A Certain Loss of Control, That is to Make Me Feel Punished.

Are all humans told they must live their lives in the same way? Then what about those humans with severe physical disabilities who are unable to control their own lives, with the dignity of purpose and determination? The different abilities of those in group homes, like mine, that cannot be standardised, but for some ridiculous purpose, usually neoliberal, are. For example this gives me a certain loss of control, which is to make me feel punished.

To illustrate this, I will talk about something that happened to me very recently. I was down with the flu in the past week, and I have been receiving inadequate care and support to keep me safe from physical injury and harm.

For example, last Thursday night, I stooped out of my wheelchair, leaving me in great pain; this happened to me a total of three times that evening. And unfortunately, the way I had stooped made it impossible for me to press the buzzer to alert staff, and the only way for me to support myself was through an off the cuff pop-in from a support worker. This left me in greater pain, with the added weight of dealing with the flu at the time.

On Friday night, unbeknown to me, I was left with three support workers who could not understand a word I was saying. So, this meant that I had to wait until 8:30pm for a support worker who was capable of understanding me, to arrive. So I had dinner, and went straight to bed at this time.

So then, the big feature: the worst day of this weekend. Yesterday in the afternoon, I stooped out of my wheelchair. Of course by this stage I was feeling very tired, and was thinking the only way for me to feel relaxed was to pull myself by the sides of the table to make the wheelchair fall; this was to put me in a more relaxed position. Again, I had to do this by myself. When I fell, my feet pulled the buzzer cord, which alerted the staff.

This has all had an extraordinary effect on my heart, which is something I will have to have more check-ups about this week. Hence, this weekend has been a manifestation of the loss of control that can lead to me feeling punished. It is a result of the lack of dignity and choice I have, living in a group home.

A special thanks to Christina Irugalbandara for her excellence in academic support work.

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Author: petergibilisco

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

1 thought on “A Certain Loss of Control, That is to Make Me Feel Punished.”

  1. I feel your pain and anguish at being at the mercy of inadequate care and your loss of autonomy of being in a residential home. Although very physically disabled myself I am still able to live alone in my own home. If the time comes when I can no longer look after myself I would rather not go on as I have experienced a complete lack of understanding about my condition from doctors and nursing staff when in hospital and rehab after 2 falls 2 years ago. I have a rare autoimmune disease, Transverse Myelitis, which attacks the spinal cord and as the myelin sheaths are destroyed I have extensive neuropathy from just above waist downwards so that if any one touches me it is painful – like an electric shock. Unfortunately I am very allergic to many medications especially opiates and there is no cure for spinal cord injury. I live in hope that stem cell therapies and bio-technologies will come up with some thing that is proven to work within next 10 years, as I am not getting any younger and have been following the research for 10 years already. It seems to me that those medical professionals, nursing staff and carers for those with a disability generally have little or no training concerning those with rare diseases and how to meet basic physical needs whilst also providing emotional support and enabling as much independence as possible. It is left up to us, the patient/client to educate them, but it sometimes feels like fighting a losing battle. I do hope you can find the strength to keep going and find some things to do each day that can bring joy.

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