When it comes to discussions of assisted di3ing or assisted su1cid3- it is important to take note of the secrets hidden within. Each insight, for and against, is two sides of the same moon-one dark-and one dazzling with hope; which side helps disabled people?
Have you ever looked up at the moon in a dark night sky and wonder of its secrets? Me too!
As a disabled person, I spent many nights twisted awkwardly in bed, in so much pain, desperate for a glimpse of moon because I had barely left my bed for days…or weeks… a glimmer of hope, of light, of moon beams glinted through my curtains, to guide me through yet another restless night. The moon was as good as it got for me. Enchanting me with hope for better days ahead, and luckily with the spells of darkness illuminated by lunar beauty, the magic came true, I am healing and very happy now. Happier than ever. I have support to thank-and, the moons mindful magic.
It’s a secret I am no longer ashamed to share. As a disabled person I was bed or sofa bound, and desperate to move. To be free. To live. Desperate to be out in nature. Desperate, and isolated by society in my attempts at screaming into the void for help and hope, when the void echoes my own shrieks back at me, trapping me in my own miserable containment.
It can seem like an endless 'forever', when there’s no support. Inescapable. And when it seems like forever, it’s no secret - for anyone - that people like me, may become depressed and turn to thoughts of ending that ‘endless’ suffering they endure.
I was desperate for the pain to end, and yet when society takes away support to live at a healthy baseline (not in poverty, or able to quickly access medical aids or medications as needed for example) they leave vulnerable people like me, with seemingly one option- and that option should never even be considered, but it’s no secret that it is.
Now, society is not only removing (barely there) support to create this option of ‘ending the forever’ as a tangible solution, but society (some MPs, advocates and charities) also advocating to widen the assisted d1eing bill (from terminally ill people with 6 months to live) to include disabled chronically ill people like me, with 'incurable' or 'inescapable' suffering. but some people like me... have hope for healing and happiness, if society prioritised our lives, that is. Look at me now; I'm healthier and happier and I would not even consider ending it- but try telling me that a few years ago, and I would have scoffed at the very idea I could feel better or healthier. my environment prioritised my health, and I got healthier - I am still disabled and chronically ill, but I feel a million times better, where now I wouldn't consider, what I once would have seen as an actual option. So society is fighting to encourage, not only assisted di3ing, but also widening the bill to include people like me; They sing it from the roof tops, “We’ll schedule you in, we will help you d1e with respect!” all while purposely ignoring our screams, our shattered pleas into the void. Those with terminal issues, are also likely to consent to assisted d1eing, purely to end their societal born suffering, sooner; where as under the right circumstances they would prefer to d1e somewhere comfortable, like as home, and not in hospital with a lethal injection.
It’s gross when society could instead actually support us to live, support us so we have access, are not in poverty, are not in constant fight or flight stress, not fighting for our rights and jumping through hoops for basic supports. Society could empower us to live, and not coerce our consent when there seems to be little other choice-especially if society provides such little support and baselines of dignity for disabled and sick people, that without assisted di31ng, people face an undignified d34th because they cant access support on the terms that better care for them and their needs and holistic wellbeing.Why can’t society make life, liveable to begin with? Why can’t society or those in power listen to disabled people? Make changes? Why? Because it’s not about supporting disabled people-it’s about slyly finding ways to k1ll us in ways that the public won’t point and scream “fasch1st eugen1cs!”
Because that’s society’s secret - it is able1st and fasch1st and inspired by eugen1cs and its aim is to control the population, whether through capitalism or poverty and forced lack of privilege, because then it’s harder for oppressed minorities to rise against the machine and threaten (the powerful in societies) livelihoods. Society’s biggest secret- and weapon -is eugen1cs, hidden behind a thin veil of ‘support’ and it’s a weapon of mass destruction- and it’s coming for disabled people-a minority of humans, where literally any abled human on the planet could also join at any time. If that secret shame does not terrify-it should. It’s a secret advocates like me wish to the moon and stars for recovery, for healing, for our stories shared and shining for everyone to see, for everyone to admit it’s reality and worth- as brazen and true as the sun on a clear day.
It terrifies me too; It’s no secret that I am disabled, and yet few know just how disabled I really was. I have C-PTSD for many reasons and this is just one of them. Why am I sharing this? Because this bill, while stated currently to only be open to terminal patients, also impacts people like me, and even, people like you, because we are all impacted by society, and our lives can change at a moment’s notice; it’s not only sickness that can make you terminal – car crashes, for example, could too. This impacts everyone, especially if, like advocates suspect looking at patterns worldwide, that the bill will be widened to include people just like me in the coming years anyway… which includes you, too, because everyone can get sick for any reason.
Why assisted d1eing is complicated:
One such secret, that is common in the minds of the chronically ill and disabled - is that - unless you live our life you may never know our pain, our efforts, and our sickness, though we try so hard to share. Society makes it their mission to stir up hatred and stigma and misinformation and misconceptions to enable the public to not see their weapon of mass destruction. If the public don’t believe disabled people really have it that hard and are actually just lazy or not even that disabled- then the public turns a blind eye to the lack of supports available to help them. The other secret that we advocates shout from the roof tops that abled society ignores? We are worthy of support and life no matter what. We can have fulfilled lives. Happy lives, safe lives, loving lives and our lives and livelihood and humanity and worth is never depending on how much we give back to society. Society’s not so secret? It doesn’t believe us when we cry that we are still worthy of support even if we cannot work or give back to it. Society, still deems us worthless, and by extension-inhuman-a worthless eater who is ‘okay’ to let starve or struggle or d1e because… what were we doing for society anyway?! It’s no secret that this ideology is disgusting, and yet that is the ideology taught by society with its shameful secrets. The worse part? Society doesn’t even seem that ashamed by its disgusting secrets-and neither do the un involved public. The public who are not involved in disability politics may think that assisted d1eing is a beautiful respectful thing- and the complicated part is that - yes- it is. its complicated because YES- on the face of it, without secret weapons and hidden agendas - Everyone should have the right to choose and to consent for their own life and dignity in de4th.
The secret the uninvolved public may not know; is that society purposely coerces consent by trapping us in poverty and enforcing privilege diversity to make it seem like the only way out. Therefore- in a society like this we cannot trust that society won’t just force us into unlivable situations while we could otherwise be perfectly healthy or happy and as capable as we can be- and then offer us a golden glittering way out-a gleaming moon of hope to enchant us.
But there’s two sides to the moon. And the dark side is not so transfixing.
So what can we learn from these secrets?
One-that, yes, it’s understandable that while it’s ableist to assume all disabled chronically ill people have lives that are not worth living (we have worth no matter what our lives are like, and life is always precious), but also the shady truth that, we should have a right to d1e peacefully and at our own dignity or wish, if living is too painful.
Lesson TWO,
That society actively ignores disabled people-which also means society ignores any attempts at education, humanisation or empowerment to make social and societal change to make life less painful, less exhausting and less effort for disabled people (just remember here that society effortlessly caters for non disabled people even if there are still struggles and hardships and injustice and privilege variants). The minority will always be disabled and chronically ill people and yet that minority is fastest growing minority and also the easiest to fall into if you are currently abled bod1ed and of capable mind/emotion/mentality.
What we can assume from these life lessons is that the right to d1e is the essence of humanity and dignity.
Yet the moon that shines light onto our dark path, is also painted in black on the other side. There is more than meets the eye.
Why it’s complicated - many charities and MPs are battling to widen the bill to include inescapable suffering- such as severe mental health issues, Parkinson’s, multiple sclerosis or perhaps conditions like CRPS. Where there’s no cure and no treatment - but no limit to life.
Again, the aim is to end suffering - not to give dignity in d3ath because that could have been provided anyway. And it’s complicated. My brother has CRPS which is known as the su1cide disease and often known to Medicine as the most agonising condition known to mankind. CRPS - chronic regional pain syndrome is a nerve disease caused by persistent injury to a limb - is a very rare definition of inescapable suffering. CRPS is likened to a life of torture amongst professionals and Patients- with constant agony (CRPS rates a staggering 45/50 on the McGil pain scale) with a baseline of medicated childbirth level of pain in affected limbs on rare good days (prepared childbirth is rated is 32/50 on the McGil pain scale) and CRPS is rated 10 notches above unmedicated child birth level of pain on most bad days (unmedicated child birth rated 36/50 on the McGill pain scale)... also because its nerve pain, the affected limb can spread to the whole body with time. 45/50 on the McGil pain scale... it sounds made up, doesn't it? its not. it is straight out of a horror story though. This also mean amputation isnt an option, because its in the nerves and not the limbs themselves. For reference, kidney stones are 42/50. Fibromyalgia is 30/50. a toothache or fracture is 20/50. A sprain is 12/50). Those who have only experienced a sprain level of pain, shouldn't really be judging the whole concept, which is why disabled people should be at the forefront of this discussion. I have fibromyalgia, and have had monthly chronic kidney stones, I understand pain, but this is beyond my comprehension. You would think given its horrific impact that it would be well researched, studied and treatments easily available Nope - and that is entirely societies fault. many conditions and illnesses and disabilities, that will be on the list to justify murd3ring people who would otherwise survive and thrive with support and access - are also under researched, underfunded and don't have adequate or effective treatments or access or medical care to make life liveable and even enjoyable due to lack of research and priority. There's no cure and treatment for CRPS (chronic regional pain syndrome) because it is woefully under researched and underfunded, it is near impossible to find limited and scattered treatment in the UK (we travel hundreds of miles for a pain clinic which doesn't help or work - which when you're bed bound in agony 98% of the time, is beyond impossible to access - and to be clear there's only one or maybe 2 like it in the UK and we are quite closeby really. Its expensive too, most treatment centres for CRPS you have to fly to America or Italy or Germany for example for treatment. This treatment you fly for is also tens of thousands of pounds for the privilege or being at a lower pain level for maybe 6 weeks with daily treatments (lets be clear – that lower pain level is about the same, according to the doctors and specialists, as walking on shattered bones, being severely burnt - as apposed to being actively on fire due to nerve pain - and having heart attacks). I understand treatment and cure could be unlikely even with research and funding, but surely there should be places of treatment in major cities in every country? there should be more CARE, more support, live in centers, in major cities, at the very least. I grieve for my brother, and behalf of my brother, everyday, I miss him terribly and he s best friend; everytime I even think about the desperate helplessness of his situation my eyes well with tears, my heart thumps, I projectile vomit, and I have a complete break down.... and then I shutdown and faint and have seizures. writing this took me a while... I can escape his suffering because its hard for me to cope and support. he cant. And because society can distance itself from suffering, that it helped to create, society can also justify creating unliveable situations, and then offering d34th like a shining prize for a game they made us lose. For him society sees inescapable suffering - and they’re right bar one important note - if society prioritised disabled lives to support us - he would have access to pain management and treatment or hospice to improve quality of life where he may more likely consider staying, if he were to become eligible. If the bill widened to include him, His consent would be coerced because society made it impossible for him to consider to stay. If he didn't have family, and was isolated, people like him would likely feel there's no choice - because they were given no choice by society. If treatment was accessible and his daily living could be improved with pain treatment access where he could get out of bed and maybe play a board game or walk into a garden 15 meters away- that would improve his life substantially. But society refuses to research how to help, makes treatment impossible to find and impossible to access. Society coerces consent in a man who is the strongest and most loyal I know - even before he became sick - a single dad who desperately wants to be well for his small daughter. The bill being widened to include people like him, and me, and those with incurable suffering (which also preludes to ableism and misconceptions which can be taught to individuals to believe it about themselves – that they’re not worth saving - and there's no point saving them because we are not worth supporting anyway). Respect and dignity in d3ath is a beautiful concept but unless society is first working on improving access and human rights to life, with research for cures and supports and aids and much more, we should not yet be considering this level of assisted dy1ng because most people choosing to d1e are coerced to do so and if society decided to help in some way - they wouldn’t choose to d1e anyway. I sit on the fence-the precipice of light and dark- I am only all for assisted dy1ng to end endless suffering, because dignity and peace and holistic wellbeing is important - but only if society is bending over backwards to save them and make their lives liveable first - which, society isn’t.
So where does that leave me? Ultimately, people have the right to choose, but it shouldn’t be encouraged. It shouldn’t be dangled like a prize in front of them. If the bill goes through, at the very least disabled people should be part of the discussion and form the plan and be listened to with their ideas and expertise at the forefront of the discussion and plan making. At the very least it should be a longer process of safe guarding, and also an optional transition period of a few years for those like me, who may be eligible in years to come when society manages to widen the bill to include us (because that's the secret weapon after all - we cost society less, d34d - and this way, they don't look bad for murd3ring us)– so if and when the bill includes us, it should be an exhausted search for improvement and access and improved human rights and research and medicine and therapy provided by society to improve liveability, and then, access to choose to end it where they can change their mind at any time, at the very least. At the very least there should be access to support to tick things off a bucket list-from small to big, in whatever way can be made to be safely accessible. At the least it should be a 5 year wait at least - where the aim is not wait to die, but to see if its possible to live - with a promise of actioned improvement, and if society can improve things – in multiple areas of life for the individual, the individual can remove their consent, and if not, its blood on societys hands – but they’ve it least made the last years of life as liveable as possible. Yet another d3ath by a thousand cuts.
When society ignores disabled people, it’s creates the spaces, environments, mental health issues, disabilities and sicknesses that harm disabled people to the point of creating all this extra pain and effort and exhaustion lack of dignity .
However if society, after causing this excess disability also calls out “hey! You’re struggling to live so how about we help you d1e!”
That’s painted as a good thing to a misunderstanding and ableist society
What society should be saying is
“We hear you and value you. We will make changes to society and daily living to reduce the poverty, to empower disabled people to safely work if they can and access a safe amount of money and provisions even if they cannot work, to make amendments to benefits and work capability assessments and treat disabled people as humans and not worthless eaters. We will help you live, so your consent to d1e is not coerced in anyway. Hopefully by supporting you to live healthier- you won’t even consider d1eing in the future.”
D1eing is not the answer. This is simply a shy way of ramping up blatant able1sm, and eugen1cs in our rapidly growing fasch1st society.
Imagine it this way:
Story time.
After Assisted Dy1ng is legalised for terminal patients with 6 months to live: Sheba, who owns a beautiful 5 bedroom house with a few acres of land, has a stroke one day, and is visited by her long lost estranged great son in law - who she hasn't seen or spoken to since he was a beaming babbling, toddler bundle of joy and innocence. Now though? He visits every week it least, even though he lives far away. “You’re the priority – of course I’m here for you” he says warmly to her, holding her hand as they drink tea in the living room, overlooking the meadow in her back yard. “you’re my priority right now” he says, as he gazes out the window, a small smile on his face, as the birds sing in the far away trees. She glows, an ache in her of isolation and burdensome thoughts, fading away.
He was talking about the garden, the grand old house set on acres of farm land, but she didn’t know that. Their conversations are kind and pleasant and filled with a kind nostalgia of his parents growing up on the farm and how much it means to him. He comes over and fixes her home up with a calm expertise, stories and adoration for the architecture appreciated under his watchful gaze. She glows a little more every time they meet. He loves her home, and she loves him.
She looks forward to his visits, feeding him sandwiches and cakes, and gifting him little things here and there, sneaking a £20 into his coat pocket whenever he left. Of course he was a good boy; he never asked for money or complained – and if she offered money he never took it. He praises her for living independently, “I’m proud of you, doing all this alone; I’m the only one here for you but admittedly I would struggle if you needed more care…” sometimes, his words were strange, like the subtlest of manipulation, that on the surface, sounds supportive, but something niggles in her mind. She doesn’t know yet that its d3ath by a thousand cuts – that each subtle manipulation is a scratch, that on its own looks innocent and kind even, yet each scratch observed together, form the blood1ed cut that k1lls.
So she rations and reasons with herself- It cant be that bad? Its not like he said she couldn’t also move out to a care home, like she had hoped to when her eyes started getting worse? They discussed it and she always openly shared her thoughts - she wants to sell her home, and with the money, move into a care home with her bed and her belongings by her side - and he nodded and smiled and never said a thing. He understands, she thinks, and the discussion moves on, lulled into a false sense of security.
Then some months go on, and its dropped into nearly every visit - but never in response to her words, just randomly mentioned, often in passing or when reading the newspaper and something similar comes up about the cost of living “those care homes are a huge waste of money- A scam in my opinion – you should be spending your money on enjoying your last years not paying people who don’t even love you to look after you. It wouldn’t be right, being cared for by someone who doesn’t love you. no wonder there’s so much abuse in those places. If I had to, I’d care for you, you’re my priority and I would pull strings and quit my job and make it happen. You’re not moving into a care home if you don’t want to. You don’t need to worry. You’re my priority” and through the glow of love, the cracks begin to show; She didn’t want to believe it, even though subtleties had made her question his sudden interest with less kind assumptions. “Stop it you old girl, hes being kind” and yet she never quite believes it.
With time, dear Sheba gets sick and has a fall, and her son in law visits her in hospital everyday while she has tests and treatment, full of kindness and compassion and never a bad word to say, yet somehow, the subtleties of manipulation are there: “I don’t like seeing you like this so, dependent on others now. That nurse was rude to you. you deserve better” and she thinks to herself “was the nurse rude? Maybe I am frail and too ill - I couldn’t even tell?”.
"I so admire you, never taking a penny from anyone, never needing anything from anyone. never asking too much of anyone. I want to be like you. you're the ideal women" he winks, with a grin, instantly covering the serious nature of his words, and she laughs, patting his hand "you old fool! how's that wife of yours?" and the discussion moves on, her heart flutters with warmth, yet the serous edge to the conversations sets in stone her mindset- I only have worth if I am needless and don't ask too much. I must be independent, I do like being independent after all... He says it jokingly sometimes, his words carving into stone her thoughts and perceptions, confusing her reality and her boundaries “who needs food, when I have you!” he would joke with a glint in his eyes, subtly pointing out that caring for her would lead him to starve from quitting his job - slowly convincing her that a care home isnt for her anymore - even though its all she ever wanted, and still is. “I’m only kidding, I have a nest egg that would be fine!”. Then her smile would waver “would caring for me, really mean he has to break into his life savings? Waste them all on me? I’m such a burden I cannot allow that to happen! Not me! I’m independent! Ill pay my way like I always have if I need. He’ll not suffer a moment for me”.
Her condition worsens and she is not discharged, her world is now one of hospital cubicles, sterile air, light blue cotton blankets, and balloons tied to the end of her bed, wires and tubes and beeping machines keeping her awake at night. She feels trapped and with every beep and buzz, her skin spikes more with alarm…. “It is happening… I’m dy1ng. I’m not ready, I want to be at home when its my time, in my bed, my home …” and the tears seep, hastily wiped away to avoid being seen.
Her son in law smiles sadly at her, jaw clenches, and takes her hand, clammy and cool in his, and he looks at her deeply, “You’re my priority, I want you to know. I am going to quit my job on Monday, I have a small amount of savings that I'll break into, my wife will not be best pleased but she never is… you're my priority. If you want, I’ll look after you?” and after years of independence and feeling like a burden, and being subtly manipulated to think that care homes would be the worse idea, and that him quitting his job would up end his entire life just for a few months of care...
she makes her decision, unprompted it seems.
She wants to d1e in her bed - she would prefer at home, but if need be, a care home, in her bed - but that would mean her being a burden and destroying her son in laws life by making him care for her, because clearly - care home is out of the question - hes right, after all, those paid carers don't love me...not like he does. “I’ll look after him, put him in my will, from the money saved for not being cared for, I’ll leave him my house he so adores – he’d look after it when no one else would, just like he looked after me… maybe then, he’ll forgive me for not letting him care for me.” she signs the dotted line, and not long later its her turn.
Her turn to d1e.
She’s transferred to a special unit, terror holding her rigid, far away from home, even further from the comfort of her cosy bed at home where she wanted to take her last breath. She chats to the doctors, and puts on a face, desperate to not be a burden, who all have compassion and believe that she is of sound mind and not coerced, and she holds the lethal injection in her hands, its lighter than she expected, yet the weight, sunk her deeper into despair, and with shaking fear, she injects herself, wondering if it would be quick? Or slow? And with time, she falls asleep in a strangers too-firm bed, her eyelids fluttering shut.
Her son in law holds her cooling hand, and when the machines beep to signal her end, he sniffles, his jaw finally relaxes. She was his priority – And now she had gone - he got exactly what he wanted – he deserved it after his support over the years – “just in the nick of time too” he muses, “my wife just left me, and now I have a place to live!” he thinks to himself, straightening up to stand, standing taller than he has in years. It all worked out. And no one suspects a thing.
It wasn’t his idea, and he didn’t coerce her - and yet he absolutely did. Its too subtle to judge . No doctors and no judge could ever detect the way he had manipulated her for months before her request for Assisted D3ath – and they certainly couldn’t without combing each conversation for months – certainly not in the small of window of time they’re expected to judge such a huge aspect of playing god. The only effective safeguard against coercion of the vulnerable into Assisted Su1cide is if Assisted Su1cide remains illegal – because until it is effectively safe guarded, its just another excuse to murd3r.
Story 2
Tilly is not terminal, but very depressed. She lives in poverty. She can’t afford to eat her special d1et needed to keep her digestion and health issues from given her huge pain.
Outside support is shunned and impossible to access and she has no family or friends to help. she’s alone, and has nothing good to say about herself, and feels like a huge burden. She has been abused in the past. There is no support and she doesn’t feel safe to leave her shared flat.
It’s mouldy and small and she’s often sick, from the spores, she suspects. She cannot work, and no jobs lets her work for long before fireing her. She cannot afford to buy work clothes, let alone get to work but she can’t access support to access anything either-paperwork or otherwise.
Her benefits were cancelled because she managed to turn up to her assessment at the help of one time support worker, who did their job and then cut all contact. Leaving her desperate and alone.
She can only afford to eat 400 calories a day and so that’s what she eats .she usually like clean spaces but her living space is messy; because she is too disabled to clean up or have life sk1lls to care for herself. Society has let her down time and time again.
She is desperate and alone and desperate to live and for the pain that ravages her mind body and soul, to end.
This bill isn’t about people like Tilly yet – but in 10 years time, the bill could well target people just like Tilly.
Imagine Tilly was in a car crash, woken from a coma and suddenly a life time of negligence and abuse and feeling like a burden catches up with her, and even though her recovery is good, she doesn’t feel safe enough in this world, for her needs to be met without poverty – her consent would be coerced to avoid being a burden and suffering when society could enable her to live and maybe even be happier...
Imagine now Tilly is terminally ill from the crash, and even though there’s a glimmer of hope for a treatment, that she could start immediately, it cost too much money for the treatment for remission, and so she feels her only choice is to consent to assisted d13ing?
Imagine now, the car crash leaves her terminally ill and a life time of self hatred and misery and feeling isolated with burden leads her to consent, d13ing early and in hospital or hospice, when other wise, she would have asked for support to maybe tick a few things off of her bucket list before he natural passing, from access to a charity?
Imagine she consented to assisted d1eing because its too burdensome to stay and she cant afford the treatment to live? Imagine now, that it is 10 years time, Tilly never got sick and never got in a car crash, instead Imagine now that Tilly was never terminally ill and imagine her story takes place years after the proposed bill has been instated and also adjusted, to fit the widening bill that many MPs and communities are calling for (to include inescapable suffering like depression for example). She is still depressed and nothing in her life has changed, she still lives in poverty but now her living situation is so desperate and full of inescapable misery, and she is desperate for the pain to end – and even more desperate for relief and to actually LIVE... with the widening of bill that many MPS and charities are advocating for, she is eligible to d1e, at the hands of her mental health issues, even though she doesn’t want to d1e, she wants more than anything to live, and would be happier going naturally, but doesn’t want to be a burden and she doesn’t want to suffer, because society is intent on forcing her into a spiral of suffering...
One day, she gets an email
“You’re eligible”
And after hours of reading to make sense of the email, her eyes light up. Finally. Hope.
I’ll never travel to my favourite places and countries like I wanted . I’ll never do that art exhibition or visit that temple. I’ll never live abroad. I wont be able to tick those little lovely things off of my bucket list. I wont go to the theatre or sing on stage. I wont ever see a sunrise, or watch a sunset. I can’t even go to my local park. I can’t even eat. I can’t even clean. I am barely even surviving… so what’s the point? It least this way I have agency because I don’t right now. It’s my choice. My signify. I deserve that at least.
She signs up
“It’s my choice. Please understand” she shares on her social media.
Everyone’s devastated to see her go.
But go, she does. Because what choice does she have, really?
- Now, in this reality 10 years from now where the bill was widened to include suffering like hers - because Tilly is not supported to live and survive, let alone be happy, she is now allowed to k1ll herself, through this new updated bill, that provides d3ath for those with inescapable suffering – depression and Trauma and mental health issues. This, in todays reality, is not yet a prospect, but it is being advocated for and if the UK is following in the footsteps of other nations who also accepted the bill, we are not that far away from the bill widening to include people like Tilly – people like my brother, people like me - who have every hope of being saved with a life that is liveable – if society wanted to save people like us, that is.
This is reality in many countries – including Canada and Belgium for example – it started as a way to give respectful d3ath to those who are terminal – and it was widened to include inescapable suffering – which is all too easy to cause as a societal failure to support. Which basically means – our suffering, while being eligible for a future bill of this kind, IS also curable AND inescapable, if only we were prioritised to LIVE, like our human rights dream of.
Either way, Tilly is human and deserved human rights- she deserved that agency and dignity at the very least, and yet it’s an agency and dignity could have offered her if it only listened to disabled advocates and made active changes to societal and public misunderstandings and access.
This is why society coerces consent. It was never Tilly’s choice, because had she been given the right support she would never even have considered assisted dy1ng in the first place. And the answer to lack of support for disabled people is not “let’s support you to d1e” it should be “let’s support you to live”
What’s stopping assisted dy1ng being offered to perfectly healthy disabled people who are vulnerable and easily coerced, in the right circumstances? if d3ath is the only way out of a societally born poverty, discrimination and hate crime, that should be societies sign that we must make life liveable.
The guidelines for the new assisted d13ing measure detail the following for eligibility:
Part 7 First doctor's assessment (coordinating doctor)
The coordinating doctor must, as soon as reasonably practicable after a first declaration is made by a person, carry out the first assessment.
"The first assessment" is an assessment to ascertain whether, in the opinion of the coordinating doctor, the person -
is terminally ill,
has capacity to make the decision to end their own life, (c)
was aged 18 or over at the time the first declaration was made,
(d)
is ordinarily resident in England and Wales and has been so resident for at least 12 months ending with the date of the first declaration,
is registered as a patient with a general medical practice in England or Wales,
has a clear, settled and informed wish to end their own life, and (g)
made the first declaration voluntarily and has not been coerced or pressured by any other person into making it.
Coercion isn’t as clear cut.
There is no effective or viable safeguard against someone being approved because they feel they are a burden. No safe guarding for those approved who may have life changes after 6 months. It’s Appalling.
Coercion can be born from Society and daily stigma . It can be born not from people but from treatment. If we are treated and expected to live below the baseline of what is humane and expected to Fight for scraps of survival and then taught we are burdens, how is that anything but coercion? How is a doctor to know the person is not coerced without investigating the matter thoroughly? No doctor has time for that. I and many advocates fear that there is not enough time given to fully understand the hidden and expansive complications of the proposed Bill-and that societal ableism will also influence the MPs in their decision, because it is so ingrained in society-even good people who mean well, may also be ableist. It’s taught to us, as simply as our desire to live in ingrained into us to fight for our survival – that disabled lives are not worth saving or supporting.
Prime Minister Keir Starmer has allowed a free vote. Disability advocates like myself are pleading with all MPs to vote against the Bill and instead focus on improving access to services, instead of assuming that an early d3ath is the only way to provide dignity at the end of life.
safeguarding against abuse, proper scrutiny of the Bill and fixing services, including palliative care, so that terminally ill people have a genuine choice at the end of life, is imperative. What’s to say, that we pass this bill and we don’t follow in canadas maid footsteps-next voting in allowance to end other types of endless suffering? Like Tilly’s suffering, for example?
Countless stories and cautionary tales told from warring ghosts share evidence on a global scale- that initial good intentions to provide choice at the end of life care ends up with disabled people without terminal illnesses being pushed to an early d3ath because the support to live with agency, dignity or safety is not accessible or even available.
Besides, for assisted d1eing to be proven to be uncoerced-how? How do you prove that? The abuse of a manipulator is subtle that they paint a pretty picture for their public so no one sees the abuse. Just like the moon shining bright with hope and goodness, only to dark and enraged with shadows on the other side. How is a doctor going to see the dark side of the moon, they are never going to face? It is impossible to put strong enough safeguards in place to prevent coercion and feeling that we have become a burden on our families and the state. If we are taught we are a burden- which we are - of course we are coerced into thinking we may as well end early even if they’d feel more peaceful going when was natural-whereas that extra time to go when natural could also provide new hope for improved access and end of life care. Maybe even remission or misdiagnosis. Who knows. But if the patient is otherwise willing to go when is natural, and they only consider ending early because of outside sources that have taught them their own opinions for years and years- how can we trust and safe guard that this opinion and choice to end early is really theirs?
This bill is a danger to disabled people’s human rights. Disabled people already feel devalued and we lack support to live life with dignity and have control and choice over our own lives.
That there are many MPs who wish to widen the bill to include something as subjective as ‘incurable suffering’ is absolutely terrifying. Give us dignity in life and allow us choice and control over our lives.
That said I must acknowledge the lived experience of pain, suffering and distress on both sides of this debate - the depression and suffering and the pain is horrific especially when you know all will soon be over anyway. As someone who’s been told I may d1e from my diseases and have come close to d3ath-I also chose to run far away as quickly as I could - I was supported to and have never been made to Feel like a burden which is frankly rare for other disabled people in my position.
I don’t know a other disabled person with a story, like mine, where they are so disabled, so sick, and in so much agony while also facing the possibility of terminal care - while also being happy and accepting and surrounded by support.
I understand the need and right for dignity in d3ath and choice and agency. I just don’t trust society not to force or coerce or in force that decision with its mistreatment. I am deeply concerned at the far-reaching implications of this bill both for individuals and society as a whole. I worry that - even if amendments were made for improved safe guarding and end of life care with dignity - that one day, they won’t just come for terminal illnesses but disabled people too. this bill would further devalue disabled lives and undermine their very right to life.
What can you do?
Share your thoughts with your mp in a letter. There are many charities such as disabled people against cuts, which provide templates and supports to share far and wide.
You could make short videos and share your story to raise awareness if you feel safe to.
You could reach out to charities and learn from as many perspectives as possible: your perspective may change-and that’s okay.
You ever looked up at the sky on a clear blue day, the sun on one horizon and the moon on the other? Me too!
Don’t forget the sides of the moon-dark and light- and the truth of the blazed sun too; society is capable Of change-we must keep fighting for it.
We advocates are the suns of the earth, shining bright, and sharing light and insights-we are the weapon of choice to fight against society’s secret horrors-and with time, we will win. As true as the sun lights up the sky, we will win the battle, with every new person who has had their perceptions blinded by a new truth-their shadow moon perspective, enlightened by the truth of the sun. Every person is a world changed. Every change, impacts the world, somehow, somewhere-so never give up.
Never give up.
Peace x