very rare.

But I digress, as I really meant to write about the documentary…

In episode one of this documentary, Isaac said (21.48 mins), “I spent three and a half years in the service of my country, and thought that I would be treated as a man when I returned to civilian life, but I was mistaken.”

Ever since dementia arrived into my health care plan (i.e., since diagnosis), I too have been mistaken in believing that one day, everyone would eventually treat me as an equal again. Disturbingly, it is only a few who do, or will in the future. Most people will continue to discrimatate, and I will keep experiencing stigma, paternalism, therapeutic nihilism, moral exclusuion, and more… I have no doubts I will continue to experience defamation and critism for daring to have a voice.

Also highlighted in series 1 of this documentary, the famous actor Orson Welles said,

‘The blind soldier fought for me in this war; the least I can do now is fight for him. I have eyes [insert ‘equal agency, equal self determination, equal value, equal respect, for ‘eyes’, when relating this to people with dementia], he hasn’t, I was born a white man, and until a coloured man is a full citizen like me, I haven’t the leisure to enjoy the freedoms that coloured man risked his life to maintain for me. I don‘t own what I have, until he owns an equal share of it.’

(Orson Wells, )

In 2008, I was treated an equal citizen most of the time, with the same value and respect as other women, even though still not with the same value and respect, or rights, as my male counterparts; but that’s still a global problem for all women and girls, no matter what the young ageist feminists say. At that time, I was also paid fairly (i.e., for a woman; in some paid roles, not equal to men) for my time, expertise and professional experience. People looked at me when they talked to me, and talked to me, not others, if wanting to know how I was, or anything about me.

Just before my 50th birthday, that all changed when Mr Dementia arrived in my life, and I became a second class citizen; dehumanised and stigmatised, and discriminated against, on a daily basis.

Stigma and discrimiantion had already happened to me, often, just because I am female, but the dehumanising impact of a diagnosis of dementia was a shock, and in some ways, also a revelation.

It has led me to haveing a voice, and to having a clarity about life that I did not have before. The arrival of a diagnosis of dementia was, and still, is the third greatest gift in my life, and seriously, despite all of the losses and angst, and yes, some days the suffering, I do not want my ‘old’ (pre-dementia) life back.

Equality For All.