First printed in ECAPSS Newsletter April 06.

Many people may believe that it is not possible to have a conversation with somebody who does not use or understand speech. However it is possible to have wordless conversations.
The following article describes one of the types of wordless conversations that can be had.

• “Pro-vocation”
pro-1 prefix 1 favouring or supporting …. 3 forwards… 5 onwards.
vocation n. …. 2 a a person’s employment, esp. regarded as requiring dedication. (Employ 3 … keep (a person) occupied.)
provocation – provoke v.tr. 1a rouse or incite … b incite to anger …. 2 call forth; instigate …. 3 tempt; allure. 4 cause, give rise to.
The Australian Concise Oxford Dictionary (4th ed.).(2004). New York: Oxford University Press.

It’s an interaction seen often between adults, children, and infants. We tease, we tempt, we joke, we encourage. We generate a response from another person. We bring forward (pro-) and a state of being occupied (vocation) in another person. We engage them. Sometimes we engage by asking questions, telling stories, sharing successes. Sometimes we engage by provocation. We may tempt a response from somebody or even incite a small anger.

Pro-vocation can be a valuable way to enhance communication and participation.
Consider the following scenarios:
Scenario 1
1. X shows an object to Y.
2. Y demonstrates an interest in the object.
3. X holds the object just outside Y’s reach.
4. Y demonstrates frustration and more effort to reach the object.
5. X grades the distance so Y can successfully reach the object.
Scenario 2
1. Y is enjoying an object.
2. X removes the object from Y.
3. Y demonstrates frustration or pleasure with the removal.
4. X tempts Y to reach for it.
5. Y reaches out for the object and successfully gets it.
Scenario 3
1. Y is enjoying an object.
2. X reaches towards it.
3. Y pulls the object away.
4. X grasps the object.
5. Y continues to pull the object toward themselves.
6. X pulls at the object with a little force, but not enough to remove it.
7. Y pulls to hold it.
8. X lets go.

There are lots of different names for these conversations. We could call it “tug-of-war”, “you can’t-get it”, or “ooh… ooh… ooh… you got it!”. These are all conversations that may be useful for adults who have early communication skills.
Two types of responses of the person may occur:
1. The person may demonstrate a behavioural (or emotional) response such as surprise, agitation, pleasure.
2. The person may be provoked into action towards you or the object, such as looking at you or reaching to the object.

There are some important rules in pro-vocation.
• Incitement of frustration must be used sensitively. Do not incite the person if you feel that they may become angry.
• Pro-vocation must be balanced with the feeling of success. Celebrate when the person successfully gets the object from you. “You’re so strong!”
• Balance pro-vocation with other interactions, like just quietly sitting together or playing unchallenged.
• Only use pro-vocation with people that you have built a trusting relationship with. An important feature of tease is that the person knows that it is play and that you are
conducting the interaction with respect and good faith.
• Do not do pro-vocation with ill-thought, or if you believe that the person may believe that you are doing it with ill thought. This is not encouraging participation.

Has this article pro-vocated you?

Sheridan Forster

sit down and have a chat

In the process of recruiting for my research, I have been popping into more residential services. Everywhere I go the first thing I notice is if the main living area has height adjustable stools or not. I am a huge fan of the height adjustable stool. If you see height adjustable stools, you see people sitting down with people with PIMD. If you don’t see stools you don’t see people sitting down with people as much.

I love height adjustable stools (ones that have a small round seat and a gaslift) because:

– you can move them in really close to a wheelchair and if you a bit flexible you can move your legs around the wheelchair too and get your face nice and close to people who need it

– you can get the height right (although yesterday I was interacting with somebody who was very small, in a very small wheelchair, and in order to get my face under hers I jsut had to resort to the floor)

– the stools are brilliant for helping people with eating, reducing the twisting, turning, reaching, and stimulate optimum chin position in the person you are assisting because they don’t need to look up at you

– they can move easily in or out when interacting with people (which can be very useful with people with startle reflexes)

Things to think about when you are looking at stools.

– look at the range of height (some don’t go down far enough to get your head level with the person you are interacting with)

– look out for the broadness so you can get in close

– look out for foot rests (these can make it harder to get in close)

– look out for smoothness of movement – you want them to move around easily so you can get to where you need to and you can push them aside when not needed.

In the photo you can see Leendert and Afke, two great people I met in Noordenhaven, an institution in the Netherlands. Stools were available everywhere so staff could sit down and spend time with people.

Transition to adulthood

One of my favourite presentations at IASSID was by Krysti DeZonia, from the USA. Krysti presented her doctorate work looking at school to adult transition for people with PIMD. She asked parents and teachers, separately, how they conceptualised the person’s adult life. She also looked at the relationship between various expectations and the sort of reports people write.
Many of the parents and teachers thought that adult life was going to be sad, lonely, and hard, with a fear of students being warehoused, underchallenged, and unable to find appropriate supports. Parents’ priorities were for the person to have personal fulfilment, be with people who love them, and be part of life, not an observer. Whereas teachers were more about getting into services, and their in-class goals reflected laws and artifacts governing education. Given this different priorities the expressed goals in plans often did not match.
In her thesis, Krysti notes parents thoughts around the preferred activities of their transitioning child: “These varied depending on the child, but all children had activities that the parents believed bring them pleasure, and parents were not concerned about how functional or age appropriate these activities are” (p. 80).
This research has implications for families, educators, and for adult services. I work one day a week for adult services, and reading the despondency expressed by these parents and educators (although in USA), effected me. Firstly, are services giving the message to schools that all is not dark and horrible upon finishing school? Secondly, are services delivering on what people really want? In Krysti’s study parents “simply discussed their desire that their child has a place in the world where he is respected, happy, and loved”. Where are these priorities sitting in service provision?
I would love to see a study similar to this conducted in Australia looking at adults with PIMD in services.

PIMD IASSID Cape Town

My apologies for no blogs recently. The problem has been that I’ve not known where to start and I’m also experiencing some post culture shock from being in South Africa. Two weeks ago I was at the IASSID (International Association for the Scientific Study for Intellectual DIsability). At the conference the PIMD special interest research group managed to pull together a pre-conference workshop and numerous symposiums specifically looking at people with profound intellectual disabilities. Now selecting what to share is difficult, so I thought I’d side-step and instead share some quotes from Nelson Mandela that are relevent to people with PIMD.
“We accord a person dignitiy by assuming that they are good, that they share human qualitites we ascribe to ourselves”
“People are human beings, produced by the society in which they live. You encourage people by seeing good in them”
“It is what we make out of what we have, not what we are given, that separates one person from another”
“I am what I am both as a result of people who respected me and helped me, and those who did not respect me and treated me badly”
sheri