Article 19 – Access Site for Audiences
A new multimedia performance exploring the United Nations Convention on Rights for Persons living with Disability (UNCRPD). Under construction by artist Janet Charlesworth.
The work is in Research and Development.
This site allows audiences to explore the script & described sound elements within the work anytime they like. The script is currently designed to be non-linear, and works instead to provoke moments of consideration.
You can use the below timeline of the work to explore these moments either prior, during or post viewing the work.
Sections are marked by timestamps and images can be used to position yourself within the work.
We would welcome and feedback from audiences as we continue to explore making this work accessible to a variety of audience needs.
SHOW START
Music throughout: industrial rhythm
[Voices are heard]
“Article 19 says that;
Disabled people have an equal right to live in and take part in the community.
Disabled people have the right to the same choice and control as non-disabled people.
Governments should do everything they can to ensure disabled people enjoy these rights.
Governments should ensure that;
Disabled people have the right to choose where they live and who they live with.
No disabled person should be forced into a particular living arrangement (for example, be forced to live in a care home against their will).
Disabled people have access to a wide range of support services (at home and in the community) including personal assistance to prevent isolation and support inclusion.
Disabled people can access the same community services as everyone else.”
00:30 – 01:30
[Repeated statements, lots of echoing voices overlapping]
“I don’t like conflict”
[An authoritative voice]
“Conflict makes the relationship impossible”
01:50 – 07:00
[Various overlapping voices continue repeating the following lines]
“I don’t like conflict it is a vicious circle and never ending”
“If something is bothering me… I prefer to stay quiet rather than speak up”
“If I cry out of anger, I look really weak”
“I bottle it up and it builds and then I lose my temper and just explode and get in trouble”
“When you do bottle it up the smallest, tiniest thing can send you over the edge”
“I just wish I didn’t say anything”
“It’s like putting someone else’s happiness before my own”
“I feel like a bit of a burden”
“You’ve got to ask someone for every little thing”
“I just wish I didn’t say anything”
07:00 – 11:00
[The smiling voices of Marketing and Sales layer over each other until the sound is not bearable any more ]
“Do you have a disability?
Do you think you would qualify for 36 plus minutes of home care visits?
If so, apply here!”
“All you need to do to win the disability premium package is to answer the following questions:”
“1. Can you wipe you own bottom?
2. Can you put on your own socks on?
3. Can you stand unassisted safely? “
“And Finally…..
4. Can you fully levitate for 20 seconds unassisted without the use of a hoist?”
“CONGRATULATIONS!!!!!
Your needs have awarded you the enhanced disability premium care package this includes two showers per week and leg shaving once monthly”
“We are very pleased to inform you that your support package has been increased too… 37 minutes twice per day!!!
Total increase 1 minute 32 seconds.”
“Congratulations!!! You are eligible for adult social care
There may be a fee… T’s and C’s apply“
11:00 – 11:30
[Sudden silence]
[No Spoken Word]
[Lips move on screen]
[No Spoken Word]
11:30 – 12.40
[Voices begin to overlap and repeat]
“Showers, twice a week”
[Many different voices]
“If you could only have 2 showers a day which days would you choose?”
“2.5 hours a day. 37 Minutes per visit isn’t that much time at all”
“It was calculated by a questionnaire and a calculator”
12.40 – 15:00
[Conversations between ‘officials’ and ‘clients’]
Official: What was in the letter?
Client: That the council are thinking of putting everybody who has care needs into residential care
Official: Does that include you? You fall into that bracket?
Client: Yes, I DO have some care needs. I need help with personal care things, and yes, that includes wiping my backside.
Official: You either do or you don’t. If you do fall into that bracket, you will be assessed as a person who’s in receipt of care?
Client: In a sense
Official: So you will be part of the group that have been given a residential home?
Client: Yes
Official: That’ll be good for you won’t it?
Client: No
Official: Why not? At least you won’t be sat at home with all this care nonsense. People coming in for twenty minutes and then leaving you there on your own.
Client: Because I don’t want that. I do have a life out here, I won’t in residential care
Official: You’re just being stubborn
Client: I can go out, I can watch what I want, I can do what I want. I’ve got nieces and nephews – would you want them running around a residential home?
Official: You’re just being silly now!
Client: I’m not being silly. I think that giving people the right to choice… is what makes us a democratic society. I don’t want to go into residential care.
Official: Well, yeah, you are, because that’s what the council are doing. Local government funding is being reduce. There’s no magic money tree. It has to come from somewhere.
Client: The very idea that we are having this conversation is frightening. Would you want to go into residential care?
Official: If you think it through properly and stop being so emotional about it you’ll be fine.
Client: Who put you in charge of my life?
Official: You have to consider cost. That is the cheapest option.
Client: It is cheaper for you if I live in my own home. I create jobs, you cut them
Official: You’re always complaining about your budget, just go into this home. You’ll have a bed, you’ll have people to look after you.
Client: You spend the day sat here and see how you feel.
Official: You won’t have to worry about your budget. You can come and go as you please.
Client: What about inclusion? The government has pushed for inclusion within society. Yet want to take away the right to live in your own home. It contradicts the point of an inclusive society.
Official: There isn’t enough social housing for all and even less are available that are suitable to be adapted
Client: I don’t want to be locked up. It is my right to live independently.
15:00 – 16:35
[Janet Charlesworth speaks…]
“My support plan was supposed to be reviewed every 12 months, but hasn’t been reviewed since August 2017.
I am scared to contact social services to request a review as I am worried that in doing so my support could be reduced especially if there is a shortfall in social care funding.”
[No spoken word]
[Slow music]
16:35 – 17:20
[Janet continues…]
“In 2017 I was told that the cost of my support package was more than my personal budget allowed for and that my social worker at the time had had to complete an ‘exceptions form’ to get approval from management for my plan to go ahead.
Can you imagine having to justify to a total stranger the need to shower every day, or even having a cooked main meal every day?”
16:35 – 17:20
[Heart beat soundscape]
[No spoken word]
19:30 – 24:30
[Janet continues…]
“Why, in the 21st century, am I met with surprise when I tell mainly members of the medical profession that I live on my own? Why do I then feel the need to justify it by saying, as if to put their mind at rest, that I have ‘carers’ coming in. Is it because they only see my disability, as the medical model does?
The medical model of disability sees my disability first.
It sees me as being sick and needing to be cured.
It would never be able to grasp the idea that… I may actually be happy with my life and my disability.
Admittedly I haven’t always been happy that I have a disability. I am the 3rd of 4 children and none of my siblings has a disability.
I used to wonder why it had happened to me. Now though, I wouldn’t want to be any different.
Not that the medical model would understand. The medical model wants to cure me and not change the environment that prevents me from fully participating in society.
It blames me for not being able to take part in activities to the same level as a person without a disability. It believes that the only way that I would be able to take part would be for me to be cured.
That’s never going to happen.
I have the right to live independently, and I do live independently, with the help of personal assistants.
Living independently means more than simply living alone. It gives me choice and control over what I do, and when I do it.
By forcing me to live in residential care, the government would be taking away my right to freedom, which is a basic human right. “
25:46 – 26:55
[A professional voice overlaps Janet…]
“Janet employs a PA to assist her with aspects of personal care that are deemed too high risk to do independently
Janet has a diagnosis of cerebral palsy
Janet requires support to ensure that her health and social care needs are met.
Janet is at a high risk of the decline of her physical/mental health and general well-being without the support of medical professionals.
Janet has a direct payment which gives her choice and control over her own care.
Janet is at a high risk of the decline of her personal hygiene, skin integrity and dignity without support with her personal care needs.
Janet is at a high risk of being unable to attend medical appointments independently due to her limited mobility.
Risks managed by: Managing medication independently
Organising own transport to and from appointments
Support plan to be flexible to meet Janet’s needs.”
26:55-29:30
[Sounds of coins clanking and an alarm going off ]
[These words are jumbled and spoken over each other with a heavy industrial beat behind the echoing spoken word]
“Compromise”
“I don’t like conflict”
“Other people’s circumstances force compromise”
“Conflict make the relationship impossible”
“I don’t like conflict”
“Compromise”
26:55- SHOW END
[Light piano music soothing and slow ]
[There is no more spoken word]
[Soundscapes of birds singing, children playing in the background]
