MEDIA RELEASE 28^th Feb 2013

Shame on Health Minister Skinner and MP Leslie Williams

MEDIA RELEASE 28^th Feb 2013

Shame on Health Minister Skinner and MP Leslie Williams

In 2007 my husband and father of our children, Don Mackay was killed by Medical Errors, Medical Negligence and subsequent cover up. This happened in a major Sydney teaching office. In 2010 I published a book called “Without Due Care” in order to expose what was done to him and how the health system worked to cover it up. (See my web page for further detail – www.withoutduecare.com ).

This happened under the NSW Labor Government. Before the Coalition came to power I was supported by Nationals Andrew Stoner and the National candidate for Port Macquarie Leslie Williams. Both of them became actively involved and spoke at my book launches in 2010. (I have DVD of their speeches). Jillian Skinner when in opposition bought a copy of my book from me when I was selling it in our local shopping centre and she was visiting. She was very polite and supportive, that time.

Now all three are in Government. I am in receipt of letters from Health Minister Jillian Skinner and Leslie Williams. Ms Skinner wrote “I believe there is nothing to be gained by opening this case for further investigation and consider the matter now closed.” Leslie Williams replied in almost the same words. Considering Ms Williams passionate speech at my book launch I am wondering what could have changed as she is now in a position to do something about it. If feels like hypocrisy to me.

We have a Health Minister and MP for Port Macquarie who find it acceptable and not worthy of justice that a frail disabled man was brutalised and killed in the shocking way my husband was and they consider “nothing is to be gained” but investigation.

What about Justice? Justice for my husband who suffered horribly for five weeks after the cardiothoracic surgeon sent him out of theatre with his Pleural Lining being suctioned at ten times the safe amount (31kpa instead of 3kpa) and left it like this for 22 hours till a nurse discovered this. Then compounded their negligence by not telling us what had happened till I found out 7 months later. What about justice for those of us who love him and who will never heal from what we saw being done to him, no more than any relatives of people killed by crime or accident?

I was reminded the sheer arrogance and insensitivity of the health Minister Skinner and Ms Williams, now on the health Care Complaints Committee by reading a statement made by Surgeon Dr Rodney Woods in the Jayant Patel case in Brisbane where he states in regard to Patel’s patient Mervyn Morris, “If he hadn’t had the surgery then I don’t believe he would have developed the various complications and the subsequent death.” Patel spent time in goal.

Please help me to understand the difference in what Professor DuFlou wrote in his report to the NSW Coroner in regard to the death of Don Mackay, “it is most unlikely that the deceased’s rapid, but lengthy, deterioration would have commenced when it did but for the patient undergoing the various transfers and treatment.”

Or of what Dr Phillip Hoyle Director of Clinical Governance RNSH wrote in his letter 2/1/08

“The very rapid progression from admission to operation meant that there was no assessment by the Spinal Unit or with the respiratory Unit preoperatively. I recognise that given the complexity of Mr Mackay’s condition, a more comprehensive assessment, with input from the spinal and respiratory teams prior to surgery, would have been wise.”

I challenge Health Minister Jillian Skinner and Ms Leslie Williams to justify their weak hypocritical stand. Justice should be for everyone, the same – not a convenience to be dispensed with because they consider there is nothing to be gained.

(Most of Blog friends will have already read the below - its here as part of my media release...so no need to read)

Please find attachment with a brief outline of what was done to Don Mackay was written 2008   

Royal North Shore Hospital Shame.

Donald William Mackay’s cruel death cries out for justice.

On behalf of Don my husband of thirty-five years, our daughters, and myself, I request authorities begin an independent, open investigation into the surgery, treatment, care and subsequent death of Donald William Mackay. His death was a direct result of five weeks he spent in RNSH between 11^th April 2007 and 17^th May 2007 (the day he died).  I request that the Cardiothoracic surgeon and team, the Spinal Ward doctors and nurses who ignored my husband’s worsening condition receive disciplinary action because of their  negligence, which led to Don’s first Respiratory Arrest and inability to come off ventilation. ICU and Cardio Thoracic Specialists who withheld full disclosure of his condition from us should receive disciplinary action.  Their non-disclosure led to Don being subjected to unnecessary torture, which lasted five long weeks.  I request that the filthy practices and deplorable conditions he endured without choice in ICU be exposed. Legally, ethically, why and how are the medical practitioners protected from criminal charges?

This could happen to your loved one or yourself. I have no reason to think it has not since my husband’s criminal mistreatment inside RNSH.

1.     My husband, Don Mackay had been a Quadriplegic for 25 years. On 11/4/07, he arrived at RNSH at 10pm from Port Macquarie. It was not an emergency. A doctor whose English was limited signed him up for the surgery within the hour that night. He cannot recall what he told my husband about that surgery. Why?

2.     The next morning as I was driving from Port Macquarie, Don was being given dangerous and unnecessary surgery (Pleurodesis)

3.     How could RNSH’s Cardio Thoracic surgeon just “assume” Don had been examined, by a cardiothoracic specialist in Port Macquarie? This was unprofessional.

4.     There was no ECG prior to surgery although he had Pericardial Effusion. Why was that?

5.     He had neither blood tests nor any pathology. How can they justify this?

6.     The Admitting Cardio Thoracic Specialist who was also the surgeon saw no X-rays or Scans prior to surgery. (They were still in Port Macquarie Base Hospital.) What was going on?

7.     The review by the Anaesthetist is admitted by RNSH to be “limited”. He was not seen before theatre. Limited why? Don had complicated medical problems and required proper assessment.

8.     The Cardio Thoracic surgeon had not seen Don before Theatre and had not done a detailed examination.  The person who signed him up the night before was not part of the surgical team. No one knew anything about his multiple conditions before surgery. How irresponsible and dangerous was that?

9.     Ungraded Talc known to be connected to Acute Respiratory Distress Syndrome (which Don developed) was used. Since his death, they no longer use this. They were aware it was linked to Acute Respiratory Distress Syndrome (ARDS). Why was it used? Was it cheaper?

10.  My husband’s right lung was meant to be suctioned until all the fluid was removed at the gentle suction of 3KPA. RNSH admit that a transcription error caused his lung to be suctioned (vacuumed) at 10 times that value at 31KPA. This was left like that for almost 24 hours and was not spotted by Cardiothoracic Doctors, and the Spinal Unit’s nurses till 8am the next day. All RNSH staff involved are culpable.

11. Cardiothoracic were ignorant of “Quadriplegic breathing” which makes it harder to breathe while sitting up when there are problems. They ordered him sat up in his wheelchair. He rapidly deteriorated. I begged the Spinal Nurse to return him to bed she refused. He suffered three hours of extreme torture trying to breathe against gravity. He had a Respiratory arrest that night. Why were they all so ignorant of his condition?                   

12. Cardiothoracic should have known not to sit up someone with suctioning of the lungs in progress as this can cause the Pleurodesis surgery to fail and can lead to Acute Respiratory Distress Syndrome. This happened. Why did they allow this?

13. It is the responsibility of the surgeon to see that all procedures pre and post surgery are followed. Almost none of the regular procedures were followed. There is no excuse for this?

14. Spinal nurses, Doctors, and Cardiothoracic were grossly negligent over the next days. He was treated badly as his condition became dangerous. He began to hallucinate and gasp for breath. This was extreme cruelty and shocking for him to experience.

15. On the night of the first of his respiratory arrests, he called my name for three hours according to his roommate and THEY DID NOTHING. I was five minutes away and had given them instructions to call me at any time if he needed me or things got worse.

The next five weeks in RNSH’s Intensive Care Unit were horror-filled. I cannot these get these dreadful images out of my head. I try to see him as he was before their negligence allowed him to be filled with infection, sepsis, fluid and God knows what. I cannot. I see my beloved husband tied and gagged by tubes. Both lungs drowning and full of fluid. MRSA and Klebsiellia Pneumoniae filled them with bloody mucus. I still see him with his tongue being forced painfully in and out, as he reached yet another respiratory arrest. One time he was breathing 50 breaths per minute. He was so frightened and I could not help him. An ICU nurse stood and did nothing. “I think he’s trying to talk”, she said blithely. AN ICU NURSE! It went on like this for five weeks. I feel like I have been in a war zone.

What I have relayed here is just the tip of the iceberg as to the dreadful suffering inflicted upon Don. Finally, he was allowed his wish, which was simply to get out of the filth and chaos, go home and die. Even then, after all they had done to him, it depended on conforming to their demand that the home respirator be taken away as soon as he got home. Apparently, there was not one other home respirator in RNSH or at Port Macquarie or anywhere else in the Northern Areas’ Health Service. Why was this?

It was a death caused by gross negligence, ignorance, stupidity, arrogance, filth and cost cutting. I should not have to be chasing justice on behalf of my husband, daughters and myself. Those responsible should be prosecuted and or receiving disciplinary action for killing my husband Don Mackay and robbing our daughters of their wonderful Dad. Those most responsible should not be still practising inside Royal North Shore Hospital. It would be better for NSW residents if they were not in the health system at all.

Royal North Shore Hospital buries its mistakes.

The Mackay Family. PO Box 248 Port Macquarie 

floods

 Andrew, here are some photos of my old place...the top one is of the animals on the top of the mound near the house. number three is the water lapping the steps - this never happened to me. And no 6 is the actual road leading from the highway to the house...it really will be called Pothole Macquarie after this.

Melissa's surprise

Then after Alison and Andrew's surprise...Melissa and Chris had one for me. I traveled up to their place near Windsor NSW and Melissa had planned a surprise trip back to Aberdeen and Scone NSW to see mum and Dad's graves and the graves of the family...important to me.
We had the very best of times - we laughed and were silly at the drop of a hat...got up to mischief - so good to do with your adult kids. I showed her the other cemetery where our Irish ancestors are buried and myself found it hard to find them - but now she knows where they are... For me it is important...they made the amazing life we have these days possible - their courage and toughness meant we can sit here in fan or air con coolness in summer...and blog..phone...whatever - this was all unknown to them but they endued and as each generation passed in Australia it improved... we didn't do this they did - so am honouring them and recognising their deprivation...and the hardness of their lives...

Melissa as well took me to Mme Tussards in Sydney - as you can see us hobnobbing with the hoipoloi...
I am amazed that I am so lucky that the girls actually seem to love being with me...I am their mum but as well I am a friend...too many don't have this and its sad really because when we have our babies we set out to be the best we can...

I haven't posted here much of late as I have felt I am going through something and find it hard to write anything much at all... but after these last few weeks it feels like the old thing... the need to write is returning.

Melissa playing ladies at Singleton

Me and Julia - can't help myself

Melissa and Shane Warne  - always ready for a trifling kiss

Melissa and Marilyn -

Melissa

Melissa gets lose to Nicole Kidman

Graham Kennedy and I share a laugh

Mum's Grave

At Scone Catholic Cemetary...my grandmother and her parents

Melissa and I

Chris and Melissa

Melissa and I

Big 59

I was a very lucky little Vegemite for my big 59th...hm one year till 60! Both my daughters went out of their way to make it really special... I spent a really good day at Alison and Andrew's place - had cake and dinner which was really good - she is a good cook - something I did not pass down with my genes...
Then we watched "Housos" (I love Housos!!!) Its so bad. I was happy with that but unknown to me till we got there the next day they had bought tickets to Cirque De Soleil...it was amazing - never knew human bodies could move like that - certainly mine cant any how...then after that dinner at Oscars (Oscar Wilde) at Docklands (I think) How lucky am I....I had another surprise coming but that's for the next post.

Ali made a cake for me and I couldn't even blow that many candles out.

But she did space them out a bit

Ali and I

Andrew and alison

Ali and I

Dropkick Murphys - "Rose Tattoo" (Video)

I have to admit I love the Dropkick Murphys - This is brilliant t as good as their "The Season's Upon Us" which is good fun

Pyrrole Disorder

Finally an article on this condition. A condition which appears more predominant in those with Celtic ancestory. The more severely you have this copndition the more likely you are to have emotional upsets and at worst levels it is implicated in mental illnesses. They have given part of the treatment here sadly not the lot. Once diagnosed (most GP's are sadly ignorant on this condition so you will have to ask) Practitioner quality Zinc and B6 are very helpful in balancing this disorder and great improvement comes with this. If you are not in a town where a doctor practicing Integrative medicine practices at least ask a Naturopath about supplying high level Zinc and Vit B6 - if interested google 

http://www.bodyandsoul.com.au/parenting+pregnancy/kids+health/10+have+this+illness+but+most+dont+know+it,21808

Sunday Telegraph “Body and Soul” insert 27^th Jan 2013

10% have this illness but most don’t know it

By Beverley Hadgraft

Zannie Abbott's daughter has pyrrole disorder, a condition with many physical and psychological symptoms, yet some doctors don’t know it exists

As a toddler, my daughter Sophie hit all the usual milestones. She walked, talked and ate when she was meant to. She learned to swim and, at preschool, to write her name.

She had a few quirks. She liked routine, if she had a late night she’d go off the scale, and she didn’t like loud noises. But lots of kids are like that so we didn’t worry and it wasn’t until she started school two years ago that I started thinking things were not as they should be.

Sophie struggled to read. It was almost as if there was something blocking her brain. She was totally unable to deal with stress and could cry for an hour and a half about not wanting to go to school and not wanting me to go to work. By the time I actually got her to her classroom, I was often a wreck and wept all over her teacher myself on a couple of occasions!

Life was a struggle
By the weekend, she would be totally exhausted. We ended up cancelling numerous social events because she simply couldn’t cope. She would have to spend at least three hours each day doing absolutely nothing in order to function. In short, life was a struggle. The only thing that seemed to make her feel better was sport. She coped with netball and athletics and even a mini triathlon really capably and it obviously made her feel good. 

We saw various experts trying to find out what was wrong and received various diagnoses, before taking Sophie to a physiotherapist who did cranial and visceral manipulation. She told me there was a problem with Sophie’s gut and recommended we see a GP who specialised in that area. She diagnosed pyrrole disorder.

Unusually, I had heard of pyrrole, as a friend’s son had it. It’s a genetic blood disorder that results in a dramatic deficiency of zinc, vitamin B6 and arachidonic acid – a long-chain omega-6 fat.

Common symptoms include inability to cope with stress, emotional mood swings and sensitivity to light and sound. It also causes learning difficulties and auditory processing disorder, which means that in a noisy environment, it’s hard to single out the sound you should be listening to. In a classroom environment, that would mean that if other kids were talking, Sophie would struggle to hear the teacher.

It all made perfect sense and, sure enough, the urine test came back positive. The doctor told Sophie: “You poor thing, you really have been having a hard time of it, haven’t you?”, which was probably the best thing she could have said. It was really nice for Sophieto have someone acknowledge her condition like that.

A common disorder
Sophie, now seven, was prescribed supplements in a dosage accordant with her weight and it made an immediate difference. We saw changes overnight and, although I know our journey is ongoing, it’s been getting better ever since. She was instantly happier, slept better and concentrated better. Before she couldn’t retain information or do spelling but now it was as if that blockage had been unblocked. 

Because it’s genetic, my husband Richard and I have also been tested. Richard also found he had pyrrole and was prescribed zinc, which made him feel much better and less forgetful. The changes in him aren’t so dramatic but I think that’s because he’s an adult so he’s developed coping mechanisms, including sport. One symptom of pyrrole is an inability to efficiently create serotonin and exercise can help compensate for that.

Apparently about 10 per cent of the population has pyrrole – it’s even higher among those with mental disorders such as attention deficit hyperactivity disorder (ADHD), schizophrenia and depression. That means that in a typical class of 25 to 30 kids, two or three have it and won’t be learning or behaving well.

It makes me wonder why every kid isn’t screened along with all the other tests. Treating Sophie was so easy and it didn’t just make her happier, it made our whole family happier.

Physical signs of pyrrole disorder

·        White spots on fingernails

·        Larger mid-section

·        Sweet, fruity breath and body odour

·        Pale skin that burns easily

·        Overcrowded teeth and poor tooth enamel

·        Creaking knees

·        Cold hands and feet, even in summer

Common symptoms

·        Anxiety

·        Low stress tolerance

·        Mood swings

·        Depression

·        Motion sickness

·        Auditory processing disorder

·        Memory loss

·        Temper outbursts

·        Insomnia

·        Joint pain

·        Poor dream recall

·        Fatigue

·        Irritable bowel syndrome

·        Delayed onset of puberty

·        Hyperactivity

·        Craving for high-sugar and high-carb foods

From a GP
“Pyrrole disorder is quite common – almost a third of patients I see have it – but not many doctors know about it. It is a marker of oxidative stress, which occurs within the body as a result of physical and emotional distress. Our current lifestyle enhances oxidative stress – processed food, lack of exercise, toxins in our environment and emotional stressors. There is also a theory that chronic low-grade infections can contribute.”
Dr Nicole Avard, GP, who specialises in integrative and nutritional medicine

Did you know? The symptoms of pyrrole – also known as pyroluria, kryptopyrrole or mauve factor – can be exacerbated by stress and a poor diet.

The Unroyal family

Thats it...I was never fond of the Royal Family coming from Irish background but this atrocity did not just occur in the 40's and 60's this was allowed to happen right up until the disgusting institution was closed in recent times. One of the Queen's first cousins is still alive  and still hidden and kept poorly. The other died in extreme poverty not even owning her own clothes. I don't care how often they wave or smile or get married - the Queen has had since she was made Queen to put this to rights and the nasty thing has not. The Royal Family have a disgusting attitude to disability and it shows. One day maybe when the old woman is collecting bunches of flowers someone might just spit in her eye for a change.

This just makes me so bloody angry - they she and Margaret should grow up with richness but two first cousins not just institutionalised but institutionalised without financial help so that they had nothing - not even their own clothes.

http://www.dailymail.co.uk/femail/article-2059831/The-Queens-hidden-cousins-They-banished-asylum-1941-left-neglected-intriguing-documentary-reveals-all.html 

The Queen's hidden cousins: They were banished to an asylum in 1941 and left neglected now an intriguing  documentary reveals all

By MARY GREENE
UPDATED: 22:58 GMT, 11 November 2011

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The date was 29 July, 1981, Prince Charles and Lady Di’s wedding day, and as the Queen arrived at St Paul’s Cathedral and waved to the crowds, two women in late middle-age, in shapeless, baggy dresses, shuffled with clumsy gait up to the television and waved and saluted back to her, unable to articulate speech but making excited noises.

It was a poignant moment, recalls Onelle Braithwaite, one of the nurses who cared for them. ‘I remember pondering with my colleague how, if things had been different, they would surely have been guests at the wedding.’ 

The two women were Nerissa and Katherine Bowes-Lyon – nieces of the Queen Mother and first cousins to the Queen – who had been incarcerated since 1941 in the Royal Earlswood Asylum for Mental Defectives, at Redhill in Surrey.

The Queen Mother with Princess Elizabeth and Princess Margaret in 1937

Their last reported visitors were in the 1960s, and although it was an open secret at the Royal Earlswood, and in the local community, that the asylum housed close relatives of the Royal Family, to the wider world their existence had been obliterated.

 

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Burke’s Peerage had declared them both to be long dead, on misinformation supplied by the family. In fact, Nerissa did not die until 1986, aged 66, and Katherine is still alive; at 85, she is the same age as the Queen. 

Their shocking story came to light shortly after Nerissa’s death, when journalists discovered she was buried in a grave marked only by a plastic name-tag and a serial number.

Nerissa (pictured) was born in 1919, and Katherine in 1926 - their father was John Bowes-Lyon, one of the Queen Mother's older brothers

The ensuing scandal, which prompted an anonymous source to provide a gravestone for Nerissa, made little difference to her sister’s life. Katherine received no visitors at the asylum, and as her aunt, the Queen Mother, lived on into cosseted old age, she did not possess even her own underwear – at least untilher final years there – and had to dress from a communal wardrobe.

Now a Channel 4 documentary tells the story of the Queen’s hidden cousins, born in an era when children with learning disabilities were a family’s shameful secret.

They were no problem to look after but they were mischievous, like naughty children. Katherine was a scallywag. 

Photographs of Katherine Bowes-Lyon show a distinct resemblance to the Queen, and Onelle Braithwaite says the sisters’ story was common knowledge when she arrived at the asylum as a 20-year-old nurse in the mid-1970s.

‘If the Queen or Queen Mum were ever on television, they’d curtsey – very regal, very low. Obviously there was some sort of memory. It was so sad. Just think of the life they might have had. They were two lovely sisters. They didn’t have any speech but they’d point and make noises, and when you knew them, you could understand what they were trying to say. Today they’d probably be given speech therapy and they’d communicate much better. They understood more than you’d think.’

Former ward sister Dot Penfold, now retired from nursing, also has fond memories. ‘They were no problem to look after but they were mischievous, like naughty children. Katherine was a scallywag. You could scream at her and she’d turn a deaf ear.’

Katherine, 85, is still alive and is believed to be living in a care home in Surrey

Nerissa was born in 1919, and Katherine in 1926. Their father was John Bowes-Lyon, one of the Queen Mother’s older brothers and a son of the Earl of Strathmore. John died in 1930 and was survived, until
1966, by the girls’ mother, Fenella. 

The sisters were unfortunate to have been born in an era when mental disability was seen as a threat to society and linked to promiscuity, feckless breeding and petty crime, the characteristics of the underclass; associations encouraged by popular belief in the science of eugenics, soon to be embraced by the Nazis. 

‘So the belief was if you had a child with a learning disability, there was something in your family that was suspect and wrong,’ explains Jan Walmsley, the Open University’s professor in the history of learning disabilities. 

For the Bowes-Lyons, this was a stigma that could threaten their social standing and taint the marital prospects of their other children. (Nerissa and Katherine’s beautiful and healthy sister Anne became a princess of Denmark by her second marriage; by her first marriage, she was Viscountess Anson and mother of the society photographer, the late Lord Lichfield.)

The imposing Royal Earlswood was the country’s first purpose-built asylum for people with learning disabilities. Nerissa and Katherine were 15 and 22 respectively when they were admitted. Nerissa’s medical records categorise her as ‘imbecile’. ‘She makes unintelligible noises all the time,’ stated a doctor. ‘Very affectionate… can say a few babyish words.’

Judy Wilkinson, 67, from Godalming, Surrey, recalls her apprehension when visiting the Royal Earlswood as a young girl in the 1950s, when her elder sister Nicola, who was brain-damaged at birth, was consigned there. ‘I’d get that gripping feeling of dread,’ Judy explains, and she remembers feeling puzzled that her sister was always wearing the same green coat, which never seemed to wear out. 

Now she realises that the inmates wore their own clothes only if they had visitors. But for Nerissa and Katherine, there were few if any visitors. ‘I never saw anybody come,’ says Dot Penfold. ‘The impression I had was that they’d been forgotten.’

From the late 1960s, a wave of scandals exposed conditions in institutions that were severely understaffed and overcrowded. The Royal Earlswood was closed in 1997; at least one former nurse has alleged patients were abused. The grandiose building has since been converted into luxury apartments, while Katherine is believed to be living in a care home in Surrey. Her relationship with her family remains unchanged. 

The Queen’s Hidden Cousins, Channel 4, Thursday, 9pm.

Read more: http://www.dailymail.co.uk/femail/article-2059831/The-Queens-hidden-cousins-They-banished-asylum-1941-left-neglected-intriguing-documentary-reveals-all.html#ixzz2Ilz0OyWK
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Aussies vs New Zealand

Worth it for another public holiday!!!

I have just read this article written by "Bad Cripple" on my blog roll. Don and I were well aware of this issue to do with what others assume they know and have the right to judge (they don't) about their perception of the quality of life in disabled people. It is a dangerous trend in modern medicine and a very slippery slop we are on. Bill also has some excellent thought provoking posts  which may not be for everybody but tally up with our experiences of many professional (medical and judicial) people's attitudes - people you would imagine would be a little more enlightened. 

Comfort Care as Denial of Personhood

BY WILLIAM J. PEACE

William J. Peace, “Comfort Care as Denial of Personhood,” Hastings Center Report (2012):1-3. DOI: 10.1002/hast.38

It is 2 a.m. I am very sick. I am not sure how long I have been hospitalized. The last two or three days have been a blur, a parade of procedures and people. I do know it is late at night. The hall lights are off, and the nursing staff ebbs and flows at a glacial pace. I have a very high fever, and my body has been vibrating all day. I am sore. To add to my misery, I have been vomiting for several hours. My primary focus is limited to my stomach. I want to stop vomiting. A variety of medications have been prescribed, but none have relieved my symptoms. While I am truly miserable, I know I am medically stable. I am not in the intensive care unit, and this is good. My main worry is MRSA—methicillin-resistant staphylococcus aureus. MRSA represents a very serious risk for a person who has a large open wound and faces an extend­ed hospitalization. Anyone entering my room needs to put on a full hospital gown, for that person’s protection and mine.

I have one thing going for me. As a child, I went through the medical mill. I spent years on neurological wards with morbidly sick kids. I learned how to get good medical care and am socially adept, skilled even, in an institutional setting. I may be sick, but I am not rattled.

The last few days have been rough, though. I had a bloody debridement for a severe, large, and grossly infected stage four wound—the first wound I have had since I was para­lyzed in 1978. I know the next six months or longer are going to be exceedingly difficult. I will be bedbound for months, dependent upon others for the first time in my adult life. As these thoughts are coursing through my mind, a physician I have never met and the registered nurse on duty appear at my door. As they put on their gowns I am weary but hope­ful. Surely there is something that can be done to stop the vomiting. The physician examines me with the nurse’s help. Like many other hospitalists that have examined me, he is coldly efficient. At some point, he asks the nurse to get a new medication.

What transpired after the nurse exited the room has haunted me. Paralyzed me with fear. The hospitalist asked me if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.

This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people. The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.

His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the cur­rent therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unem­ployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.

This exchange took place in 2010. I never told my family or friends about what transpired. I never told the surgeon who supervised my care. I never told the wound care nurses who visited my home when I was bedbound for months on end. I have been silent for many reasons, foremost among them fear. My wound and subsequent recovery shattered my confidence. Thanks to the support of my family, I narrowly avoided the outcome that the physician described, but he was correct in much of what he told me. I was bedbound for nearly a year. Insurance covered few of my expenses. I took a financial bath.

But the underlying emotion I felt during my long and ar­duous recovery was fear. My fear was based on the knowledge that my existence as a person with a disability was not val­ued. Many people—the physician I met that fateful night in­cluded—assume disability is a fate worse than death. Paralysis does not merely prevent someone from walking but robs a person of his or her dignity. In a visceral and potentially lethal way, that night made me realize I was not a human being but rather a tragic figure. Out of the kindness of the physician’s heart, I was being given a chance to end my life.

The fear I felt that night and that gnaws at me to this day is not unusual—many paralyzed people I know are fearful, even though very few express it. Many people with a disabil­ity would characterize a hospital as a hostile social environ­ment. Hospitals and diagnostic equipment are often grossly inaccessible. Staff members can be rude, condescending, and unwilling to listen or adapt to any person who falls outside the norm. We people with a disability represent extra work for them. We are a burden. We also need expensive, high-tech equipment that the hospital probably does not own. In my case, a Clinitron bed, which provides air fluidized therapy, had to be rented while I was hospitalized. Complicating mat­ters further is the widespread use of hospitalists—generally an internist who works exclusively in the hospital and directs in­patient care. The hospitalist model of care is undoubtedly ef­ficient and saves hospitals billions of dollars a year. However, there is a jarring disconnect between inpatient and outpa­tient care, which can represent a serious risk to people with a disability. My experience certainly demonstrates this, as no physician who knew me would have suggested withholding lifesaving treatment.

The lack of physical access and negative attitudes is a dead­ly mix that few acknowledge, much less discuss. To be sure, exceptions exist. Last year, James D. McGaughey, executive director of Connecticut’s Office of Protection and Advocacy for Persons with Disabilities wrote in an affidavit in the as­sisted suicide case Blick v. Division of Criminal Justice:

During my service at the Office of Protection and Advocacy for Persons with Disabilities, the agency has represented in­dividuals with significant disabilities who faced the prospect of, or actually experienced discriminatory denial of benefi­cial, life-sustaining medical treatment. In most such cases physicians or others involved in treatment decisions did not understand or appreciate the prospects of people with dis­abilities to live good quality lives, and their decisions and recommendations sometimes reflected confusion concern­ing the distinction between terminal illness and disability. In a number of those cases, despite the fact that the indi­viduals with disabilities were not dying, decisions had been made to institute Do Not Resuscitate orders, to withhold or withdraw nutrition and hydration, to withhold or with­draw medication or to not pursue various beneficial medical procedures. In my experience, people with significant dis­abilities are at risk of having presumptions about the quality of their lives influence the way medical providers, including physicians, respond to them.

Disability memoirs often contain stories that recount blatant discrimination by physicians and other health care workers. Few, however, are willing to write about being of­fered a way to die. I suspect this is because the experience is deeply unsettling, if not horrifying. It is the ultimate insult. A highly educated person who should be free of bias and big­otry deems your very existence, your life, unworthy of living. Jackie Leach Scully has called this nonverbalized bias “disab­lism.” She writes, “People who are nonconsciously or uncon­sciously disablist do not recognize themselves as in any way discriminatory; their disablism is often unintentional, and persists through unexamined, lingering cultural stereotypes about disabled lives.” People with a disability cannot escape such stereotyping within the power structure of the American health care system. Examples of bias abound. For instance, in the searing memoir Too Late to Die Young, Harriet McBryde Johnson recounts how medical personnel would not listen to her after she was hospitalized for a fall out of her wheelchair. She explained that she was sensitive to pain medication, but her explanation was completely ignored. Medical personnel then oversedated her to the point that she was no longer lu­cid, and her personal care attendant was forced to intervene. Upon learning that she was a well-respected lawyer with her own practice, though, the same people suddenly treated her like a professional peer. The contrast in care was stark. The bias McBryde Johnson wrote about is commonplace. It is one reason why I never meet a physician without having a proper introduction. The introduction is not about my health care, but rather to establish my credibility as a human being.

Other people with a disability have been offered the same permanent solution to their perceived suffering that I was. The first chapter of Kenny Fries’s thought-provoking book, The History of My Shoes and the Evolution of Darwin’s Theory, is about a medical review required by Social Security. In this routine visit, a physician Fries never met is taken aback by his condition. The physician mutters to himself, amazed and disconcerted. When he is leaving, he “pauses at the door, then he turns back to me and says: ‘I shouldn’t say this to you, but if you ever need medication, you let me know.’” Could the physician simply have been offering to prescribe medication for pain relief? When Fries arrived home later in the day, the meaning of the physician’s words struck home. “I knew what he was offering, the help he couldn’t ever voice out loud. The medication was not for pain but in case I decide that the pain is too much and I do not want to survive. Survival of the fittest . . . His reaction was based on his misunderstanding of what it means to survive in an often inhospitable world.”

Misunderstanding! This misunderstanding infuriates me and is a threat to my life. Why is it we rally around people with a disability who want to die? Society embraces their dig­nity and autonomy. They are applauded. These people have character! These people are brave! This is an old story, a deep­ly ingrained stereotype that is not questioned. We admire people with a disability who want to die, and we shake our collective heads in confusion at those who want to live. This mentality plays itself out in popular culture. Hollywood pro­duces films such as Million Dollar Baby that receive accolades (in fact, Million Dollar Baby won 2004’s Academy Award for  best picture, among other awards). I was stunned not by the film but the audience reaction. When I saw it in the theater, the audience cheered when Maggie—quadriplegic, afflicted with bedsores, and having lost a limb to infection (the lat­ter being an exceedingly rare complication among paralyzed people)—was killed.

Real-life cases abound. Jack Kevorkian eluded being convicted even though he killed people who were disabled and not terminally ill. In 1990, a Georgia court ruled that thirty-four-year-old Larry MacAfee, a quadriplegic who was not terminally ill, had the right to disconnect himself from his respirator and die. The court declared that MacAfee’s de­sire to die outweighed the state’s interest in preservation of life and in preventing suicide, thereby upholding his right to assistance in dying. Just the year before, another man, David Rivlin, also sought court intervention in his wish to die. Unlike MacAfee, who changed his mind after receiving support from the disability community, Rivlin utilized court-sanctioned, physician-assisted suicide. In 2010, Dan Crews expressed a desire to die because he feared life in a nursing home, and he asked to be disconnected from his respirator. In 2011, Christine Symanski, a quadriplegic, starved herself to death. I could cite many other examples, but the com­mon theme remains the same—people with a disability who publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest.

Ironically, who is discriminated against? Those people with a disability who choose to live. We face a great challenge in that society refuses to provide the necessary social supports that would empower us to live rich, full, and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly “patient-centered”—buzzwords I often heard in the hospital. It made me wonder, how do physicians perceive “patient-centered” care? Is it possible that patient-centered health care would al­low, justify, and encourage paralyzed people to die? Is patient-centered care a euphemism that makes people in the health care system feel better? When hospitalized, not once did I feel well cared for. All I felt was fear, for when it comes to disabil­ity, fear is a major variable. I fear the total institutions Erving Goffman wrote about—places where a group of people are cut off from the wider community for extended periods of time, and every aspect of their lives is controlled by adminis­trators (nursing homes, prisons, hospitals, rehabilitation cen­ters). I do not fear further disability, pain, or even death itself. I fear strangers—the highly educated men and women who populate institutions nationwide.

What I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bod­ies. Efficient protocols exist within institutions, and the pres­ence of a disabled body creates havoc. Before I utter one word or am examined by a physician, it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it.

In the estimation of many within the field of disability studies, the idea of normal or the mainstream is itself destruc­tive. The poet Stephen Kuusisto has written that “the main­stream is one of the great, tragic ideas of our time. There is no mainstream. No one is physically solid, reliable, capable as a solo act, protected against catastrophe; there is only the stream in which each one of us must work to find solace in meaning.” This leads me to ask, Who decides what is normal or mainstream? Certainly not people with a disability. When I see a disabled body, I see potential, adaptation, and the very best that humanity has to offer. As one who has not been seen as normal for over thirty years, I know that the power to define what is normal rests with “the normate,” to use Rose Marie Garland-Thomsen’s awkward phrase. The normates define and control what it means to be different. They dictate not only what is healthy but also how ill health is treated.

This is where disability studies has much to offer. In fact, the mere presence of people with disabilities is valuable. Our bodies have been medicalized. Why is the disabled body so objectionable? What are the practical and theoretical implica­tions of the rejection of the disabled body? If those working within the health care industry were smart, they would listen to what people with disabilities have to say.

Hastings Centre Report 2012 copyright