And it often still seems to be more about Purse Centred Care than Person Centred Care.
People with dementa are living with acquired disabilities, and as such all of the Articles of the CRPD and other relevant Conventions must be considered and realised. From a rights perspective, we are ALL rights bearers! Yes, although unbelievable to some people without dementia, even people with dementia have rights.
My hope is that one day, organisations will pay people with dementia, at a rate that is not patronising or insulting. A $30 voucher, is more of an insult; it may be better than $zero, which is what is usually is, but I think I’d rather get nothing than accept a voucher. I do feel I have positively moved that particular issue on in some cases, as I am now paid appropriately in some research projects, and am even paid for providing sessions as part of education or promoting things in one or two organisations.
Many however, expect that people with dementia will not only do it for free, but will be grateful to have been ‘meaningfully engaged’ and will ‘feel valued’.
We could get lost in the very valid arguments over women most often being paid less than men, in the same role, or people with other disabilities being paid less than everyone else, or less women represented on boards, and so on. There are also other valid arguments I hear too, if I talk about this topic with dementia advocates. For example, many make comments such as ‘but I love volunteering’ or ‘it makes me feel valued’.
If we only expect that, we probably miss the point.
Primarily due to Prescribed Disengagement®, and not dementia, I believe most people with dementia have ‘accepted’ they are not valued enough to be paid, if they still want to work. This phenomenon has also lowered everyone’s expectations so much, most don’t even think about their worth in terms of money. That is the reality, whether we like it or not, and I’d go as far to say that we (people with dementia) should all stop doing anything for free, at least for a short period of time, to make a point. If you love volunteering of course, that is fine, but maybe in this context, it is doing us all harm. Most of my work is unpaid volunteering too, so it would be difficult for me to step down too, but maybe the time has come for that…
So why am I ranting about the hot topic of being paid today? I have taken a very long route to get to this point, but in short, a friend and colleague sent me an article this morning, and afer readign it in full, it has had me thinking about this form of stigma and discrimiantion all day!
Perhaps I need to become an Inactivist?
The abstract in this article is what got me started, and although it is specific to research, I feel it is very applicable elsewhere:
Research has the potential to be a powerful tool for the realisation of the rights of disabled people. However, antiquated research practices continue to marginalise disabled people by excluding them from research; inadequately remunerating them for participation in research; undertaking research that assumes difference; and not including their voice in the leadership design or implementation of research. This article builds on emancipatory, participatory and inclusive research methodologies to introduce a new human rights-based disability research methodology that presents a roadmap to overcome these problems and transform research into a means of rights realisation. It presents a protocol for the methodology that was created by the international Disability Human Rights Research Network. Finally, it explores many challenges that researchers may face when endeavouring to implement the methodology.
KEYWORDS: human rights, disability, research methodology
Arstein-Kerslake, A., Maker, Y., Flynn, E., Ward, O., Bell, R., & Degener, T. (2020). Introducing a Human Rights-based Disability Research Methodology. Human Rights Law Review.
Footnote: I do have access to the full article, but it is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model) so I am unable to share it here.