Another possible submission to the Royal Commission

NOTE: This is another one of my short articles that, among other things, gives expression to some or other aspect of my condition and the difficulties I face in getting these matters corrected. In previous articles about my physiology my concern is to describe the kind of progressive reduction that comes about under a degenerative muscular condition such as Friedreich’s Ataxia. Here I focus upon a problem with technology and how the problem interacts with my disability. I hope these articles can be helpful to others undergoing similar circumstances and assist carers and family members to devise creative strategies to overcome the persistent frustrations (P.G)

A buzzer system that does not suit at all

In the shared accommodation facility where I reside, the buzzer is an issue. It has been one focus of my ongoing complaint to the facility’s management. It therefore represents an ongoing managerial issue and I have had to deal with it for many years. The “buzzer problem” remains unresolved. I have continued to communicate with various staff members about it, and I am still yet to see a satisfactory outcome.

Let me include excerpts of different emails and articles where I have directly and indirectly talked about this issue. This post is therefore a chronicle giving the “documented history of the buzzer problem” from earliest to latest written sources.

The following is from “Where is the dignity in my future my choice?”, appearing in OnLine Opinion on 12th March, 2013:

“Just consider: one day, at around 8pm the staff came to my room to deliver mail and they found me half out of my chair lying on the floor. I had fallen into that position an hour earlier. It left me in a position where it was impossible to reach the buzzer and here I was vomiting and yelling for one hour. I had just finished dinner.

In other words: I know very well what care I need. I am all too aware of the vulnerability of my situation. I just hope my new DSR level can now ensure a better level of safety.”

Further to this is a similar situation, that I had to undergo in the same year. This time, it was also a matter of suffering intense physical pain. This is from “Standardizing disability” in OnLine Opinion 5th April, 2013:

“Let me provide an example from my real-life experience that occurred on Tuesday evening the 19th of March 2013. This is an account of another incident when, once more, I fell out of my wheelchair.

It was just after dinner. I need to empty my bladder, and as usual, my carers set me up in the appropriate way. But in so doing I slumped out of my chair, falling to one side. After waiting five minutes for the staff member to return, I decided to try to make myself a little more comfortable by moving a bit. But that movement had the opposite effect – my body involuntarily flung me forward and … crack. My hip was broken.

The staff-member arrived 30 seconds after this happened and I was in great pain and I finally conveyed to them that they should ring for an Ambulance to take me to the hospital.

I repeatedly requested that I be taken to a private hospital as I had Private Medical Insurance Cover. But due to my slurred speech and being in a lot of pain, they had very little chance of understanding what I was trying to say.

They brought me to the Dandenong Hospital where I was X-Rayed and so my broken hip was discovered. They gave me pain relief and so I felt more comfortable for an operation the next morning.”

In this chronicle I could include many more incidents like these ones that occurred between 2013 to 2018. However, and unfortunately for me, my old computer which contained many of my earlier documents and emails “spat the dummy”, so to speak, and as a result I lost all my written documents.

More to the point, my inability to function adequately in relation to the physical capacity needed to operate a buzzer should not be overlooked. In other words, simply providing me with a buzzer is in no way a solution. Buzzers need to be pressed. And before they are pressed they need to be seen and they need to be in a position where they can be activated.

So, I know more about myself and my needs than any large bureaucracy ever will. I use the ongoing issue of my buzzer as yet another example which demonstrates that the current disability care system with policies that standardise and stereotype most disabled people can too easily miss the point. Technology is not, of itself, a solution.
The standardisation and stereotyping is more regularly evident in the work practises of those living in group homes. The current system is not designed to effectively care for people with disabilities and at the same time take into account the diversity of disability.

From my personal point of view, my disability is vastly different from the other residents living in this group home, and there is no doubt that I need different methods of communicating and technologies to alert staff. So then why hasn’t this difference, or this diversity of disability, been considered by the managers when implementing their care? Why has the buzzer system become such a brain teaser for management?

Let us look a little deeper here. Let us examine the situation empirically. The buzzer system that I am required to make use of comes in the shape of a white box with a triangular green button. When the green button is pressed, a small LED light flashes red. No noise is emitted by this buzzer.

Everyone in the house is given this buzzer, and I assume this is standard practice for this facility. Sure, it is easier for there to be one buzzer system that connects all residents to all staff, but what if the buzzer itself is not compatible with me? I am not able to see the white box with the green button. My increasing blindness (which the managers are well aware of) makes it difficult for me to see small objects, and even worse when the colours do not contrast. Because there is no noise emitted when you press the buzzer (unlike my old buzzer which rang loudly when pressed), I have no way of knowing if I have actually pressed this buzzer or not.

Why then is this system in place? It is supposed to help me, but it is doing the complete opposite. If I need assistance, I have to sit in uncertainty in my room, not knowing whether I have pressed the buzzer or not. Why am I still made to use this buzzer when it is clearly not beneficial to me in any way?

The following was sent from me to Sandra Knight and Donna Roberts on the 6th of November 2018: “I cannot imagine such incompetence at giving me a buzzer and putting it on my desk and not telling me about it, as you should know I am blind and with no mobility. My independently contracted support worker Ikemi has just found the buzzer on my desk. Why was I not told about this earlier?”

On the 28th of May 2019 I wrote a message to Donna Roberts which said “The problem concerning the buzzer system will not go away and is only becoming intensely worse, as now I cannot even see the buzzer well. Can you help or have you done all that you can according to what is required of you under the legislation?”

My point is that the present buzzer regime simply does not suit everybody; it certainly does not suit me.

Donna is an excellent person and friend, and has been trying very hard especially at present to help me. But is it too little too late? This one issue with the buzzer has been compromising my comfort and safety in this group home for almost 7 years…

I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.

PETER BOOK POSTER FINAL

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

You can also order directly from me.

Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer. My gratitude also extends to my phenomenal team of academic support workers. Firstly, Christina Irugalbandara whose work means so much to me. Daniella De Bruin whose brilliant and caring nature means so much to me.  Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least Mercy Ndegwa who’s continually teaching me how to be a better person.

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Author: petergibilisco

Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

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