Last week in the House of Commons we saw two measures passed: the first licensing women to abort at up to full term, the second enabling the state to participate in, and even encourage, suicide for the terminally ill.
There is a terrible symmetry here, and a bleak message – that life at its beginning, and at its end, is worthless.
As the mother of an adult with a learning disability I am petrified by the lack of protection for vulnerable people in the assisted suicide Bill.
You spend much of your life as a parent of a disabled child fighting for the necessary support, for the right school, the therapists, a specialist college. Every time you think you can take a breath and relax, the next milestone and hurdle awaits. You worry endlessly.
The biggest concern for every parent is what will happen when we are dead. Who will look after our ‘child’, who will understand their needs, care for them in the right way and facilitate their way through life?
But now, to add to that worry, is another enormous and unspeakable question – how can we stop them being killed?
I cannot believe that I am having to write these words. Yet the assisted suicide Bill makes no special provision whatsoever for this disenfranchised group.
How have we got to this place, where some lives are valued more than others?
Tory peer Baroness Monckton with her daughter Domenica, 30
Many people with a learning disability are vulnerable. My own 30-year-old daughter, Domenica, who has Down’s syndrome – and loves life – is highly suggestible and would intuit what her interlocutor wanted to hear, without understanding what she would be agreeing to. Yet in law she has what is called ‘capacity’.
The Bill is flawed on so many levels: the fact that no one on the death panel has to have any knowledge of the individual, the fact that hospices and care homes that do not want to be involved in assisted suicide will have no protection in law and the fact that their government funding could be based on participation.
Where does that sit with the ethos of Dame Cicely Saunders, who founded the hospice movement? A movement based on the principle of care: ‘You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.’ She also said: ‘Suffering is only intolerable when nobody cares.’
People who work in hospices do care, and the hospices that I have visited and am involved with are wonderful, positive and life-affirming places.
Those who work in these hospices who do not approve of assisted suicide – which is almost all of them – will probably leave the palliative care profession.
And where does that leave us? With people who want to end the lives of others, not care to the end.
All legislators – of which I am one, in the House of Lords – should be considering the weakest and most vulnerable when making momentous, and in this case, literal, life and death decisions.
The Bill as it stands has no special protection for people like my daughter.
This is something that rightly troubles the Health Secretary, Wes Streeting, too.
Explaining his decision to vote against the Bill in a Facebook post aimed at his constituents, he said: ‘I can’t get past the concerns expressed by the Royal College of Psychiatrists, the Royal College of Physicians, the Association for Palliative Medicine and a wide range of charities representing under-privileged groups in our society about the risks that come with this Bill.’
Among the many amendments rejected by the committee set up by the sponsor of the bill, Kim Leadbeater MP, were safeguards to protect people with Down’s syndrome – an amendment which should have included all people with a learning disability or autism. The committee, of which the great majority were backers of the Bill, rejected by 13 to eight to exclude special support for those with Down’s syndrome when discussing assisted suicide.
How could this possibly be considered acceptable? Was there not one of those 13 with experience of what it is to have a learning disability; no understanding of how much specialised knowledge and interpretation is needed?
If anyone mentions death or dying to my daughter, she immediately becomes acutely anxious and troubled. The deaths we have had in our family have traumatised her.
The thought of a stranger telling her that to kill herself would be an option if she has a terminal illness is so frightening and chilling that it makes me cry, and the fact this could all happen without any of her family being informed – as the Bill enables – is breathtakingly cruel and ignorant.
But above all else it makes me angry. Angry at the lack of rigour in this bill. Angry at the lack of understanding of people with learning disabilities. Angry at the implicit assumption that their lives are not worth the same as the rest of the population.
We saw it during the Covid pandemic, when the National Institute for Health and Care Excellence (NICE), which provides guidance to the NHS and the social care sector, divided the population into different categories and advised how each should be treated.
Category 7 was defined as ‘completely dependent for personal care, from whatever cause, physical or cognitive. Even so, they seem stable and at no risk of dying’.
That would have covered my daughter. Categories 7 to 9 were to be denied lifesaving treatment.
Legislators have a duty to be rigorous and fair. You cannot make laws because Dame Esther Rantzen lobbied the Prime Minister, or because someone’s granny had an avoidably terrible death.
This should never have been a Private Member’s Bill. It has not had the scrutiny or the parliamentary time necessary for such a momentous change in the way we live and die.
It is a law for the strong and determined against the weak and the vulnerable. All of us in Parliament should know which of those needs the most protection.
Baroness Monckton MBE is a Conservative peer. The fee for this article has been donated to Team Domenica, a charity supporting work for the learning disabled.
