Like a lot of you I watched the recent Panorama programme which focused on the subject of assisted suicide. The central issue concerned whether Kay Gilderdale should have been prosecuted for assisting her daughter Lynn to commit suicide. The programme used every technique imaginable to ensure the viewer was sympathetic to Kay’s terrible plight. What it didn’t go into was what kind of support, if any, Kay and her family received in order help them and Lynn. We didn’t hear from others with a similar condition putting their point of view. Some of the filming as I understand it took place while Lynn was alive but there was no interview with her. As a programme it singularly failed to inform the debate.
RADAR, of which I am chair, has always taken the (unpopular) view that Kay Gilderdale should have been investigated. However, before writing to the editor or posting comments denouncing us for our inhumanity, please note we have never said she should have been convicted. Our position is that when one person is found to have had a hand in the death of another, that person should be forensically investigated and called to account, in accordance with the law which protects us all. The death, therefore, of a profoundly disabled person should be investigated with the same vigour as that of a non-disabled person. Anyone involved with that death should have to account for their actions in a court of law. This sounds reasonable to us, and yet the majority, apparently, do not agree.
Those campaigning for assisted suicide wish to change that most fundamental of laws. This will effectively create a class of people from whom that legal protection can be taken away, whether by Act of Parliament or by decision of a tribunal. The Gilderdale case has created as great deal of public attention, promoted by many as proof positive of the need for a change in the law. The Inglis case, however, has been somewhat neglected by those who call for such a change, and I think I can demonstrate the reason why.
Tom Inglis suffered severe brain damage in a fall from an ambulance. He became profoundly disabled, and could only interact by blinking or by squeezing hands. His mother Frances became convinced (“obsessed”, a relative suggested in court) that he was suffering intolerable pain, in spite of medical opinion to the contrary, and that Tom, who had been an active young man, would not want to be a “vegetable”. Foiled in one attempt to kill him, Frances, determined that he should die, disguised herself as an aunt, gained access to his room, barricaded the door and then injected him with heroin. What if Tom did not, at the moment his mother gained entry to his room, want to die? If that is the case, then he was the victim of a brutal, calculated premeditated murder. The fact that Francis Inglis was tried, convicted and sentenced for the crime at least provided justice for Tom.
Frances Inglis provides evidence of why the “loving-mother-knows-best” school of thought, which tends to assume that relatives will always have the best interests of a profoundly disabled person at heart, is dangerous and somewhat misguided.
Sir Terry Pratchett in his Dimbleby Lecture talked about allowing people the right to request death for themselves, at a time of their own choosing. For those like him who are able to communicate their desire and can articulate it and have the financial resources to manage their situations this may seem reasonable. They are far less likely to feel they are a burden or a nuisance and are in many ways spared the possibility of feeling pressured to die.
As for Kay Gilderdale, she has now been acquitted, but the point about people such as Lynn Gilderdale and many other profoundly disabled people is that they are so utterly dependent upon others. They are often placed in situations where other people have a great deal of power and influence over them, and an awful lot of unsupervised access to them. To exempt such individuals from legal scrutiny if they assist the person in their care to commit suicide would open the door to abuse and leave already vulnerable people at ever greater risk. Precisely because they have such power and responsibility, people who assist in a suicide should be subjected to full forensic scrutiny, and their assertions as to their motives and the course of events should not simply be taken at face value.
The issues surrounding these cases are extraordinarily complex – levels of support, palliative care, effective pain management, access to activities and peers, attitudes of relatives, benefit levels, presence or absence of mental health conditions – to allow a one size fits all law to be passed, and setting up tribunals which grant a license to kill at a point in the future open the door to various abuses – what if the person changes their mind, but the person assisting them doesn’t? Simply assuming that in the case of terminally ill and disabled people friends and relatives will always act in their best interests is naive and dangerous.
Finally in a recent interview for a book on Holland’s euthanasia law, Els Borst, the minister who campaigned vociferously for the law, admitted that Holland should have sorted out palliative care first, and that levels of palliative care have subsequently declined. The United Nations Committee on Human Rights has expressed worries over Holland’s euthanasia laws, and there are grave concerns about unreported cases, as there are in Oregon.
Rather than change legislation which is designed to protect vulnerable people shouldn’t we ensure that the individual and their family are given all the support that it is possible to provide? Perhaps then their quality of life would be enhanced making assisted suicide a less attractive option.
Manufactured goods ‘must be included in new EU laws’
Campaigners have called on the government to back demands for manufactured goods to be covered by new European Union (EU) anti-discrimination laws.
The draft equal treatment directive would extend protection from discrimination on the grounds of disability, age, sexual orientation and religion or belief to the provision of goods and services across the EU.
Currently, the UK’s Disability Discrimination Act does not force manufacturers or designers of goods to make reasonable adjustments for different access needs, and neither will the new equality bill.
But campaigners are lobbying the government to push for such a measure to be included in the EU directive.
Baroness [Jane] Campbell and Labour MP Roger Berry – co-chairs of the all-party parliamentary disability group – have written to the government, asking it to back calls for manufactured goods to be included.
But at a meeting of the group this week, Caroline Ellis, joint deputy chief executive of RADAR, said: “We have had a rather unsatisfactory response from Jonathan Shaw (minister for disabled people) saying the government view is regulation is not the way forward. We beg to differ.”
The Equality and Human Rights Commission and Leonard Cheshire Disability are among other organisations to back the inclusion of manufactured goods, according to a new government report that summarises responses to a consultation on the directive.
The report says evidence submitted to the consultation pointed to current access problems such as the lack of DVDs with subtitles, instruction leaflets that were difficult to understand, and inaccessible LCD screens on an increasing number of white goods such as washing machines and microwaves.
In its submission, Disability Law Service said new laws to ensure goods were as accessible as possible have a “significant impact” on enabling disabled people to “truly participate in society”.
But the government said many respondents had “grave concerns” about the proposal.
It said the CBI, the business lobby organisation, “was just one organisation to argue that not only would the cost be too huge a burden to bear for manufacturers, but that it would also do disproportionate damage to UK competitiveness”.
The government has not published its conclusions about the consultation responses because of the risk of “compromising” EU negotiations.
Additional News provided by John Pring at www.disabilitynewsservice.com