This month is Disability History Month, and the theme is Disability, Life and Death. The aim of the theme is to encourage conversations about the Assisted Dying Bill, which is currently being discussed in the UK Parliament. A similar bill, the Assisted Dying for Terminally Ill Adults (Scotland), is also currently being discussed in the Scottish Parliament.
Views from the muscle wasting community on the Assisted Dying Bill
As an organisation, we neither support nor oppose a change in the law, but we wanted to hear thoughts from you, the muscle wasting community. We shared a poll to ask you whether you are for or against the bill, and asked, “If you support the Assisted Dying Bill, why?” and “What concerns you about it?” This content may be sensitive for some readers.
The Assisted Dying Bill is a proposed law that would allow terminally ill adults in England and Wales, who are mentally competent (able) and have six months or less to live, the right to request life-ending medication. The Bill aims to give people greater choice and control at the end of their lives, under strict safeguards to prevent abuse.
Currently, the Bill has passed its second reading in the House of Lords and is at the committee stage. Having already been passed through the House of Commons, with campaigners, charities and individuals on both sides sharing their perspectives. If it progresses, it will need to pass several further stages before becoming law.
In Scotland, the Bill is running on a separate timeline to England and is at the second stage going through amendments. If it passes the second stage, it will move onto the final stage.
Thanks to everyone who shared their thoughts and emotions on this difficult subject. We wanted to reflect these back to the wider community.
If you are for the Assisted Dying Bill, why?
For some of you there was a strong belief that people should have the right to choose what happens at the end of their lives.
One person in the muscle wasting community said: “Nobody deserves to die in pain, when they could choose the way they go, and they have an option.”
Another said: “Dying with dignity and choice should be considered a basic human right for everyone.”
Dignity and personal autonomy were common themes in the community responses.
One person wrote: “Ultimately a person has the right to decide if the life they are living is of an acceptable quality.”
Similarly, another community member said: “Allow people to make their own decisions with regards to dying with dignity.”
Somebody also replied that the Assisted Dying Bill: “gives people dignity and choice in the final moments of their life.”
Many people focused on compassion and relief from pain. One person said: “People deserve to have dignity when they die, not suffer in pain or feel humiliated.”
Another community member added: “We should have the right to die with dignity – it’s our body and us that suffer.”
What worries you about the Assisted Dying Bill?
Some other people shared a range of concerns about the Bill.
Some felt frustrated by the slow pace of change, saying: “That it won’t come soon enough.”
Most were more cautious, highlighting the importance of proper support: “Funding is needed to support people, so assisted dying is a choice not the only option.”
Several respondents worried about vulnerability and misuse: “I worry people will feel it is the only option left, when in fact it’s not.”
Others expressed the need to make sure “it’s only being used as a last resort and/or not exploited,” and “It needs to be correctly managed as in terminal illness and severe disability only.”
What happens Next?
These bills will continue to make their way through the UK Parliament and Scottish Parliament in the coming weeks and months and we’ll continue to follow developments closely and share updates as the Bill progresses.
Whatever the outcome, it’s clear that this issue deeply affects many people within the disability community — raising complex and important questions about rights, dignity, and how we support those at the end of life.
Assisted dying is an incredibly complex issue. People often have very strong and personal opinions about it and we know that within the muscle wasting and weakening community people will have a range of different views.
At Muscular Dystrophy UK we are here to represent everyone in our community. We neither support nor oppose a change in the law. Our focus is ensuring that any debate and legislation considers the needs of people with muscle wasting and weakening conditions and safeguards them and those who care for them. We would never want anyone to feel pressured into making a decision.
It’s essential that people with muscle wasting and weakening conditions receive the best possible care and support from both the NHS and the social care system regardless of their age, condition, or where they live.
