Organisers of dementia conference hope it will remove their ‘cloak of invisibility’

Organisers of a conference that will be run by people with dementia say they hope it will help to remove the “cloak of invisibility” that comes with having an invisible impairment.

All the speakers at the 100/6000 Dementia Activism Conference in September will be people with dementia or other cognitive impairments.

The organisers hope that 100 people living with dementia will be at the conference to address issues around human rights, peer support, and the future of care and support.

The conference is being led by Deepness Dementia Media, which was co-founded by Ron Coleman, and is being supported by the Life Chances Trust charity.

It was Coleman, who has dementia, who came up with the idea for the conference and the phrase: “Take 100 people with dementia and you have 6,000 years of experience.”

Howard Gordon, another disabled activist with dementia, who is helping organise the conference and is a director of Deepness Dementia Media and one of the presenters on its Deepness Dementia Radio, said: “It will show that people with dementia can organise and attend an event that is for them and about them and about contributing to policy and thinking about how people with dementia should be treated.”

He told Disability News Service that the conference on 14 and 15 September in Dundee would “turn the media images of the incapable 90-year-old on its head, moving the focus from a ‘cure’ to what is needed now, today, not in the future”.

Attendance at the conference, either in person, or online, is free to people in Scotland with lived experience of dementia, and there will be just 10 paid places available for professionals to attend.

Gordon stressed that those professionals would be there as observers and would not be allowed to speak in the conference sessions.

He said: “The conference turns the tables on other conferences, removing the cloak of invisibility that an invisible disability brings, where our voices will be heard, not lost, spoken over or there just to validate someone else’s conference.

“It is the beginning of people living with dementia taking control of their own lives through things such as their rights under international law, a fair and inclusive national care service and an end to adversarial and discriminatory practices.

“We want to show we are part of the solution, not the problem, and that we have a right to a seat at the table for anything that involves us.”

He added: “I hope that the conference will encourage people living with dementia and other disabilities to stand up for their rights under international law and for their unmet needs and help ensure that our collective voices of the lived experience can no longer be ignored, as they have been for too long.”

Picture: Howard Gordon (left) and Ron Coleman

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