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Are Disabled People Regarded as
The Same to Those Who Are Mentally Incapable or Those Who Have
a Terminal Illness?
© Gill Gerhardi 2004
If the answer to that question is yes that might explain why as a physically disabled person I feel threatened by both the Medically Assisted Dying for the Terminally Ill Bill (HL) and the Mentally Capacity Bill being considered in Parliament. They may not target people like us directly but they threaten us because the difference between a terminal illness/limited mental capacity and someone with a severe physical disability is somewhat blurred both for the medical profession and the able bodied general public alike. Doctors make life and death decisions for their patients everyday but because many don’t come across severely disabled people they often regard all of these three categories of people in the same way. Generally we are seen as suffering specimens of humanity who are worthy of pity.
Since I have been campaigning against euthanasia I have talked to many non-disabled people about how they think they would feel if a disability struck them. Every single one initially said that if they were going to be as disabled as me they would rather die. Which shocked me to the core. Many did reconsider when I elaborated that even though I have two physical disabilities they haven’t stopped me doing things and going places. But their initial reaction illustrated how bad living with a disability is seen to be by the able majority and how death could be seen as being in most newly disabled people’s best interest. I am as sure the mental incapacity is seen in very much the same light.
I would call Motor Neurone Disease a voraciously progressive disability that takes away the patient’s ability to walk, talk etc. yet it is often referred to as a terminal illness. Yes it can cause death but it doesn’t always, as Steven Hawkins demonstrates very clearly. Calling it a terminal illness just strikes terror into those who get it and takes energy and time away from finding ways round it and getting on with the life.
The two bills being put through Parliament, if either becomes law, will badly affect disabled people. The Swiss assisted suicide law, was only meant to be used for the terminally ill who were in the very last two weeks of life, yet it is now being used to hasten death for anyone, whatever their physical condition. British physically disabled and mentally ill people have gone there to die purely because their needs were not fully met for them to continue to have full and fulfilled lives.
Mental incapacity means having difficulty making decisions but the Mental Capacity Bill also includes those unable to communicate. Sometimes my speech is difficult to understand. I know that if someone decides they are not going to understand me before I open my mouth, they won’t understand me however hard I try. If that happened to a doctor after the Mental Capacity Bill became law they would find it fairly easy to decide that I was mentally incapacitated. If mental incapacity was diagnosed and my friends and family were not around to help change the diagnosis, a designated person would be able to instruct doctors to:- hasten my death through starvation, dehydration and stoppage of medical care and/or use me in medical research. If, as my research showed, death is considered better than severe disability or illness then it will be very easy for death to be in a lot of people’s best interest
If you have a very visible disability it is still sometimes assumed that you are mentally debilitated too. Largely through ignorance and lack of exposure people will talk to the person with them rather than the disabled person themselves and will often assume the disabled person won’t know what they want or where they want to go. Doctors have often led very sheltered lives and without explicit letters of referral have been known to fall into the same assumptions. Of course those of us who are articulate and /or determined can override these situations most of the time but not always
This disable lady had a degree from Manchester
University before this yet;-
“When she became pregnant June Maelzer faced the toughest
challenges of her life. She was implacably opposed to doctors
who suggested termination and who insisted she was selfish and
irresponsible to have a baby. She was over the moon when her
son, Frank, was safely delivered in 1976 and determined to make
their lives as ordinary as possible.
After a routine post-natal check-up Maelzer
discovered that a case conference had been convened without her
knowledge and a decision taken that, whilst in the first instance
she would be allowed to keep her baby, "social services
would be on the sidelines waiting to take the baby into care."
She found her parenting constantly undermined. When her baby
began walking at the early age of 10 months, he was scrutinised
for bumps and bruises by zealous health professionals. At a clinic,
when she said he mainly ate fruit and vegetables, she was told
that if he did not begin to eat meat he would be taken into care.
When he gained weight normally, the gaze of professionals turned
to assumptions of "maternal deprivation" because Maelzer
couldn't cuddle him without physical assistance. She felt she
was expected to fail.” Michele Moore and Sarah Beazley 17
March 2004 independent.co.uk
http://www.guardian.co.uk/news/2004/feb/21/guardianobituaries
I had my first son a year later than June. My doctors were a little more supportive but I had similar problems with Social Services staff and other health professionals. Although that was over twenty five years ago and things have allegedly improved doctors are notoriously conservative and slow to change.
If the Medically Assisted Dying for the Terminally Ill Bill becomes law there is no way to safeguard those regarded by society as having a life not worth living.. In The Netherlands where medically assisted suicide is legal, it is estimated that every year approximately nine hundred people are allowed to die early without having given doctors their consent. Even though that is against Dutch law it continues to happen. It is recognised that there are ways to abuse even the most stringently monitored regulations because those targeted are the most vulnerable members of society.
There are two big problems that should be addressed before either the Medically Assisted Dying for the Terminally Ill Bill (HL) or the Mentally Capacity Bill gets anywhere near the statute books. Doctors chronic lack of disability awareness needs to be dealt with across all medical specialities and the lack of scrutiny given to Doctor’s work particularly around dying patients needs to be remedied. Doctors still have a responsibility to make the care of their patients their first concern but since the Tony Bland case and the financial constraints on the NHS have become so much more pressing, that role has shifted. There seems to be more thought put into creating good deaths – the literal meaning of euthanasia– than ever before. Doctors will argue that they are doing it to relieve suffering but sometimes it has more to do with relieving financial pressure on the health service than anything. If we have dropped the principle of the sanctity of life – i.e. that life must be preserved at all costs - we must not let society believe that death is better than anything short of ‘normal’ able bodied life