We're working on the WA Disability Abuse Inquiry, and the stories are starting to flow in. Stories of violence, abuse and neglect in Western Australian institutional and residential settings - some historic, some recent.
And everywhere, Peta, I hear your story.
From Peta's Coroner's Finding - 'In 2008, following a period of physical unwellness, the SCGH Emergency Department would not accept the deceased for assessment without being satisfied that there was a need for medical intervention.' You became so agitated, Peta, when they tried to take blood from you at Graylands that you suffered a cardiac arrest, and ended up in ED anyway. You had some serious health problems - I wonder how much less serious they would have been had you been able to access medical treatment.
That theme of silos, of disability versus mental health versus health - those themes are repeated throughout the other stories we hear every day. The ED is not a place for us, no matter whether our bodies are the same as other bodies. They are not built for us, so we are denied health, or mental health. The stories, one, two, ten of them - all the same. Not places for us.
The hospital told Graylands that you should only be examined when there was 'an acute medical need'. That they should smuggle drugs into your food so your heart did not arrest again. And I read the lines about how you were 'at risk of sexual exploitation' and wonder what made you so fearful that your heart would stop dead in its tracks - literally - when you were touched by another human.
The Findings say that you had a crush fracture of the vertebrae - from your initial diagnosis of a healthy young autistic girl, you had medical issues that were not addressed that were exacerbated by treatment. I wonder how you acquired that T7 crush fracture - it is another theme, that of unexplained injury. Or injury that might be explained, but never satisfactorily. The Finding says you had pain, significant pain, caused by your compressed spinal cord and consequent paralysis, but they decided not to operate. You might not cooperate with rehabilitation following surgery, they said. And so you were 'managed conservatively' - a horrid little sentence which does not in any way infer neglect, even passive neglect. We left you in pain, because it was too hard, those two words said. We did not know how it would turn out, so we did not do anything.
That was the theme for the rest of your life, and for the lives of others. You were referred to Nulsen, and Brightwater, but your 'referrals were declined'. Too tricky, Peta. You cannot be physically disabled AND autistic, nor intellectually disabled and mentally ill. Those places are places for others, and not for us. And so you stayed and stayed and stayed, until it happened.
Most of the stories we are hearing do not chart the death of a person with a disability. But your death is charted in such detail, such horrifying detail, that each carefully recounted word falls with enormous weight. I read the facts, written with care by your unofficial biographer, the Coroner. And I wonder what has not been written.
The Finding tells us that they had to drug you on Christmas Day. You were anxious and agitated, it says. But it does not tell us if anyone bought you a Christmas gift, nor if anyone cared enough to visit.
It tells us that by the following day, you were screaming over and over and tearing the bed linen and clothing. You were banging your head, crying, and the 'extra medication was having little effect'. A line, delivered chillingly, says that 'due to the lack of mobility, these behaviours did not interfere with the management of the facility as much as they had previously'.
I wonder if they shut the door against your screams, or if anyone thought of calling a doctor. Whether the usual staff were away on Christmas break, and whether the people around you knew that you did not generally act like this. I wonder if anyone spoke to you, if anyone held your hand. I wonder if there were tinsel stars pinned to the walls in the office, and whether you knew anything outside of monstrous, unending pain.
Someone checked you that night, it says. You had a swelling on the side of your face, but you 'refused examination'. Your lips weren't swollen, and they thought you perhaps had a toothache. They gave you an antibiotic and an antihystamine in case it was an infection or allergy, and monitored your breathing. And by the morning, someone noticed that your right eye was bruised. The assumption was made that you had a dental abscess or cellulitis.
And then nothing is stated, nothing at all...but if you count the days, the 25th of December to the 31st, it was days and days til someone noticed that you had not slept, that you had been 'lying on your bed cradling your head in your hands'.
I wonder how long those days were for you, Peta. And the days for all the others who were refused medical treatment or cared for in institutional settings. I wonder what happened to you during those long days and nights, til that time on the 3rd of January when someone noticed you were 'chesty' and called a doctor. I wonder what the nurses said when you 'screamed whenever they approached' and whether they cared that you were in pain, whether you had allies or people who had known you a long time. And I wonder if they were shocked when you stopped breathing, when your heart stopped, when they started it again and found out that you were damaged beyond recovery.
I wonder who sat with you when they got permission from your guardian, the Public Advocate, to turn off the life support machine. And who picked out your clothes to bury you in. Whether there was a funeral service, and whether someone 'said a few words'. I know the funeral was carried out by Seasons in Belmont, but there is no record of whether anyone attended. I wonder who designed your tombstone, and why the name of your family was not engraved upon it.
I wonder why they could never find your brother.
All those places - they were never places for us, the good places. The only place that you could access was the graveyard, where you were buried according to your religion, without family nearby. I wonder how many others lie there.
I want to find out.
And everywhere, Peta, I hear your story.
From Peta's Coroner's Finding - 'In 2008, following a period of physical unwellness, the SCGH Emergency Department would not accept the deceased for assessment without being satisfied that there was a need for medical intervention.' You became so agitated, Peta, when they tried to take blood from you at Graylands that you suffered a cardiac arrest, and ended up in ED anyway. You had some serious health problems - I wonder how much less serious they would have been had you been able to access medical treatment.
That theme of silos, of disability versus mental health versus health - those themes are repeated throughout the other stories we hear every day. The ED is not a place for us, no matter whether our bodies are the same as other bodies. They are not built for us, so we are denied health, or mental health. The stories, one, two, ten of them - all the same. Not places for us.
The hospital told Graylands that you should only be examined when there was 'an acute medical need'. That they should smuggle drugs into your food so your heart did not arrest again. And I read the lines about how you were 'at risk of sexual exploitation' and wonder what made you so fearful that your heart would stop dead in its tracks - literally - when you were touched by another human.
The Findings say that you had a crush fracture of the vertebrae - from your initial diagnosis of a healthy young autistic girl, you had medical issues that were not addressed that were exacerbated by treatment. I wonder how you acquired that T7 crush fracture - it is another theme, that of unexplained injury. Or injury that might be explained, but never satisfactorily. The Finding says you had pain, significant pain, caused by your compressed spinal cord and consequent paralysis, but they decided not to operate. You might not cooperate with rehabilitation following surgery, they said. And so you were 'managed conservatively' - a horrid little sentence which does not in any way infer neglect, even passive neglect. We left you in pain, because it was too hard, those two words said. We did not know how it would turn out, so we did not do anything.
That was the theme for the rest of your life, and for the lives of others. You were referred to Nulsen, and Brightwater, but your 'referrals were declined'. Too tricky, Peta. You cannot be physically disabled AND autistic, nor intellectually disabled and mentally ill. Those places are places for others, and not for us. And so you stayed and stayed and stayed, until it happened.
Most of the stories we are hearing do not chart the death of a person with a disability. But your death is charted in such detail, such horrifying detail, that each carefully recounted word falls with enormous weight. I read the facts, written with care by your unofficial biographer, the Coroner. And I wonder what has not been written.
The Finding tells us that they had to drug you on Christmas Day. You were anxious and agitated, it says. But it does not tell us if anyone bought you a Christmas gift, nor if anyone cared enough to visit.
It tells us that by the following day, you were screaming over and over and tearing the bed linen and clothing. You were banging your head, crying, and the 'extra medication was having little effect'. A line, delivered chillingly, says that 'due to the lack of mobility, these behaviours did not interfere with the management of the facility as much as they had previously'.
I wonder if they shut the door against your screams, or if anyone thought of calling a doctor. Whether the usual staff were away on Christmas break, and whether the people around you knew that you did not generally act like this. I wonder if anyone spoke to you, if anyone held your hand. I wonder if there were tinsel stars pinned to the walls in the office, and whether you knew anything outside of monstrous, unending pain.
Someone checked you that night, it says. You had a swelling on the side of your face, but you 'refused examination'. Your lips weren't swollen, and they thought you perhaps had a toothache. They gave you an antibiotic and an antihystamine in case it was an infection or allergy, and monitored your breathing. And by the morning, someone noticed that your right eye was bruised. The assumption was made that you had a dental abscess or cellulitis.
And then nothing is stated, nothing at all...but if you count the days, the 25th of December to the 31st, it was days and days til someone noticed that you had not slept, that you had been 'lying on your bed cradling your head in your hands'.
I wonder how long those days were for you, Peta. And the days for all the others who were refused medical treatment or cared for in institutional settings. I wonder what happened to you during those long days and nights, til that time on the 3rd of January when someone noticed you were 'chesty' and called a doctor. I wonder what the nurses said when you 'screamed whenever they approached' and whether they cared that you were in pain, whether you had allies or people who had known you a long time. And I wonder if they were shocked when you stopped breathing, when your heart stopped, when they started it again and found out that you were damaged beyond recovery.
I wonder who sat with you when they got permission from your guardian, the Public Advocate, to turn off the life support machine. And who picked out your clothes to bury you in. Whether there was a funeral service, and whether someone 'said a few words'. I know the funeral was carried out by Seasons in Belmont, but there is no record of whether anyone attended. I wonder who designed your tombstone, and why the name of your family was not engraved upon it.
I wonder why they could never find your brother.
All those places - they were never places for us, the good places. The only place that you could access was the graveyard, where you were buried according to your religion, without family nearby. I wonder how many others lie there.
I want to find out.