Wednesday, June 19, 2013

What I'm doing here on this blog.

My Agenda, for those who might have missed it.

I have been writing this blog for about two years now.  I didn’t know what to expect when I started, but I knew I wanted to find my voice.

In addition, I wanted to document some of the things I was reading in the news.  I wanted a record of what I was reading.  It’s too easy for critics to be dismissive, both of me, and of the disability community in general.

In short, we disabled are treated in a patronizing fashion. We worry about being denied care: “Oh, that will never happen.”  That has already happened; we have seen instances of it in the news.  I have read about it in the books I have used as research.

As well, we are assured we will be given a choice.  In a society where the context is one of presumed consent, the ignoring of informed consent and silent DNR orders, this is laughable.  If you don’t know what is happening, how will you combat it?

To say nothing of one doctor I read about who said, “I don’t need to follow written directives” in reference to a patient she presumed wanted death.  If we have a written care plan, and that is enforceable by law the way I understand it from people who know better than I, then how is it that a doctor can be so arrogant as to ignore those written rules when it suits their agenda?

I had another person tell me I had a good theoretical knowledge, but questioned my writing on the basis of practical knowledge.  This person said that to me, a person of invisible disabilities times four.  Diabetes, heart condition, cataracts due to diabetes (I am presuming here) and a learning disability.

I was also born premature and faced failure to thrive.  That last was before doctors recognized that as a thing.

So yes, in my lived experience, I have had quite a bit of time to observe the theoretical versus the real.  The difference I suppose between me and some others is that I am writing about it as a way to call people on their disconnect between theory and actuality.

So here are some things to keep in mind:

First, I don’t care if people are offended here.  Good.  I remember reading about the controversy wherein people thought that those who were pro – life should be segregated and silenced.  Why?  

What is it about our position that is so threatening to others?

Second, I have my own voice and a right to it.  In writing this voice out here, I am also – although I am not presuming this – speaking for others who think the same but either don’t feel confident enough to write, or haven’t found their voices – yet.  The writing here has to resonate with others, because I do have a regular readership.  I have also had numerous comments posted wherein people tell me that they wanted to say what I said, but hadn’t.

Third, I am writing what I notice.  I also write from a real world perspective.  Yes there is theory, but the newspaper articles serve the purpose of showing that these outrages we click our tongues about actually happened:  they are not as one euthanasia enthusiast said to me, myths.

Fourth, I am writing from the margins.  Having a disability is marginalizing.  I have experienced marginalization, and this has been economic, social, political and medical. 

Here’s where it’s not theory. My stepfather was euthanized in front of me.  My mother was abused before she died of cancer in 2006.  I was misdiagnosed in 1992.  After that, I turned out that what I had was classical in its presentation, and the doctors at the emergency room missed it – three times.

Later, after this, in about 2007 I was diagnosed with a heart condition.  That was positively identified.  When I had an arrhythmic attack, I went to the emergency of the hospital where I was diagnosed.

The doctor there accused me of using crystal meth.  I wouldn’t know what that was if someone handed it to me.  The doctor, by the way, did not do any other testing than hook me up to a heart monitor.

Remember, this was in the same hospital that diagnosed me initially.

There was no other testing done.

So there are some real world experiences I have had.  There are others, but space does not permit me to write about them here.

My focus in this blog is on

Book reviews: of books I find interesting or applicable to my project of speaking truth to power, as a type.

What I call news roundups.  I will summarize different news articles sometimes in full, to highlight an issue.  This also has the impact of denying euthanasia enthusiasts the ability to silence me by denial of reality to suit their own agenda.

Critical commentary on the passing scene as I find it.  I may ask uncomfortable or even potentially offensive questions.  Tough.  Human lives are at stake.  Devalued human lives are at stake.

So if you are easily offended because I am pro life, too bad.  I’m being up front here, and I have my reasons.  I’d ask one question though:

Why is it that you are threatened by me, a lone social critic, who is simply commenting on the passing scene?

What is it about my position that offends you?

I think we need to start talking back to those who are pro death.  We need to start calling them on what they think they are doing.  The reason is that we as disabled people, have been marginalized and silenced to suit their own ends.  They pay lip service to safeguards and debate, but really, they want their agenda – not disabled people’s – pushed forward to the exclusion of everything else.

This is why I keep my evidence real-world.  If they say that people will not be killed by mistake, I will point out it happened around 1988 in Holland.  If they say that only people who can ask for it will get it, I will point out the destruction of newborns in the Groningen protocol.  If they say that people will be respected in their wishes, I point to silent DNRs, and slow code blues and silent orders given despite the patients or the family’s wishes. If they say informed consent, I point to my experience with the emergency room doctor. If they say written orders, I point to the case in which a Quebec man was killed and the doctor said in the inquest that written orders didn’t matter.

For every attempted reassurance of safeguards pushed forward, I will counter with real world examples where those safeguards have been over-ridden.  So safeguards are a theoretical sop to the dying and disabled.

Think of it like this: it is said that those who do not want death do not have to have it.

Here’s the problem: this position assumes that death is provided as a default, rather than an option.  

And what if other options are...just...not ...discussed?  How would I know?  I am trusting the experts to follow informed consent.

So if I don’t want it, doctors or nurses could simply enforce DNR orders on me without my knowing.

Who wins?

Certainly not me; I’d be dead.

So this is the focus of my blog.  My agenda is to get people to realize that the beautiful theory of aid in dying is overridden by the brutal facts of abuse, and economics.

I am a big believer in context.  The context of the recent Supreme Court of Canada decision is that we are living in a nation where our medical system is apparently broke.  We also read in the papers about disabled people being attacked , and we read about people being denied medicine or care for economic reasons.

It’s only a matter of time before the default response is to offer death without discussion , or even 
discussion of any options.

That is the reality, and the context of our life now that ‘euthanasia’ has been ‘legalized’.

To say otherwise is to be after a certain measure, socially psychotic.

Here is the most basic question we can think of in terms of suffering: how little suffering to you have to experience to be eligible for death?  How little suffering does someone else have to see in you to demand death on your behalf?  Given that we have legalized medical death looming in Canada, we will find that the only suffering we need to endure is to be born.  Suffering is presumed after we arrive.

Since I started this blog a couple of years ago, it has drawn over ten thousand hits.  This astonishes me, because I am writing my opinions out, albeit those opinions are usually backed with real world examples from the papers or the news.  I didn’t expect to get a regular readership, so it’s nice to see.

I try to post once or twice a week.  I try to post on Tuesdays and Wednesdays, or on Fridays and Saturdays.  This is not a hard and fast rule, however.

The fact that I am posting on a regular basis tells me I found my voice, and that I have something to say.  That has in turn helped me find my voice and become more confident in what I say.
I am also aware of how ‘complex’ the issue can be made.  But really, it is simple: do you, as a human being, want a doctor, nurse or family member, or bureaucrat telling you or someone else that you are a useless eater and it’s time for you to die?  Remember, we have seen this in history, and that is why we need to stop it now.

That is why I have written all these things.  Someone has to speak up, and there has to be a record of resistance to the notion that disabled lives are either not significant, not worth living, or that disabled people are simply a source of spare parts.  Those things are being said and assumed; that is the reality.

That presumption and arrogance on the part of the abled needs to be addressed, and I hope I am addressing part of it here.

If you’re a pro eut and you’re offended, good.  Sorry if I’ve caused you suffering, but you have options. Myself and other disabled people have options denied to us or hidden from us.  You have the choice because you have the social power.

It’s time for us, the disabled, to take our voices and take some of that power back.

As one group says, “Nothing about us, without us.”

Amen to that. I agree completely.

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