I’m motivated to post a blog here today because of an article I read written by Dom Kelly, who is a co-founder of the New Disabled South, an organisation devoted to fighting for people with disabilities in the South, where issues like poverty, voting rights, and criminalization disproportionately impact the disabled community.
In Australia, these issues also disproportionately impact our First Nations People, and for the record I will be voting #yes at the upcoming referendum. Not to, highlights ignorance and racism, and a #no vote will also highlight yet another lost opportunity, showing the world once again, it is lagging behind.
Moving away from a brief moment of ‘politics’, in Dom Kelly’s article, Disabled people deserve more than medical research—we want liberation, he says,
…philanthropy has almost completely failed [people with disability], with just a few small funders embracing the idea of liberation for disabled people—a world in which we can thrive with full rights, justice, and access—as worthwhile at all. … The reality is that now is the moment to invest in disabled people. Not for cures and fixes but for our liberation and in the fight against ableism.
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What we in the disability community know is that every issue is, in fact, a disability issue. Every form of oppression causes disability—from racism to environmental injustice and colonialism to reproductive injustice and homophobia to patriarchy. And disability makes all of us more vulnerable to every form of oppression. If you are a funder who cares about abortion, you should care about disability. If you are a funder who cares about racism, you should care about disability. If you are a funder who cares about capitalism or labor unions, you can’t forget about what capitalism is doing to workers—disabling them. When or once people are disabled, they are that much more vulnerable to union-busting corporations, racist cops, abusive husbands, transphobic laws. The list goes on.
Dom Kelly 2023
To say philanthropy has failed people with disability is correct, and it continues to fail us. This includes people with disabilities caused by dementia, and goes to the heart of many of my beliefs, experiences and thoughts as someone living with cognitive and functional disabilities due to a diagnosis of dementia and a brain malformation. In this post, I briefly discuss two concerns raised by Kelly’s article.
1. Trailblazing, promising and hopeful: Unlikely
The first is my lack of enthusiasm for the drugs recently fast tracked, for people with dementia. I wrote about htis recently, including sharing this petition Lecanemab is neither safe nor effective for Alzheimer’s patients: Against the FDA approval. See my blog which includes discussing that people with dementia shouyld not be treated like lab rats, is here.
I’ve been in discussions with a friend and colleague, Markku Kurkinen, PhD, who has a similar view, as does Dr Peter Whitehouse who I have met once, and followed for years. I imagine we, and anyone else who is not ‘ravingly enthusiastic’ about the release of these harmful drugs, which others describe as ‘hope’, are all being written off as ‘ignorant’, or as ‘scientific cranks’! Of course, we are not being funded by the pharmaceutical companies either…
So, I do not believe best practice has been followed with the fast tracking of Aducanumab, Lecanemab or the latest one called Donanemab, which appeared to be partly why more than 10,000 people attended the AAIC conference in Amsterdam recently to celebrate. Unlike the dementia charities, I do not see them as trailblazing, promising or hopeful.
On a positive note, I am pleased at least a few psychiatrists have said they will not be prescribing some of these drugs. Hallelujah!
2. Philanthropy ignores People with Disability.
The second point Kellys article caused me to think about, is the lack of adequate funding for the only organisation in the world which is run by, and inclusively for people with dementia. Although a proud co-founder of Dementia Alliance International (DAI), I have great reservations about it making any real change in terms of advocacy, as in the almost 10 years since launching, funders have been exccruciatingly scarce. Many other silos have also been set up, some inspired by DAI. Many people say they want to support an organisation which is of, by and for people with dementia, but when it comes to people with dementia in it, having agency, an authentic voice, and a seat at the very tables they sit at, they are much less keen.
Words spoken publicly or privately may not reflect this, but the actions – and inactions of individuals and organisations do. It took 18 months for DAI to find one strategic partner to sponsor them, and eventually they found two. It’s back to one now, as their first strategic partner no longer felt there was any value in partnering with DAI, and has set up their own branded ‘Experts by Lived Experience Advisory Group’. The level of funding from both partners has never allowed DAI to operate progressively anyway, so perhaps instead, has been a very cost efficient, but also strategic silencing mechanism, that has been styming authentic advocacy.
As Dom suggests, with so few funders, and such a small amount of funding, no organisation, not even ones representign the global disability community, and no individuals without dementia appears to be embracing the idea of liberation for people with cognitive and functional disabilities due to dementia, or of self representation. It is time we harnessed the CRPD, and also time for the international disability organisations and community to not only embrace, but equitably include people with dementia in all of their work. Unfortunately, whilst disability movements are growing, intersectional support continues to lag.
