Disability Action Week 2020 – A heartfelt reflection

To celebrate Disability Action Week 2020 and its theme Access-Ability: Making things better for everyone, we spoke with Stellar Arts Visual Program facilitator, Margie.

Stellar Arts is a vibrant and exciting collection of creative workshops designed to support those 17-64 years of age who are living with a disability. Our online and in-person workshops are led by qualified artists and musicians and include singing, drumming, visual arts, yoga, drama and magic.

Margie shares with us her heartfelt experience and communication breakthrough with Matthew, a resident at our supported accommodation community - Asher House.

I was delighted to see Matt on my first face-to-face visit after lockdown had finished here in Queensland. We had a project to finish for his Aunt - a large glistening canvas of gold with pastel coloured stripes and dabs - that he had painstakingly painted with a brush in his mouth. To support him further, I had learned a rhythm and the pressure needed to assist Matt to create his vision by holding the canvas near his face which seemed to be going well.

However, Matt whizzed straight past me with his visitor trailing and didn’t return my greeting. I didn’t see him again until the end of the workshop. He accompanied his niece out and then found a support worker to spell out a message for me. Matt has limited movement and will flick his eyes up for a ‘yes’ as the staff patiently spell portions of the alphabet and record his message on a whiteboard. My inability to smoothly perform this method of communication had been a source of frustration for us both in the past. He explained that he had a family visitor, and I jumped in to reassure him that I didn’t have a problem with prioritising family.

The support worker gently gave me the more important second part of the message. Matt’s mother had died during lockdown.

I turned his wheelchair away from the large room and held his hand. I cried with him until he had let his wave of grief out and suggested we could paint a picture to remember his Mum. I had a heart shaped canvas at home that I would bring in the next week, I suggested. Matt flicked his swollen eyes upwards as we parted.

The next week Matt was waiting for me when I arrived brandishing the canvas. He hurried over to our work area and when I caught up with him he used his onboard communication device to tell me his plans.

We drew our plan and we made good progress with our first coat of dark green on our heart shaped canvas, and then moved to finish our other canvas in progress.

The next week, Matt’s device greeted me with the news that the dark green needed another coat. His frustrated moments were growing fewer, and staff spelling assistance was needed less.

Last week we had a breakthrough that nearly escaped me. I had remarked to Matt that I suspected that all the marks on the canvas symbolised something about his Mum. He opened a document that he’d already completed, which explained the significance of each mark on the canvas. I’ll leave that between Matt and I, except to explain the specific 11 purple dots are Matt’s nieces and nephews.

I then asked Matt his age, I was curious. He strained and turned his computer screen on with one of the two switches that are placed in his hands when he is settled into his beast of a wheelchair. Using his switches to move his cursor, Matt’s device announced he was 48 years old. “Ten years younger than me!” I bantered.

It was only later, as I packed my trolley and waved goodbye to the residents who were enjoying their dinner, that I realised we have finally cut out the middle-man in our communications. Only a year’s effort from us both! But it was well worth the wait.

Here at Wesley Mission Queensland we are privileged to care, support and listen to clients, staff and families to learn theirs. Because your story is our story. To learn more about our services visit our  webpage.