It's almost like losing a child

[trouble]

I would like you to go read Ivan Cameron and the Meaning of His Life right now, because it is beautiful and wonderful and says so many things that I wish I could. And also because it is full of pain and despair.

It is very long. Here's a few excerpts:

It is true that the British public had, through officially released family photographs and Cameron’s own very open comments, known more about Ivan than would be normal for a young child of a political figure. Yet if the Tory leader’s exposure of his son was part of a campaign, it was a campaign about something much more important than politics. The message was that he and his wife were not ashamed or embarrassed to have a child with such profound disabilities - and, by extension, neither should anyone else be, in the same situation.

This is so true for me. I talk about Don as much as I do, way more than other people think is normal, to remind people that PWD exist and take up space and deserve to be here and are loved. A lot of people have told me over the past 12 months that they've been affected by this, have started to look around their homes and sort out if Don could come visit (often, no) or started revising their internal opinions of wheelchairs. I can understand why Ivan Cameron's father made so much about his son's life public, for the same reasons I have been relentlessly cheerful about Don's wheelchair in public spaces. I have the energy for this fight, and I think it's my responsibility to wage it.

But here's the part that I think will break your heart, as it did mine:

Nine-year-old Daisy entered hospital in 2005 with a tooth infection, which turned septic. The hospital failed to supply the most basic medical care, giving Daisy neither food nor liquid in sufficient quantities. When she began gasping for breath the hospital told the parents that she would be transferred to intensive care, but this never happened.

It turned out that this was not an accident, but deliberate, and an official report on the case is being prepared by the ombudsman. As Daisy’s mother, Amanda Healy, told me: “The staff later admitted to us that they had ‘misjudged her quality of life’.” In other words, they had acted under the belief that Daisy - who loved and was loved by her parents and who, in Amanda’s words, “adored just waking up in the morning” - had a life not worth living and therefore not worth fighting to preserve.

One member of the hospital’s staff had said to Amanda, when she complained about Daisy’s lack of treatment: “People like you should realise that children like these are going to die sooner or later.” The remark that most shocked Amanda came from a doctor who was actually trying to be sympathetic, after Daisy had eventually died of a pulmonary haemorrhage: “It must be awful; it’s almost like losing a child.” It was the charity Mencap that put me in touch with Amanda Healy: hers is one of a number of similar cases involving what it calls “death by indifference” that it is pursuing on behalf of the bereaved parents.

"It's almost like losing a child."

My broken heart, my broken heart.

Comments

[hysteriachan.livejournal.com]

"It's almost like losing a child."

*speechless*

[troubleinchina.livejournal.com]

And then it's carried through when parents murder their children who have disabilities. "Well," goes the argument, "it's probably better this way."

[belledame222.livejournal.com]

uh, yeah. *

[zingerella.livejournal.com]

“People like you should realise that children like these are going to die sooner or later.”

We're all going to die, sooner or later. We're all marching, wheeling, crawling, or being dragged inexorably towards the grave.

So what? We live, right now, and we want the best possible lives for ourselves and those with whom we share our lives. And I, who can walk, run, dance, write, edit, sing, and talk your ear off if you let me, cannot tell you whose desire to live is strongest, or who is more deserving of care and attention in life.

Because we all need care and attention. Where we differ is in the amount and kind of care that we need. And we all deserve it. And we all deserve to have as many days as we can wrestle away from the Fates.

What people like that medical professional need to know is that everyone is going to die someday, and until that day, everyone's life has value and deserves to be valued.

[troubleinchina.livejournal.com]

I know, I just don't understand. I'm going to die, but somehow this wouldn't be justification to withold food.

[shewhohashope.livejournal.com]

Holy shit.

I don't know why I'm surprised, doctors are just as dumb as regular people. Or at least medical studnets are.

[elanor-x.livejournal.com]

A wonderful article.

[peaseblossom.livejournal.com]

You are absolutely right: it did break my heart.

[furikku.livejournal.com]

Every time I read something like this I am flabbergasted because how do people think like that?! It makes negative sense to me- how do you look at anyone even vaguely human-shaped and think, "This does not actually count as human, so regular acting-toward-human behaviour shall not be used."

*Flails*

[troubleinchina.livejournal.com]

Because they don't get called on it until something truly tragic happens.

It's really an extension of the same attitudes of people who tell me I'm "brave" for "dealing with" Don.

[furikku.livejournal.com]

IDK, I can see the dumbshittery angle of "Well, she's dealing with something that's Outside the Norm, which has got to be difficult because you can't run on autopilot, so obviously it is brave!"

I cannot fathom letting someone in your charge die a slow and painful death like that.

I think I have more faith in humanity than is absolutely warranted, at least judging from some of the stuff I've read lately. D:

[troubleinchina.livejournal.com]

But, see, it's doing her and her family a favour. And doctors know everything! [This isn't fair - I've worked with good doctors. But the ones who are asshats are the ones that stick out in my head.]

[furikku.livejournal.com]

Yeah, I am familiar with the fact that there is a percentage of the medical population under the impression that "doctor" and "God" are synonymous. :/

It's just... "letting her slowly die to death" and "doing her and her family a favour" are so unlinked that the idea that they COULD be linked in someone mind terrifies me. It's like, I could intellectually GRASP the idea that someone decided it was time for, say, a "mercy killing," as repulsive and horrible as the idea is; but that death by active neglect... it seems even worse, because it's an unwillingness to even consider that this person was suffering horribly because you were not doing your job.

It's a way of thinking that just seems inhuman, along with plain old inhumane (and unethical, and reprehensible, and very many other adjectives).

[belledame222.livejournal.com]

agree. saying fuckheaded things is one thing. this is pure evil, it seems to me. I can't wrap my head around it tbh.

[belledame222.livejournal.com]

not that i disagree with the sentiment of wanting to break a chair across the head of the "almost" person who made the "almost" comment

[tevriel.livejournal.com]

... Isn't Don your husband?

Man, I thought the people who remark actively on Chas and Dean being wonderful/amazing/deserving of sainthood because they take care of me were failing to understand the concept of "love" sufficiently.

[troubleinchina.livejournal.com]

*nodnod* And he's hot, have I mentioned? ;)

You wouldn't believe the responses when people find out he had a disability (and I even knew about it!) before we got involved. That makes me DOUBLE BRAVE. *sigh*

[tevriel.livejournal.com]

Heh. I've only seen photos of him, remember. ;) I have difficulty perceiving hotness in people I haven't seen alive, so to speak, imbued with pulse and breath and motion, and also communicating, etc.

Clearly my lack of lust for him is a sign of ablist prejudice. No, really, looking at recent people I've thought were really hot, probably it's the fact that he operates with Earth logic, doesn't fight space aliens or the undead/isn't a devoted butler/isn't a kind of brilliant Ph.D. with a hot Scottish accent. (That I know of, on the last one. Seriously, though, offered a choice between my history lecturer and David Tennant I'd find it hard to choose. IT'S SO INAPPROPRIATE.)

So patently he's not my type.

[tevriel.livejournal.com]

That... felt like getting punched in the chest.

Almost?

[randomposting.livejournal.com]

Oh my God.

[dinpik.livejournal.com]

...

Can I kill that doctor now?

[arabidmouse.livejournal.com]

How do you live your life after losing someone so important to you through cold, calculated indifference? My heart goes out to Daisy's parents. The way the hospital staff just brushed it off is so inhuman. I can't understand their complete lack of compassion on any level.

When I was in kindergarten there was a boy - I don't remember his name, but I remember his smile. He had a disability, I'm not sure what (probably because I didn't care), and I remember that close to the end of our school year he became very ill. His aide came to class, however, and explained that he was ill. I seem to remember something about his heart. We all gathered around the aide (unfortunately I can't remember her name either) and hugged her and told her that we'd like to visit him. We couldn't, so we made cards for him and talked about him at recess, hoping that he would get better.

It's 21 years later and I still wonder what happened to him.

My point is that I can't fathom hearing anything as callous and cold as "...it's almost like losing a child." in the above context and not breaking a chair across the arrogant fucker's face. (Pardon my use of language.)

To see that kind of attitude towards disability makes me throw up a little in my mouth. Crash, due to his hemophilia, is considered disabled. My mother, with her MS, is considered disabled. To be told by anyone that the people I love with all my heart are somehow less deserving of medical care (or just love on any level) will meet my righteous, burning fury.

[georgiaclaire.livejournal.com]

Dude, my girlfriend is one diopter away from being considered legally blind. If someone in any way suggested she was less than human I would laugh in their faces and then break their kneecaps.

I'm not going to claim there aren't some people who are so significantly disabled, have such poor qualities of life, that death isn't a way out. But to claim that's true of many or most people with so called disabilities? Fuck off.