This work was created for, and in collaboration with, the York Minds & Voices group.

Minds and Voices are a peer support group for people living with dementia. Their recent achievements include creating and delivering ‘A Good Life With Dementia’; a course for other newly diagnosed people. Several versions of this course are running across Yorkshire in 2022. They are continually involved in various research projects with universities, address health providers to help improve treatment, and have rewritten York City Council’s dementia strategy to better reflect their lived experience.

The work was inspired by small yellow cards with black text saying ‘I want to speak please’, which members can hold up to attract attention at meetings. Everyone has something to say, and we all benefit when we listen to the experiences of others. All the phrases on the quilt were said by members of Minds and Voices.

Each member of the group chose a colour and a fabric to represent themselves. Their raised hands were cut from these fabrics, showing they are not afraid to put up their hand and speak their truth.

The phrases are made in a mix of every fabric, to show the collective nature of the group, a coming together of peers and friends who always support each other and speak with one voice.

The phrases are:

I'm me
We’ve all got minds and we’ve all got voices
Let me try
Bad days are lonely
Here I am, and I am who I am
I’m frustrated
We are birds forever in flight
Stand up, stand out, rejoice!
Clinicians put us in our coffins
Simply be kind and patient
Hurry up and find a cure
Never be ashamed
Dementia is cruel
I get fed up with it
It's not contagious
I'm normal inside
Ask us
See the person, not the disease
Listen to the experts
Once you’re diagnosed, nobody bothers with you
Speak to us
We're still human beings
Have a laugh

This work is dedicated to all the members of Minds and Voices, past, present and future. May their voices always be heard loud and clear.

Alun Kirby, 22^nd February 2022. With thanks to my Production Assistants, Leyla and Astrid. (I Want To Speak Please, various fabrics on quilted cotton, 4 x 1.5 m)

Further Information

If you would like to know more about Minds and Voices, please visit https://www.dementiavoices.org.uk/group/minds-and-voices-york/

Minds and Voices are part of the DEEP Network:  https://www.dementiavoices.org.uk/

One member of Minds and Voices, Wendy Mitchell, wrote a best-selling book about her experience of early-onset dementia. It is called ‘Somebody I Used To Know’.

Recently, Wendy published her second book. It contains insights about dementia gained from all the different experiences of Minds and Voices members, as well as her own.

It is out now and is called ‘What I Wish People Knew About Dementia’.

The course created by people living with dementia, and taught be people living with dementia to people newly diagnosed with dementia is called ‘A Good Life With Dementia’. You can find out more about it here: http://www.innovationsindementia.org.uk/wp-content/uploads/2022/01/Good-Life-Resource-Pack_Web.pdf

Many amazing people were involved in this project. We especially remember Rita, Peter, and Maria-Elena. Their beauty and wisdom remains with us.

The hands: Pat (fluffy turquoise), Penny (blue), Sue (colourful), Robin (light green), Ron (fox-red corduroy), Damian (LFC red), Monica (blue paisley), Eddy (red, white and blue), Elaine (black gladioli), Eric (red), Keith (red tartan), Bob (stripy blue), Sheila (rose pink felt), John (dark blue), Sandrea (emerald green satin), Wendy (yellow silk), Anna (mustard yellow velvet), Colin (vivid red satin), Brian (navy blue), Sue (bright green sparkly), Barbara (woollen check), Alice (woolly green), Glenice (green cotton), Leyla (cakes), Astrid (camouflage), and Alun (cyanotype blue).