Disabled witnesses and people with lived experience of mental health conditions giving evidence to the Assisted Dying Bill committee have spelled out to members how the bill moving to legalise assisted suicide for terminally ill patients has “fundamental flaws”.
In particular, a witness speaking to issues around coercion and eating disorders posed an imperative and soul-searching question to the committee. That is, “how many deaths” of disabled people would they be “OK with” if it were to pass?
Assisted Dying Bill committee: disabled witnesses speak out
On Wednesday 29 January, committee members for Kim Leadbeater’s Terminally Ill Adults (End of Life) bill commenced its second day of oral evidence sessions.
Notably, it presented the first opportunity for members to hear from disabled witnesses. In the morning sessions, this included disabled lecturer in social policy and disability studies at the University of Leeds Dr Miro Griffiths. Griffiths was previously an academic consultant for Liz Carr’s groundbreaking BBC documentary ‘Better Off Dead’, and works with Not Dead Yet UK campaigning against the bill.
Founder of eating disorder organisation Eat Breathe Thrive Chelsea Roff also attended the session. Roff and a colleague completed a systemic review of assisted death in eating disorders across multiple jurisdictions. While Roff was primarily there in her researcher capacity, she also herself has lived experience of severe anorexia.
Needless to say, both have come out against the bill.
Professor Tom Shakespeare also provided evidence to the committee. By contrast, Shakespeare supports the bill. During the session, he briefly mentioned how he has been having conversations with Labour MP Marie Tidball outside formal evidence gathering meetings. Tidball is the sole disabled MP on the committee – and she happens to be broadly in favour of Leadbeater’s bill.
Following this, in the afternoon, the committee also finally heard from a representative of a Deaf and Disabled People’s Organisation (DDPO). As the Canary has consistently reported, Leadbeater and supporters of the bill have shown repeated hostility to including a DDPO in the oral evidence sessions. She made a last-minute amendment on Tuesday 28 January to shoehorn an employee of Disability Rights UK (DRUK) into the proceedings.
Head of policy Fazilet Hadi spoke on behalf of the organisation during the afternoon session.
However, it’s little wonder Leadbeater and pro-assisted dying company didn’t want to hear from them. Because during the session, DR UK and other disabled witnesses well and truly exposed the gargantuan glaring cracks at the heart of the bill.
Coercion is key
Coercion was obviously a key sticking point in witnesses’ responses. As the Canary has repeatedly highlighted, there are huge risks around this – not least because politicians and the corporate media have pushed the narrative that disabled people are a burden.
So to start, Griffiths told the committee that the principles in the bill purportedly covering coercion are:
incredibly weak in terms of the scrutinising and also the process of how you judge whether coercion has taken place.
He argued that there’s nothing in the bill, nor society more broadly to ensure disabled people know their rights. He voiced to the committee that:
Lack of advocacy services available to disabled people, lack of support for disabled people to have accessible information about their rights. So if you feel that assisted dying is your only choice, as opposed to accessing support, calling out discriminatory practices within access to social care, access to health care and so on. This again highlights issues where coercion will manifest.
The infrastructure to support people to either respond to coercion, or understand that you don’t have to be in that position in the first place, is non-existent.
Power dynamics of practitioners and patients
Largely though, Griffith’s concerns centred round physicians’ role in facilitating assisted dying. For this, he worried about doctor’s fallible prognosis and how the power dynamic of practitioners providing assisted deaths could exacerbate the risks of coercion.
As if to highlight his point, Roff separately put forward evidence of coercion in the context of her research on eating disorders and assisted deaths. She explained to the committee how:
Sometimes it [coercion] comes tragically from the clinicians themselves. We saw 95% of clinicians tell the patient and their family that they had an incurable, irremediable illness with a six month of less prognosis…
That has an influence on someone. That does not cohere with the evidence on eating disorder recovery.
Building on this, she gave an example of an eating disorder patient and family she has been working with in a case at the Court of Protection. She explained how the eating disorder team had:
presented her and used the term ‘not treatable’ to the judge, at the stage of her illness, predicted she would die in six months. 18 months later, they’re still fighting for treatment and are being denied services.
On her X, Roff linked to some of these cases after the session:
1/ Today in Parliament, I referenced Court of Protection cases where young women’s eating disorders were described as “terminal,” “end-stage,” and “not treatable.”
Here are the receipts. 🧵👇 #AssistedDying
— Chelsea Roff (@ChelseaRoff) January 29, 2025
The medical model: a failure of empathy, and more risks
Labour MP Naz Shah brought up the question of doctors coercing patients in the afternoon as well. So, Hadi highlighted that the predominant medical model was a big part of the problem in this. She told the committee that:
Disabled people share their stories with us and other organisations, and I’m sure doctors are mixed, like all of us. But our experience of the NHS and the medical profession isn’t wholly positive. We often find that doctors, because they can’t treat or cure us, do devalue our lives.
As a result of this underlying medical stigma, she explained how:
We’ve [DR UK] had disabled people who’ve actually had it suggested to them or their families that their lives are expendable – when actually those people have got a lot of years to give.
Moreover, she expressed that disabled people would also potentially be more vulnerable to what doctors tell them. She said that:
When you acquire disability – which most people do, most people aren’t born with one, it is absolutely frightening…You will have that fear, because you’re not used to it. And so whenever you acquire a disability or that disability gets worse, you will have fears.
So that makes what doctors say even more important. And if doctors aren’t on our side – because actually they’re thinking should we mention the fact they could have an assisted death. I think that poses a big cultural issue for the NHS, but also for us having confidence in the NHS.
Hadi detailed that in her personal experience, she had found that the NHS as an institution is one of the:
least comfortable with disability.
Specifically, she drove home that doctors don’t always have the “empathy” to:
understand that some of us live very good, fulfilled lives with the most complicated health conditions or impairments.
Given this, she emphasised serious concerns about doctors taking the lead in bringing it up as an option for patients. At a later point in the session, she drew attention to the very real dangers disabled people have already faced under the supervision of medical practitioners. Notably, she said:
We only have to go back five years to the pandemic to see how disabled lives were devalued.
Put simply: the eugenicist scandal of do not resuscitate (DNRs) orders. However, she also highlighted a number of other forms of healthcare discrimination that the pandemic drew into sharp relief. Specifically, disabled people deprioritised for access to critical care, and learning disabled and young people’s disproportionate deaths.
Definition of a terminal illness
Leadbeater and assisted dying proponents have consistently hidden behind the fact that the bill is only applicable for terminally ill patients with six months or less to live.
However, witnesses to the committee also highlighted some of the reasons why this is massively reductive of the reality.
For one, Griffiths argued this underscored a “fundamental flaw” in the bill. Specifically, he told the committee that bill supporters have made a:
nonsensical division between a terminal illness and what constitutes being a disabled person.
By this, he was referring to the fact that by definition, terminally ill people are disabled. That is, under the Equality Act 2010, it defines someone as disabled if they:
- Have a “physical or mental impairment”, and
- “the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities.”
In short then, the bill is fundamentally about disabled people, so inevitably it will affect disabled communities. In the afternoon session, Hadi echoed this:
I don’t know how you can exclude disabled people, because there’s a huge overlap between disabled people and people will then at some point become terminally ill.
Disabled people at risk of being labelled ‘terminally ill’
But, the biggest issue as witnesses saw it around the definition was in its vague wording that left it ripe for abuse. Griffiths raised the significant ambiguity over the ‘six months’ clause. Notably, he questioned what “constituted” six months in the context of disabled people relying on medical devices and assistance. Notably, drawing from his own lived experience he posed to the committee:
For example, with myself, with a progressive conditions, which continuously gets weaker, and has respiratory complications. If I remove my ventilator – which I use at night – if I remove medical devices and engagement with therapeutic services, does that constitute then that I will have a terminal illness? Because my rapid acceleration towards death becomes more evident?
Illustrating the fluidity of the term further, Roff expressed how she’d found that:
Laws in other countries have expanded through clinical interpretation, not just legislative amendments – there are clinicians, a very small minority, that disagree and have characterised anorexia, by name, as a terminal illness. But they have also said that eating disorders qualify because of the physical manifestation of the disorder.
In other words, the way the bill currently defines ‘terminal illness’ is open to interpretation and abuse by medical practitioners. Furthermore, she argued that the definition laid out in the bill:
makes no distinction between a person who’s illness can become terminal if they refuse or cannot access treatment.
For instance, someone with diabetes. Type 1 diabetes affects 300,000 people in this country – often co-occurs with eating disorders – the way this is written, would not prevent someone who chooses to stop taking insulin from qualifying as terminal.
Crucially, this isn’t some far-fetched alarmism either. Roff articulated that this is actually happening in the US and paraphrased that the American Clinicians Academy on Medical Aid in Dying has actually said:
legally, there is nothing in the letter of the law that explicitly prohibits voluntary stopping of eating and drinking as a terminal diagnosis to qualify for assisted dying.
Disabled people support the bill? Here we go again
Shakespeare was supportive of the bill throughout. Bar a few suggestions for tightening aspects of the bill, he largely confirmed that he saw it posing few risks to disabled people – contrary to what the other witnesses were evidencing.
He did also raise issues around healthcare access, and palliative care, and proposed that the bill could include a “neutral advocate” to support terminally ill people in their decision. However, it was clear he was singing to the same hymn sheet as Leadbeater and Tidball.
This was none too evident when he repeated the misleading argument that:
Most disabled people support the bill.
Of course, his assertion is based on poll results purporting to show this. However, organisations presenting these haven’t exactly worded these in a non-partisan way. Moreover, there may be issues in how they’ve conducted these and if they’ve done so inclusively. There could be self-selection bias in the sense that severely chronically ill and disabled people would be less able to participate in these.
Moreover, all 350 DDPOs oppose the bill. He acknowledged this, but dismissively stated that:
Politically, the disability rights community are against assisted dying…they always have been. That does not mean that they reflect what ordinary disabled people want. You should be interested in what people want…and they want this.
In the afternoon session, Hadi picked Shakespeare up on this point:
Disabled people aren’t a homogenous group. Just like the general population, disabled people will have all sorts of views. Some will be very informed about this debate, others won’t be. Our position at Disability Rights UK and disabled people’s movement, isn’t about counting how many people are supportive or not supportive. It’s much more our knowledge and evidence about how society works. How discrimination works, how equality works, and the barriers we face.
Back in the real-world…
Overall though, disabled witnesses at the session made clear that the bill does pose significant risks to disabled people. Contrary to Leadbeater and co’s repeated assertion that it has the strongest safeguards in the world, they showed that these are anything but.
Leadbeater asked each of them what they’d want to see in the bill to address their concerns it will harm disabled communities.
However, she was missing the point – and the witnesses made that abundantly clear to her too.
Hadi told Leadbeater:
In the real-world, is it very likely that this bill won’t have implications for the way people think, for the way doctors, health authorities think about disabled lives?
In the real-world disabled people who already face challenges in their lives being valued, we will come across that shift in culture much more widely than this bill wants to happen.
We’re trying to create a society where disabled people are equal and valued. And the bill actually makes it harder for us to reach a disability-inclusive society.
She also raised the vital point that the bill isn’t happening in a vacuum. She told the committee that:
Looking at health inequality – I take your point that some of us can afford to fly off to Switzerland and some can’t – but some of us live in boroughs where we’ll die ten years earlier. And some of us have learning disabilities and we might die 27 years earlier.
This bill will go into the real world and that’s what’s happening in the real world. People aren’t getting social care, aren’t getting palliative care, they are dying earlier. More poor people will die earlier, and more poor people will have less options, less choices, less nice homes, less facilities to support them… and insufficient social and palliative care.
Ultimately, Roff laid out in no uncertain terms what parliamentarians are deliberating over – and that’s disabled people’s lives:
Could this bill have knock-on effects, that affects some of your most vulnerable constituents – and how many deaths are you OK with? If the safeguards fail once, that is a human being who may have been at a despairing moment who was handed a lethal medication instead of the care, and the treatment, and the help they need.
That should be obvious: not one single death. However, as many of the witnesses underscored, devaluing disabled peoples’ lives is so ingrained in the UK’s ableist society, that we know to many MPs supporting this bill, that isn’t their answer.
Featured image via the Canary
