You’ve WORKED with disabled people, you cared for your mother or father with dementia or you’ve had depression or some other chronic illness, or been suicidal. I do know how soul destroying that is, but the moment you start on the topic of assisted dying and tell me it is not about me, you just sound like another able-bodied person telling a disabled person how it is going to be. You are probably a decent caring person. I’m not even questioning how much you care, just how much you are listening while you are surviving without having to wonder whether people think so little of you that they would kill you and say they were doing you -and society at large- a service. I’m not accusing you of anything, but when you get into a euthanasia debate with disabled people I don’t care how many other people agree with you, I’m through with you, and you can be very proud you have all those other people on your side but whatever you choose to believe, for what ever reason, this Is Not How We Want To Die.
Any disabled person knows very well what happens. It isn’t just about end of life care, it is about rules and care packages that doom people to care homes if they need 24 hour care and worse, if care is costly. It is something that you cannot understand unless you have been that person on life-support, or have lived all your life knowing your fate was in the hands of others. Not beside someone, or caring for them, which is difficult and heartbreaking, but living your entire life knowing you are only here because someone did NOT give up on you. This Is Not How We Want To Die.
I get tired of people who speak on this topic without considering -and often simply dismissing- what it means to disabled people to hear people discussing our fate so glibly. It’s like people telling you to buck up your ideas and work when you are far too ill or disabled to do so – only a thousand times worse. If you don’t realise our lives are already at risk, that even without euthanasia laws in place there are thousands of people like me dying this way every week, then I’ve wasted my time speaking frankly on many other disability related subjects, because your whole heart is not with us and you are a fair-weather ally. Experiences in your past give you a different opinion on this to me, but I have those kind of experiences too. It hurts me too, especially if I’ve already asked you not to disregard that. But more important than anything else, this is a debate that you should really NOT be having with a disabled person. If you are speaking to us on this topic then you need to realise that for once the this is not about elderly people, or sickness, or about what you would want at the end of your life, but it is about us. This time you are facing us. And This Is Not How We Want To Die.
A friend told me of his struggles to keep his daughter out of a ‘care home’ where they would withdraw her feeding tube and she would die in a matter of days or weeks- not because of organ failure, not because she was suffering, but simply because of cost to the NHS. And that is not an isolated case. Disabled people have to fight not to be euthanized whenever we are sick, whenever we get pneumonia or an infection, whenever we are in ICU. Baroness Jane Campbell has lived a life dedicated to equality for disabled people and was a leading instigator of the Spartacus Report that launched the attack on the Welfare Reform Act and Atos, without which we would already be lost. Yet doctors repeatedly tell this strong, intelligent, determined woman that it is “time she gave up and that due to her breathing difficulties it was “time to go.” And This Is Not How She Wants To Die.
I am so scared of the consequences of appointments such as Mordant’s or of laws and changes in policy regarding euthanasia, that I will not have another operation even if it kills me, that I wouldn’t even have the operation that would have meant we could have children in case it makes me so ill that it could be decided I have no mental capacity. If you knew the things that are happening in modern care homes, perhaps you would understand how I feel. As a less than able bodied person who has been able to do things with their life but laterly has had to deal with the stigma and discrimination against disabled people that has driven so many to suicide world-wide, not only do I feel a failure, I also know this Government can kill me or incarcerate me on a whim. Things are VERY different now than they were ten or twenty years ago. Perhaps they always were for people like me. I have friends who were abused worse than you or I could imagine, whose own parents said they should have put a pillow over my friends face and you say to me, that “Any parent with a child going through all that would eventually have to admit it’s time to let go.” But This Is Not How We Want To Die.
For what it’s worth, I know that as a disabled person my opinion doesn’t really count to most people, and so we need those who will hold on for us and with us, those who hold us as valuable and worthy beings, so that one unknown and uncaring person is not capable of legalising our deaths. Unless your own situation is the same as a disabled person’s, however sick your parent, friend, wife or husband, you do not have the right to discuss this in the presence of those who have already been more directly affected than you will ever be. To give up our right to life on a Governmental whim or the whim of those who worry about Atos and the DWP and feeding their families, who protest and blog yet who will sell us for the mirage that they will then live longer, makes everything else we have fought for together pointless. That’s why petty arguments don’t really matter. I have what is left then that’s it. I really don’t want to get so depressed that I hand them my death on a plate. Because This Is Not How I Want To Die.
So, yes, it is very personal. If you can argue with me on the basis of ‘Right to Die’ as if it is about any of those things above rather than about my Right To Live, then I do not think you really ever saw what I write about my situation or about disability issues. You can go back to work, to your life when you finish this conversation but do you really know what I face? You have seen pictures of me, that is all. STOP it. Because This Is Not How I Want To Die.
This Is Not How We Want To Die