“Like a two-year-old”…

A colleague reflected the discomfort telling us of the father of a 15-year-okd who had described his son a like a two-year-old… such a provocative comment… so many feelings and thoughts.

Using analogies to infants and children in the intellectual disability world… seems so often to go hand in hand with a tacit response, unspoken but shared.

But not all responses are the same. Not all intentions in uttering the words are the same. Not all interpretations of meaning are the same.

Hoping we can have a conversation to explore the use of age analogies, not to come to the “right” answer, but to understand different perspectives and the thinking (surface and deep) underlying the feelings.

I know I often stand as an outlier in using analogies of age. I know I need to unpack why I do this, and whether I should continue to do so. Can I encourage you to share your thoughts here on this often contentious topic… I will share some of my thoughts as a comment, as to keep the starter post neutral.

5 Good Communication Standards – The vital ingredient

I’ve had the pleasure of talking with many people about the Royal College of Speech & Language Therapist’s 5 Good Communication Standards (here is a link to the full standards, but there are also several other presentations of it and a couple of videos). They were written for residential and hospital settings where people with intellectual disability and or autism lived, in the UK.

The 5 standards are:

Standard 1: There is a detailed description of how best to communicate with
Standard 2: Services demonstrate how they support individuals with communication needs to be involved with decisions about their care and their services.
Standard 3: Staff value and use competently the best approaches to communication with each individual they support.
Standard 4:Services create opportunities, relationships and environments that make individuals want to communicate.
Standard 5: Individuals are supported to understand and express their needs in relation to their health and wellbeing.

What is the vital ingredient, you may ask?

In my mind, the vital ingredient for being able to work or and achieve the standards is valued the relationships held been support staff and people with disabilities. The standards can not be achieve if these relationships are not valued.

That may sound simple, but what do we do in environments where staff are told “you’re just a staff member, not family”, “we don’t want them to get attached”, “you can offer your opinions in the person’s planning because your paid”, “the person should have relationships with people who aren’t disabled and aren’t paid”. Each of these statements serves to devalue the staff-person being supported relationship. Each statement threatens to dehumanise the genuine relationships that occur often over many years.

So on one hand, there are standards that say “the relationship, knowledge, skills, attitudes, hopes, that you have with the person you support are core to the person’s quality of life – the safeguard the person and help them reach their best possible life – the model to others how to engage with a person who might not use or understand speech – they are necessary for a quality service” BUT on the other hand there are subtle and not so subtle stabs that are too often made that threaten the relationship, the quality, and the possibilities.

So perhaps hand in hand to any attempt to work on the 5 Good Communication Standards should be a deep evaluation of any ways that services, trainers, educators, and policy makers may be devaluing the support relationship…

“They’re just being lazy”

Guess what? Today I am too lazy to speak.

I have an acquired disability that effects my speech.

Right now I am in a cafe. Headphones on to block out sounds and centre myself to known rhythm music. I’m drinking in the smells. I am absorbed by single flavours, and have to think when I am ready to change tastes from one glorious taste to the next.

But I am too lazy to speak.

The waitress just pointed to the QR code to check in to the cafe. I slapped my head and signed sorry, as I’ve already been hear for awhile and had forgotten to do it earlier.

I ordered my drink by pointing the menu.

I scored a free vege nugget stick because I commented on facebook that I was craving them but didn’t want to change my Bubble and Squeak routine.

I ordered my main with its modifications using my Clarocom Pro typing app, with font large enough to see but not so large that I couldn’t fit the message on one screen.

You see, today I am too lazy to speak…

Because, when I am out speaking is damn hard work. My muscles tighten and words come out in a drawl. It is tiring.

I’m too lazy to speak, because speaking is hard work. I am too lazy to speak, because I would rather saver another 30 minutes out rather than letting one effortful sentence sap me of the energy.

I am too lazy to speak… and I am proud to be a part of a community that affords me the dignity to communicate in many different ways.

Voice – Leaving Allen Street

It was great to watch Leaving Allen Street on ABC Plus last night. I think they did a good job at capturing some of the meanings behind going from congregate care to living in a group home. There were many delightful characteristics – my 9 year old, watching at with me, commented, “I like him” pointing the guy that showed exuberance and delight in the move.
My interest, however, was also piqued by the tendancy to fade out the voices of people who were voicing, but it was either a vocalisation or or unintelligible speech. You may hear a few seconds of their voice then there would be a fade to the narrator.
I wonder why this was done. I guess common sense might suggest that the person wasn’t saying anything of meaning to the audience. I wonder if there was a perception that showing that might represent people in an undignified way. I don’t know.
Does it however reflect what might happen in everyday life – the intelligible is given preference over the unintelligible?
Just got me thinking… (but I won’t get started now of the absence of formal AAC systems and what that might say about the direction of service provision…)