disAbility Rights and Dementia

Screen Shot 2015-11-05 at 9.16.04 amMy blog today consists of some quotes from a blog I read, about the rights of people with disAbilities, the World Health Organisation determination on Discrimination, and my thoughts on all of this in relation to people living with dementia. People with dementia are currently advocating for inclusion and recognition under the United Nations Convention of the Rights of Persons with Disabilities (CRPD), so it fits well with our work.

To begin this discussion, I wanted to include the World Health Organisation’s position on Non discrimination, as it seems to me that most people with dementia are still being discriminated against.

“The principle of non-discrimination seeks “to guarantee that human rights are exercised without discrimination of any kind based on race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status such as disability, age, marital and family status, sexual orientation and gender identity, health status, place of residence, economic and social situation”.

Committee on Economic, Social and Cultural Rights, General Comment No. 20, Non-discrimination in economic, social and cultural rights; 2009. 

And now to quote some interesting parts of Neil Crowther’s blog; Making Rights Make Sense, as it appears to me that it is all related and highly relevant to the disAbility Rights of people with a dementia.

In celebrating the passing of the DDA, it’s the message that matters

By Neil Crowther, posted on Making rights make sense on November, 4 2015

The significance of the Disability Discrimination Act was and remains largely symbolic. Saying this is not to denigrate its actual effect as a piece of law, which is frequently overlooked. Rather is it to say that in marking its passing and understanding its relevance and importance two decades on, our attention should be drawn to the message that its passing reflected and sent to society regarding the status of disabled people, more so than its direct effect.

Fundamentally the message was this: disAbled people deserve equal rights to participation, not society’s charity, and what stands in the way are socially constructed barriers that must be removed, not disabled people’s bodies or minds...

Further on, Neil says:

State charity, not equal rights and inclusion have been the focus of campaigns, with the impact of impairments and health conditions on functioning the principal battleground.   Where equality and human rights law and standards have been invoked it is to defend state charity – the very idea disability rights activists once opposed and a major reason why such laws and standards now exist. The language and images of vulnerability and dependency have been rehabilitated to fight these battles, where once disabled people wore t-shirts with the slogan ‘piss on pity.’ 

Of course, people cannot participate equally when they lack the resources to leave their home or do not know whether they will be able to afford their next meal….

This resonates so well with my discussions and thoughts about how the Dementia Friendly Communities and Dementia Friends campaigns and initiatives around the world, are more about raising profile and funds for organisations, than actually changing the lives of those of us living with a diagnosis of dementia. The lack of FULL inclusion in the work, including employing people with dementia, continues, and it does, mostly, continue to be “About us, without us”.

Those working in the dementia sector, who all have paid employment (thanks to people with dementia and our families), and are being supported to attend conference and events, and sit on Dementia Friendly Working groups, are doing so, mostly without including enough of us, and not referring to us to guide the work more fully. Saying it is hard to find people with dementia to speak out, is no longer an option! It is imperative we are given full access to our rights in this work, or it remains a rather symbolic and patronising ‘charity’, that continues the stigma, isolation and discrimination we currently experience.

Neil Crowther ends his blog by saying;

The DDA itself did not change the world, but it was a watershed moment in terms of how the world was coming to view the status and rights of disabled people – one which has since begun to spread across the globe. 

Read the full article here…

Let’s hope the DDA is embraced by and for people with dementia very soon, and our rights to things such as full citizenship become a reality.

8 thoughts on “disAbility Rights and Dementia

  1. You always have such decorum with this topic…of all the things I could imagine I will encounter on the dementia/Alz journey, our nearly absolute exclusion – even often from our own personal care – baffles me, and defies all logic. On the good note, I am very glad to also find that I am not the only one upset by this…as there has been a long line of remarkable people come before my entry into this diagnosis raising awareness to the cause. I am so grateful for all you do.

    • Oh gosh faith… decorum is not something often attribute to my musings! But, I am slowly becoming more tactful (???)… glad you are following with advocacy as we must all keep going. The stronger the collective voice for full citizenship, inclusion etc., the better chance we have of making change. xx

The only thing missing in this global conversation is YOUR voice... Thank you.

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