Assist me to live, not to die.

Today (Friday) the UK Parliament are voting on the ‘Terminally Ill Adults (End of Life) Bill’, or simply put, the Assisted Suicide Bill.

I’ve written an additional blog this month to highlight that legalising Assisted Suicide is dangerous for some communities.

Trigger Warning: I write from the heart & frankly here. Some of you will hate what I’ve written. Some of you will agree. Some of you will understand. In any case, I’m warning you but not apologising.

Alt Text: A selfie of a white-skinned middle-aged disabled woman wearing pink/brown round glasses, a black top & a red velvet Bolero jacket. She is smiling. She is in her bedroom, sitting in front of a green plant, a window with white Venetian blinds & white furniture.

Today MP’s have a free vote, in the UK Parliament, which means that they can vote with their conscience rather than following party lines. Apparently, for a lot of MP’s, the Assisted Suicide debate has generated the highest volume of interactions & correspondance that they’ve ever received on a single issue. The majority of the MP’s are first-time MP’s because of Labour’s sweeping majority from the summer’s election. They’ve only had 17 days to read, digest, interrogate, consult & do further research on whether the State can legally help their citizens to die. Make of that what you will.

Many of my disabled friends are protesting outside Parliament today whilst others, like myself, will be active on social media, presenting the argument that this Bill gives licence to terminate the lives of many disabled people & those living with conditions, who can, & who are entitled to,
a full life if they have the right support in place.

I can’t help thinking that some MP’s who are voting yes have done it to save money for the NHS & Social Care. They’ve taken the easy way out. Some may have voted to ‘toe the party line’ &
to put their political career before their constituents.

The Bill is being presented as having a limited scope & many safeguards, including from coercion. But that’s precisely what the Bill doesn’t have. I urge you to read the counter arguments set out by Paralympian Tanni Grey-Thompson, actors Liz Carr & Lisa Hammond, Guardian journalist Frances Ryan, Disabled People Against the Cuts, Not Dead Yet, Disability
Rights UK, Scope & Inclusion London. Over 130 of the UK’s DPO’s (Disabled People’s Organisations, led for & by disabled people) are urging MP’s to vote against the Bill. It’s much more than ‘just a handful of disabled activists’ that are against the Bill, which has been implied in some quarters.

I haven’t given a summary of what they’ve said because they say it much more eloquently than I do.

So why don’t we trust the Bill? Why are we so against legalising Assisted Dying?

Here’s my personal take on it.

I’m a disabled person who has an impairment that can be terminal (in fact, I was given three days to live at birth – I’m now 53). Now I live with a cancer diagnosis which could also be
terminal (please God that it never returns). You’d think that I’d be backing the Bill. WRONG! I’m actually terrified of the Bill becoming law. I feel sick when I think about it. I cried writing this.

I love life. I’m willing to do what it takes to live my life out to the (bitter) end. I don’t want to die at all. I don’t understand why people have to die.
I think I have this view because my mum died when I was 16 & she said repeatedly that she didn’t want to die. The next close person to me that died was a university friend who passed
from HIV-related illnesses. He didn’t want to die either. Seeing both my mum & my friend Paul cut down in their prime & wrenched away from me broke my heart forever.

Assisted Suicide/Assisted Dying Bills tend to start with a limited remit but the limited remit doesn’t stay that way for very long. In Belgium, the first disabled person to be euthanised was a
disabled child. Yes. A child. In Canada, where they have MAID (appearing as gentle, helpful title but the acronym actually means ‘Medical Assistance in Dying’), a disabled woman complained to her local authority that it was taking too long for them to agree to put a ramp to her home. She said that she was becoming depressed & hopeless because of this delay – which is entirely understandable. The next call she got was from MAID asking her if she wants
a place on the Assisted Dying programme. That isn’t understandable at all. See how quickly these things escalate?

If you watched Liz Carr’s recent BBC documentary ‘Better Off Dead?’ you would have watched a terrifying woman from MAID being interviewed by Liz & expressing great delight & pride in her job. Her job was to assess & then put people on an assisted dying path. She terrified me because it was obvious that she had some kind of ‘God / Messiah’ type complex. It seemed like she was ticking the ‘Yes I’d like to die’ box before her clients had started speaking. She was also disabled herself.

I’ve experienced coercion before: from a (thankfully now ex) family member. That person put pressure on a loved family member to give them money, change legal documents, etc. My
loved one was very ill & vulnerable at the time. I’ve had two previous PA’s who were stealing money, jewellery & other items from me, but whilst it was going on, convincing me that I was
misplacing or losing items. It was orchestrated to send me a bit crazy. It’s surprising how easy you can get caught up in coercion. I’ve never thought of myself as vulnerable, in fact, I think of
myself as quite smart but it happened to me. Coercion is easy if the circumstances are ripe for it.

Then there’s the DNR (Do Not Resuscitate) stuff that gave me the idea of starting The Musings of Spu blog. To recap, I got diagnosed on the 10th March 2020 with Breast Cancer & my
surgery was planned for two weeks later. On 13th March (yes, it was a Friday, da, da, DAAAA!) my Breast Cancer nurse called me to say that I should stay home for the foreseeable future because a global pandemic had arrived & that my surgery was cancelled with no future date given.

When I protested & said that they should do the surgery without a ventilator anyway (I was to have a ventilator on standby because I have restricted lung capacity), I was refused for the following reasons:

A) There was a lack of shortage of ventilators in the UK
B) It was too dangerous for me to be taken into hospital because I was high-risk for catching COVID-19. And if I caught it, I wouldn’t be offered a ventilator because I was on a list of people who were deemed unlikely to survive COVID-19. That’s how I found
out that I had a DNR placed on me without my knowledge.

Regular readers will know that I contracted COVID-19 three times & I wasn’t even hospitalised.

The judgement is alarmingly similar to me being given three days to live at birth. And totally incorrect.

Then there’s the question of me becoming a ‘burden.’ You hear it all the time don’t you, especially in the Assisted Suicide debate. “I don’t want to become a burden to my family.” But
no one has to be a burden with the appropriate care support, access equipment & pain relief in place. I can enjoy an independent life because I have care support, access equipment & a treatment programme. But it costs the Local Authority money (it costs me money too, I pay my taxes, & even if I didn’t, being in a civilised society means that you care & support everyone in it!) Also I have to go through difficult & demeaning tests continuously in my life to qualify for
care, equipment, etc, even though I’ll never get better.

Then there’s the quality of life issue. At my biopsy in February 2020, I was taken into a room afterwards & a (different to the phone call) Breast Cancer nurse started quizzing me about what I intended to do if it did turn out to be cancer. At first, I was really, really confused. I went into a
long speech about the fact that I was going to take all the treatments offered to me because I loved life & my partner, I loved my friends & family, I have a meaningful job & other
responsibilities, etc. As I was talking, it slowly dawned on me that I was having to justify my life to get treatment. It became clearer to me when she said, “You know, some people don’t bother with the treatment, because, you know, it’s all too much for them.” She trailed off when she saw
my facial expression. I left her in no doubt that I wasn’t going to refuse treatment. But the thing that plays on my mind is does every Breast Cancer patient have the same type of
conversation…?

Apart from fearing that I was going to die in the pandemic, I was also afraid of being taken away from my partner & put in residential care because the Coronavirus Act swept away all my
entitlements under the Social Care Act & the Mental Health Act. The highest number of people that died in the UK from COVID-19 were disabled people. Remember the ‘ring of protection’
around care / residential homes that didn’t actually exist? And you ask me why I’m afraid of MP’s voting for the Assisted Dying Bill!

I believe that voting doesn’t come down to conscience for some MP’s, it’s about money, business & ideology.

It comes to me as no surprise that the life-extending drug for some Breast Cancer patients, Enhertu, was rejected for use in England for the second time by NICE. Neither am I surprised
that there has been no real investment in effective pain management & palliative care medication over decades. There isn’t any investment in hospices either, in fact, most of them
are just about hanging on through generous donations from the public. People can’t have a “good death” because the UK hasn’t given people the means to have a peaceful & pain-free
death.

I admired the current Health Secretary for coming out & saying that he won’t be voting for the Bill. He was transparent about the fact that if the UK choses to fund Assisted Suicide, then other areas of the NHS can’t be funded. And there’s your answer to why Enhertu, effective pain management & hospices aren’t funded.

There are MP’s of all parties who have expressed concern that different communities will be disproportionately affected because of their protected characteristics if the Bill gets through. Others have outlined the crisis in palliative care & hospices & won’t back the Bill because they want the investment to go into this kind of end-of-life care.

I’m a bit late to the party on this one, but I’m currently reading Frances Ryan’s ‘Crippled. Austerity & the demonisation of disabled people.’ It’s been one hell of an emotional overload
reading this book against the backdrop of current political messages; the same old troupes about the welfare bill being too costly, many people are lazy hence the drive to get disabled people into work. Rather than acknowledging that some disabled people are too ill to work but they’re equally deserving of a life with dignity though the consistent gaslighting of disabled people, they make disabled people feel guilty & portray them as ‘scroungers’ in public Isn’t that reason enough for me to be scared that if the Bill is voted through, then it won’t be long before I’ll start being coerced into taking the option of Assisted Dying because I’m just too damn expensive for society & too damn lazy to make a meaningful contribution.

At the end of 2015, it was made public that the UN (United Nations) was looking into State-led violations of disabled people’s human rights. It was done privately & confidentially to safeguard the disabled citizens & their families, protecting them as witnesses, & to secure the cooperation of the host country. It turned out that the UN were investigating Britain. In 2018 the UN
declared that the British State was failing in its duties towards its disabled citizens in everything from housing, employment, education & social security.

There has been no attempt by our politicians to address or fully acknowledge the UN’s declaration in 2018, so I’m right to be afraid of what’s going to happen to disabled people if this Bill gets voted in. I regard it as a wider, calculated & targeted plan against disabled people.

There you go, I warned you that I was going to express frank opinions & that you might hate what I’m presenting!

#AssistUsToLive #NotDeadYet #IAmNotABurden #KillTheBillNotMe