Social inequality is characterised by the existence of unequal opportunities or rewards for different social positions or statuses within a group or society. There are two main ways to measure social inequality: inequality of conditions, and inequality of opportunities. Inequality of conditions refers to the unequal distribution of income, wealth and material goods. For example, women still receive lower income and ‘perks’ than men in most corporate positions. Inequality of opportunities refers to the unequal distribution of ‘life chances’ across individuals. This is reflected in measures such as level of education, health status, and treatment by the criminal justice or health system. People with dementia are locked up in secure units, without the same reference to human rights as for example, people with mental health issues. They are also offered fewer ‘life chances’.
Last year I submitted a report to the Federal Government Inquiry into Dementia: Early diagnosis and Intervention. Following this, I agreed to speak at a public hearing. I did both of these things because people with dementia continue to suffer social inequality and discrimination and it is important we speak out. As far as I can see, dementia equates to ‘social inequality’, created, according to Catherine MacKinnon in a book called Judith Butler (p 109), ‘is substantially created and enforced – that is done – through words and images’. Examples of overt words or images that create social inequality for PWD are difficult to find, other than in television programs such as ‘Mother and Son’. Whilst this was a much-loved and humorous program, it stereotyped PWD in a particular way. Perception is more significant than reality, as it enhances the social inequality.
In many countries, Australia included, a more subtle example of social inequality is PWD are not asked to be key-note speakers at dementia conferences; they are usually welcome to submit abstracts for selection to present in concurrent sessions, which is (IMO) a patronising way of ‘inclusion’. This is the same as a hotel putting up a sign saying, ‘Whites only’; it is more than speech, it is a practice of segregation by people without dementia, supremacy that controls and maintains a culture of ‘exclusion from full citizenship. There is a ‘relation between speech and conduct’ (p 110); actions speak louder than words and by not asking PWD to be key-note speakers, this action belies the words of the very organisations who purport to be advocates for PWD.
Now is the right time for people with dementia to make contact from the universe, to remind people on earth we do exist… and we are a form of intelligent life!
I agree entirely, Kate-there is sooo much social inequality for people with dementia-they should be able to do what they want to do.
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Yep!
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Kate, I read your contributions every day and value immensely the inspiration and support you give to so many. The issue of human rights is one I have been advocating for in the context of people living alone with dementia. They are highly at risk of premature internment. No mention of “Human Rights”, as required for Mental Health, as you point out.
No appropriate care packages have been designed to meet their unique kind of need. The consequence of minor mishaps can mean the easy solution – residential lock-up! I am now on our Alzheimer’s Assoc. NSW, Newcastle, AdvisoryGroup.
As a result of my written submission they are are currently preparing a Discussion Paper on “People Living Alone with Dementia”. I have given them my written proposals for both research, and a “Surrogate Carer” pilot program for “At Home” care, a similar approach to the Commonwealth Pilot I ran in the 80s when the “At Home” care packages were first being designed.
I was prompted to act by the exclusion of this High Risk target group in the otherwise excellent Alzheimer’s Aust. Budget Submission last year. The USA Alzheimer’s Association had, in their Budget Submission, included a detailed Special Report – “People Living Alone with Dementia” .
Premature internment, resulting from inequality in the allocation of appropriate “At Home” care – premature institutionalisation – is, indeed, a human rights issue.
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Thanks for sharing Judy, and well done on sending in a submission. I’d love to read it one day?? You are spot on regarding people living alone at home with dementia. The issues of being locked up – pharmacological or physical restraint – is indeed a basic human rights issue. One of these days, providers and the medical prescribers will have to make changes…
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Kate – I didn’t know this was happening because I hear about the conferences that you speak at.
Maybe the place to write to are the organisers of the conference so that in the next conference they will hopefully invite 1 or more actually PWD.
Or you can post something on their Facebook page and ask us to follow up your message with comments of support.
Isn’t there a younger onset conference coming up (or has it just been on?) I think it didn’t have any patients …… I think from looking at the speakers I only noticed providers etc.
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I should have added yesterday, New Zealand are well ahead of the pack, as they have been inclusive of PWD for some years. They have a PWD on their Board, and at least the last two major conferences that I know of, have had PWD as key-note speakers.
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Malignant positioning is a terrifying part of what happens when someone is diagnosed with dementia. One day a person is a citizen, day after diagnosis…
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Right on Kate! There is great truth to the old saying ” The squeaky wheel gets the grease” Keep squeaking boldly my friend. Eventually the noise will become so loud it cannot be avoided!!! It took forever for wheel chair bound people to get recognized enough for ramp accessibility into public places, but we finally woke up to that. This new paradigm unfolding based on love will propel you along into the light of understanding and compassion! Hang on!!! Blessings….VK
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….A very good article Kate…clear, concise, direct and accurate……with the current epidemic under way…….soon we will be very hard to ignore…
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yay!!! and not before time…
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