‘Behind closed doors’ is an idiom that has taken on significant meaning, attempting to encapsulate the loneliness, segregation and isolation that comes with disability. Documentaries, exposés and multiple reports within Australia have used the phrase to highlight the abuse and neglect of people with disabilities that is so often shrouded in secrecy.
For my mum, ‘behind closed doors’ takes on a very literal meaning. Living with a variant of Guillain-barré Syndrome (GBS), mum is paralysed from the neck down. Unable to move or signal for help if needed, having the door to her room closed on her presents unimaginable fear. It’s a barrier that cuts off care, cuts off communication and cuts off what little autonomy she has. It leaves her helpless.
Mum lives with a tracheostomy, percutaneous endoscopic gastrostomy (PEG) tube and catheter that allow her body to function at its most basic level. She requires one on one nursing, every hour of every day. After ten months, she remains in a medical ward of a regional hospital waiting for respite placement. She is abused and neglected by a system that is so understaffed it cannot provide the one on one care she needs.
As her Enduring Power of Guardianship (EPG), I have spent these last ten months fighting on her behalf for a standard of care that provides her with the assistance she needs. I have watched the abusive and demeaning treatment she has been subjected to on multiple occasions. Documenting and writing about mum’s treatment is an important exercise is uncovering the violence endured by people living with disabilities.
One of the first instances of abuse we recorded was in February. Mum had a nurse ring me up then leave her room so she could talk to me on the phone privately. She told me that a nurse had hit her, and that she was scared for her safety. Unable to move, she is defenceless if she were to be physically assaulted. After calling and filing a complaint with the hospital, I received a phone call telling me that mum’s account of the incident had been “a hallucination, initiated by a change in medication.”
The assault wasn’t taken seriously until it had happened a second time. I was back home visiting mum, and when I entered her room she was distraught and crying. She told me that this same nurse had again hit her, turned her TV off and closed the door on her so that she was isolated from the rest of the ward.
Throughout March, April and May this process would repeat itself. Mum would ring me tell me that a nurse had laughed at her, joking that she was unable to walk and care for herself. A more distressing example was when a junior doctor had told her that if she were to suffer cardiac or respiratory arrest like she had in the past, they “wouldn’t bother saving her” and would “just let her die.” In a similar vein, senior doctors joked about euthanasia and how “unfortunately it was not legal in NSW.” I tried again filing a complaint with a social worker without any response — the social worker responsible for mum had changed again, and incidents like these had been lost in the handover.
In June I visited mum and would take her for walks in her wheelchair outside. The sun felt nice on her skin. When we would come back inside, we would wait upwards of an hour for staff to move her back into bed. She would sit in her chair uncomfortable, often writhing and crying in pain, often forgotten about until I again reminded staff that she was there and needed care.
Last Friday I was back home visiting and took the opportunity to meet with our latest social worker (the turnover between social workers, often without notice, is another way in which the healthcare system works to destabilise disability care). Both mum and I asked if the social worker could organise counselling — for both past and current trauma — that is having a profound impact on her welfare. Instead of fulfilling their duty of care, counselling has been refused, because “hospital should be a happy place” and “that can wait until you find respite care,” even though we’ve been waiting ten months and could wait ten months more. It isn’t a happy place.
These are only snippets of what it’s like living behind closed doors for people with disabilities. Abuse is institutional and not limited to any one person — chances are every person living with a disability has a horror story to tell like these.
The common thread that links everything together is not evil people or nurses hell bent on abusing and neglecting people with disabilities. It’s a desperately underfunded system that stretches staff to the limit, meaning they have to leave one on one patients alone for hours. It’s a system that deliberately makes it as hard as possible to apply and receive support from Centrelink like the Disability Support Pension (DSP) and receive funding from the National Disability Insurance Scheme (NDIS).
Most of my phone calls with mum now end with “you have to get me out of here.” Every day I watch new abuse unfold. The system would rather have people with disabilities dead than be able to live meaningful lives. They deserve justice.