“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…)


Tis’ the season to… issue trigger warnings around shopping centres

In the area of profound intellectual and multiple disabilities we often talk about sensory focused practice: approaching people being mindful of their sensory preferences and challenges.

Today, I opt for a no-sense day. No, not a nonsense day, a no-sense day.

You see, yesterday my sensory system got flooded.

KMart should have warning signs: warning music will be louder (actually or just felt), your visual system will be bombarded with restocking of all the christmas crap, your proprioceptive and vestibular system will be shocked as you don’t know how to dodge the staff unstocking all the stuff with their boxes (and your won’t know how to find that copy of Bad Guys 5 because your memory will go into shut down), even your sense of smell is going to be attacked as the dial for everything is turned up.

You will go home, take migraine tablets and painkillers because your neurological system will cross all of the wires.

So today, I choose no-sense. All sounds will be barely audible, curtains will be drawn, smells will be nuetral or safely chosen, movements calculated and minimised, brain switched to slow, low, no…

I am thankful that I can choose and shape my no-sense day.

I understand why people hit out, bite, scratch, scream, bang their heads – desperate attempts to either control their systems or the explosions that come when control can not be gained. To hit, to scream, to run, to panic when the flood is uncontrollable.

Wishing everyone either the ability to regulate themsevlves or to be surrounded by insightful, empathic, educated, ambassodors to do the regulation when a person can not do it themselves. A hand to hold when the world is fragmenting; a guide rope to return to safety.

Intensive Interaction and those who appear to avoid engagement

Sometimes I long to return to the UK where, while they are struggling with many of the same issues as we do in Australia, there are a greater number of communities of practice, professional development, policy engagement focusing on people with severe and profound levels of intellectual disability (or learning disability as known there).

Here is one of the great upcoming opportunities that I’ve cut and paste from my inbox:

Dear Intensive Interaction practitioners and advocates,

This is a reminder about the 2019 Intensive Interaction Weekend Workshop: ‘Using Intensive Interaction with people who exhibit demand avoidance’ from Friday 18th – Sunday 20th October, at Hill Top Farm Barn, Malham, North Yorkshire. We still have a few final places left to fill. This inexpensive (just £95!) development event focuses on using Intensive Interaction with people who, to some degree, actively or passively avoid engagements with others (but don’t necessarily have a diagnosis of PDA!). Over the weekend we will look to address the following three issues:

  1. Why might demand avoidance occur for some of our learners or service users?  
  2. 2. How might demand avoidance be presented?
  3. How might  Intensive Interaction help us work with people who present with some level of demand avoidance?

I have attached an application form for this event above, but if you would like more information please don’t hesitate to contact me at: graham.firth@nhs.net or by phone at 0113 8555162.