No Time To Die

Tourette's Hero writes:

The current Government won the election and took office on the 5th July. On the same day, the new Health Secretary declared the NHS to be ‘broken’. He said it faced the biggest crisis in its history and could not be fixed overnight. For sick and disabled people, this is far from the only crisis we have to contend with. Education for disabled students is in chaos and adult social care is on its knees. As a disabled person I don’t have equal access to transport or work and there’s a huge shortage of accessible homes. Research by Scope last year found that, on average, it costs disabled people an extra £1,122 per month to live. It’s in this context of neglect and systemic inequality that the Government has turned its attention to Assisted Dying.

In exactly one month’s time Parliament will debate and vote on the ‘Assisted Dying for Terminally Ill Adults Bill. ‘Assisted Dying’ is a euphemistic term for assisted suicide, where people are legally helped to end their own lives by medical professionals. I have grave concerns about assisted suicide, not because I lack empathy towards those who want it, but because I know how hard it is to live at the intersection of pain, ableism and failing systems. I’ve had these concerns for a while, but this is the first time I’m sharing them publicly. I’m doing it now because this Bill is dangerous.

A digital drawing by Jess Thom that echoes the poster for the James Bond Film - No Time To Die. This is written in gold text in the bottom right corner of the image. A silhouette of a wheelchair user is at the centre of the image behind them is a silhouette of a syringe.

While I’m not terminally ill myself, my views on assisted suicide are informed by my experiences as someone who currently has chronic pain, requires round the clock care, is a wheelchair user and needs help with personal care. I’ve heard all of these being given as reasons why someone might want assisted suicide, and while some felt shocking or frightening at the first, once I adjusted, they quickly became manageable.

Disability Justice activist Alice Wong has written a lot about ‘Disabled Oracles’ and the idea that we have valuable perspectives, skills and knowledge to share. Our leadership and insights can help shape the future, if only those in positions of power are prepared to listen. My day-to-day experiences show me that our lives aren’t valued in the same way as non-disabled people’s, and that this lack of perceived value makes it easier to ignore our human rights. Before making up your own mind about this Bill, please read on.

I’m acutely aware of how fragile my life is, but this fragility has little to do with my body or medical conditions, and everything to do with the constant threat of my support being cut. With the right support I have autonomy and choice – without it my life immediately shrinks.

My quality of life is something I have little control over and as a result one of my biggest concerns about assisted suicide is the risk I face of being pressured into it. I’m not just talking about overt pressure from relatives, there are more subtle pressures too: societal pressure, pressure on resources, and an internal pressure to conform to an ‘expected’, ‘ideal’ or ‘past’ version of myself.

I still remember exactly how I felt when a social worker sat in my living room and talked to me about my ‘very large care package’. Back then I wrote: “each time my social worker mentioned the size of my care package, a part of me experienced an all too familiar flicker of shame for taking up so many resources, and it’s hard not to let the negative narratives of ‘burden’ and ‘dependence’ that dominate discussion of disability impact on how I feel.”

We’re not dealing with assisted suicide as an abstract ethical dilemma, or in the context of an ideal scenario, we’re discussing its implementation now, within our current flawed and failing systems, and this very clearly isn’t safe – lives are at stake.

Of course, not all disabled people will feel the same, and I can only speak for myself, although there isn’t a single disabled people’s organisation in the UK that supports assisted suicide.

With that said, I’m going to address the points that are most important to me:

This Is A Disability Issue

When disabled people raise concerns around assisted suicide, responses often include statements like, ‘If you’re not terminally ill then you’re not in danger’. But disability is completely relevant for a number of reasons.

The prognosis and assessment of life expectancy is imprecise. I know many disabled people who’ve lived much longer than they were predicted to.

Wherever assisted suicide has been legalised, who is eligible for it has been extended. That pressure has already started in the UK with 54 MPs calling for the scope of the Bill to be widened to include anyone who’s ‘incurably suffering’.

When you look at the reasons given by those choosing assisted suicide in other countries you’ll find that many of the most common responses are connected to disability. Research from Oregon found that top reasons included, ‘loss of autonomy’, ‘inability to participate in enjoyable activities’ and ‘being a burden’.

A Canadian study of Medical Assistance In Dying (MAID) found: “Main reasons for requesting MAID were a self-perceived unacceptable quality of life, most commonly owing to loss of independence, mobility, ability to communicate, a sense of purpose, and participation in meaningful activity. Some people expressed fear of future suffering and future disability. Pain was seldom mentioned as a cause of suffering.”

Being a ‘burden’ or experiencing a loss of autonomy, mobility or communication, relate directly to disability because they’re about the availability or absence of aids, equipment and good quality social care. For example, without a wheelchair I can’t leave my bed, let alone my home – but the current wait for a wheelchair where I live is over a year. Even when you eventually get access to a specific service, the eligibility criteria can be very restrictive, meaning that many people don’t have access to equipment that might be transformative. For example, if you can push a manual wheelchair indoors at all you’re unlikely to be eligible for powered chair – outdoor mobility isn’t considered at all. Wheelchairs are just one example – the story is similar for communication aids, social care, pain clinics, physio or occupational therapy.

What Safeguards?

People in favour of assisted suicide often say there will be safeguards to protect vulnerable people from coercion. But what are those safeguards? The only answer I’ve ever found is that two doctors will have to sign it off or a social worker or judge will be involved. This doesn’t reassure me, and here’s why:

Many of my most distressing experiences of disability discrimination have taken place in medical settings. I’ve been called ‘It’ at a specialist hospital, and spoken over and ignored more times than I can count. I’ve waited years for routine procedures such as smear tests due to a lack of basic access. My sister, who’s a doctor and comes with me to many of my medical appointments, always starts by listing my achievements so that the doctor understands that I have value!

Of course, I’ve had good care too, but I’m yet to meet a disabled person who hasn’t had some negative experiences in healthcare settings. If doctors have to be told by other doctors why disabled people are ‘valuable’, is it safe for them to be making decisions about accelerating our deaths?

I love the NHS but I also know that it’s systemically ableist and that those most at risk also experience other forms of systemic oppression and marginalisation. To understand the danger of assuming that safeguards will automatically keep us safe we should pay careful attention to those who are already being harmed by our healthcare system. The Government’s own reports show that learning disabled and autistic people are experiencing ‘intolerable treatment’ and long-term confinement in so-called ‘Assessment and Treatment Units’. In 2012 my friend Amy died in one – she was fourteen.

If the Health Secretary thinks the NHS is ‘broken’ why would we ever introduce assisted suicide before we’ve addressed the decades of neglect and underfunding that make it so unequal?

In the current economic and political climate I have similar concerns about social workers and judges – as do they.

What we need is urgent investment in end-of-life care that tailors support to individual requirements and preferences. Palliative care in the UK is a postcode lottery – until this changes, we shouldn’t be considering assisted suicide.

Whose Choice?

Some people respond to the issue of assisted suicide by saying it’s a matter of personal choice, but this misses the reality of how the lives of disabled people are restricted. My autonomy is reliant on having the right support. All my choices are impacted by the decisions of social workers and NHS Continuing Care assessors. While I currently have the support that meets my requirements, this hasn’t always been the case. I used to spend my weekends in bed unable to get up because I had no support. If I had a seizure-like episode I had it alone, often rubbing my skin raw on the floor as a result. What were my ‘choices’ in that situation? Without the right care, the idea of personal choice is meaningless. Under certain circumstances it would be easy to think that assisted suicide was my only choice, and that really worries me.

On the 15th June 2017 Colin Campbell was scheduled to die of his own choice in Switzerland because life with multiple sclerosis (MS) felt unendurable. While he waited for his appointment, he talked to the BBC about his decision . Hearing this, a person called Rona, who has the same condition and lives in the same city, reached out and helped him access support and a mobility scooter. Getting support gave Colin ‘a glimmer of hope’ and he called off his appointment to die.

Saying assisted suicide is a matter of a personal choice misses the complex, often invisible, reality that disabled people face. Do we really want a ‘right to die’ before we have a right to independent living?

A Two-Tier System

At its most basic, a change in the law risks creating a two-tier system where non-disabled people are offered suicide prevention while disabled people get suicide assistance.

In countries where assisted suicide has been legalised there are examples of disabled people requesting support and services but being offered assisted suicide instead, essentially because it’s quicker! This might sound unbelievable but you can read more here, here, here and here.

While the details of the Bill aren’t yet public, in previously proposed legislation, the wait for assisted suicide was 14 days. This is significantly quicker than many forms of disability support, for example it took 11 months to get my NHS Continuing Care support agreed, people in pain are waiting two years to see a pain specialist and getting a wheelchair accessible home can take up to 47 years!

Financial Incentives

We can’t talk about assisted suicide without discussing money, and the financial implications – both individual (inheritance) and collective (public money).

I find it hard to think about, but I cost a lot to keep alive. This money pays for my support workers and is funded through a mix of NHS Continuing Care and Access To Work. Others fund their own care, particularly those with savings or additional property. If you’re paying for expensive care and can see your resources dwindling, it’s not hard to imagine that opting for ‘assisted suicide’ might feel like the right thing to do for your family.

Better Off Dead?

Disabled actor, activist and excellent human Liz Carr has made an incredible documentary about assisted suicide called Better Off Dead? The final scene shows a group of disabled activists talking and laughing together, and while the film’s full of incredible moments and important points, what struck me about this ending is how rare it is to see a group of disabled people on TV enjoying each other’s company. There’s an assumption that to be sick or disabled is so relentlessly miserable, we’d be better off dead. Liz’s film is a reminder that this is entirely wrong.

I understand the compassionate arguments in favour of assisted suicide, but my experiences as a disabled person have shown time and again how easy it is for good intentions to have terrible consequences.

Here’s the hardest bit to write… sometimes I feel like I’ve had enough! I get exhausted, worn down by everything being a battle, by uncontrolled pain, by the emotional realities of my intersecting impairments. I have to ask a lot from people I care about, and I have to ask often. Sometimes it’s just too much. What I need in those moments is care, reassurance, and practical help. I’m scared of the decision I might make if I was at particularly low point and got offered a fast track to death.

If you share any of my concerns about this Bill, I urge you to write to your MP – there’s a template letter here. Share Liz’s film, talk to your friends and family, and if you can, support Not Dead Yet UK and Disabled People Against Cuts. 

This is no time to die.