A mothers words

The recent Ambient jam salon brought together 15 artists, volunteers, the Entelechy core team, two PA’s and Ruth, a mother of one or our members who has complex disabilities.
We had invited support staff, but they weren’t able, as yet (we’ll keep on trying!), to come. Having Ruth – the parent’s voice there, enriched our salon with personal articulate testament. It brought into the room needed missing content.

The chance for a combination of people coming together illuminates with refreshing force the need for hybrid teams leading on this practise: artists, parents, family, support staff, health sector practitioners, and PA’s. It gives the work more gravitas and sense, external facing validity, and broadens the language in a way that only this mix of experience’s can do.
It is hard to place sentences around our shared, and contrasting, non-verbal sensory experience, or to fit sensory experience into words. However when given time it is a place full of possibility where words become tools able to carry sensory information.

I was only able to transcribe a little of what Ruth said, and hence these are fragments and not necessarily in the right order. These fragments inevitably omit the way she said things, which injected aliveness, and a visceral understanding into the language. Names have been changed:

“Much of my life has been sharing experiences; to help make others understand or communicate whether non-verbally or pre verbally.
One of the most hurtful experiences of my life was when an eminent professor of sociology said: ‘what separates men from beast, what makes a human being is the ability to use language.’

Finding environments where children and young adults with complex disabilities can relax more, so they can learn- so they can take in.
True environments where anything goes.
To be humble enough and free enough of time to set yourself aside enough to be that blank page- that is absolutely precious – extremely difficult to put into words.
Put down our ego and just be nothing, soft enough just to be.
Not knowing creates space.

There are also hidden institutions and hidden disabilities within all of us.

Ambient jam is the second time I’ve walked into an environment and this is Leah’s world (the other being a hospice); Leah is herself, Leah is one of the facilitators. Music, movement, receptivity, and being spontaneous, that’s what Leah is about.

Models of knowledge creates limits: channels things into narrow forms of sensory communication.
Relentless thing about exceptionalism
Ambient jam doesn’t work that way. It is the only place where I feel Leah can be herself.

Not changing the externals too much from session to session, expect consistency If you want them to continue from where they are, or got to.”

Finding the language to describe, map and advocate our non-verbal experience and perception has become an endeavour in itself; a creative and even political act. Hopefully it makes us better writers. Sometimes when practitioners and commissioners come together in a formal and public forum to talk about this work, passion (whether quiet, subtle or demonstrative) can be inhibited, maybe suppressed, as is talking from first-hand experience, talking from inside out. In describing this work to the outside world we can present a face. How much does this then contract thinking, connectivity and discovery? When first-hand experience and articulate objective language align in one person, you can only listen and feel the value of this area of work. Articulate ‘non-verbal’ communication needs articulate verbal communication to walk side by side with it, each stretching the other.

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