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Understanding dementia through the disability rights movement

Achieving greater awareness and understanding of dementia has been a priority of Dementia and Alzheimer’s associations in New Zealand and worldwide. There has been an assumption that greater understanding and awareness are key to tackling the stigma surrounding the disease. The thinking has been broadened beyond awareness under the banner of dementia friendly. However, is “dementia friendly” the right way to be looking at it?

A “rights” based approach

The disability community prefers to talk about disability rights, rather than disability friendliness. Resources, accessibility and protection from discrimination are fundamental entitlements, enshrined in the Convention on the Rights of Persons with Disabilities (CRPD). The Convention on the Rights of Persons with Disabilities is the first human rights convention of the twenty first century. New Zealand signed the Convention on 30 March, 2007 and ratified it 26 September, 2008. The Convention on the Rights of Persons with Disabilities gives voice, visibility and legitimacy to disabled people and their issues in New Zealand and the rest of the world. It is aimed at protecting the dignity of persons with disabilities and ensuring their equal treatment under the law including the right to health services, education and employment. Their delivery is not an act of friendliness (or kindness): it is a fundamental right owed to all members of the community. Failure to secure them is now described as a failure to respect the rights of people with disability, a failure to treat them as equals and respect their dignity. The blind philosopher Adam Cureton has dubbed it ‘offensive beneficence’ when a person’s rights are offered as an act of charity, kindness or generosity.

While the CRPD includes dementia, and much as been made of the need to normalise dementia and refer to it as a disability, the language and emphasis of dementia friendliness is quite different to what is widely preferred in the disability rights movement. In that movement reference to ‘special needs’ and ‘assistance’ has been replaced with ‘human rights’, ‘fairness’ and ‘opportunity’. When disability advocates talk about ‘normalising’ disability, part of what they mean is to do is reject assumptions that disability is a ‘deficiency’ or even a ‘disease’, but instead a normal part of the human variation.

For advocates for people with dementia, it is important to consider whether borrowing this view from the disability rights movement will do justice to the experience of people with dementia and their loved ones. Does dementia advocacy have a place in disability rights? If so, how can dementia advocacy be part of the broader disability rights movement?

Awareness and dementia friendliness have a role to play in changing the way we think about dementia and achieve practical change to make societies more inclusive of people with dementia. But there is a risk that generalised notions of awareness and dementia friendliness can distract from the most important factors in ensuring a good quality of life for people with dementia and their loved ones.

About Eve Williams

Eve Williams is the Content Developer and Social Media Administration for Eldernet. She is currently studying towards her Masters at the University of Canterbury. She has a passion for learning new things.