Amelia deserves to live

Amelia is a three-year-old girl who is very sick. If she doesn’t have a kidney transplant, she will probably be dead within a year, perhaps less. Luckily, her parents have health insurance. Luckily, she has a large family who are willing to donate a kidney to save her life, so there’s a good chance one of them will be a match.

Unluckily, her doctors are bigots, as her mother has written about here. Amelia has Wolf–Hirschhorn syndrome, which means she is mentally retarded, among other things. Her doctors have decided her “quality of life” is too low to justify giving her the operation she needs. So they’re going to let her die.

I don’t know if there’s anything you or I can do about this (besides pray), but I think people should know. n the offchance anyone reading this knows anyone who can help Amelia and her family, please contact them. Amelia is a human being. She deserves to live. There is no reason to believe that she is unhappy with her life or doesn’t want to live.

Luckily her parents are good, loving people who will fight for their little girl and I really hope they win.

Amelia is a person. She has a right to live. What is happening to her is so, so wrong.


Investigation says no girl was murdered.

So, in the time between me posting about the little girl allegedly murdered by loggers in Brazil and now, there’s been a report from the investigation and the investigators found no evidence of a little girl being burned to death, but that loggers were illegally on the land belonging to indigenous people.

Thank goodness for that. I can’t remember the last time I’ve been so pleased to be wrong. Obiously the land theft is still a very serious problem, however.


Loggers Murder a Little Girl

This is horrible. Someone just tweeted this link at me. They tied a little girl up and burned her to death.
From the Telegraph:

The child was said to have wandered away from her village, where around 60 members of the Awá tribe live a primitive life in complete isolation from the modern world, and fallen into the hands of the loggers.
Luis Carlos Guajajaras, a local leader from a separate tribe, told a Brazilian news website that they tied to her a tree and set her alight as a warning to other natives, who live in a protected reserve in the north-eastern state of Maranhão .
“She was from another tribe, they live deep in the jungle, and have no contact with the outside world. It would have been the first time she had ever seen white men. We heard that they laughed as they burned her to death,” he said.
Reports of the killing, which was said to have happened in October or November last year, were seconded by the Indigenous Missionary Council (CIMI), a Catholic group which said it had seen footage of her charred remains.
A spokesman for the Brazil’s Indian Affairs Department said the government was urgently investigating the claims.
Huge iron ore deposits and valuable timber have encouraged mining and logging companies to enter the forests of Maranhão despite laws designed to protect the few remaining uncontacted tribes, often leading to violent clashes.
Around 450 tribes people have were murdered in Brazil between 2003 and 2010, according to figures from CIMI.
Survival, a charity for tribal groups, warned that a third of the Awá’s land had already been destroyed and that their nomadic hunter-gatherer lifestyle was being threatened as animals fled in the face of the approaching logging companies.

“And sin, young man, is treating people as things…”
People as things. To the nth degree.
They laughed as they burned her to death.
Eternal rest grant unto her, Oh Lord, and let perpetual light shine on her. May she rest in peace.


The Spartacus Report on Responsible Disability Reform

I should have written a lot more about the subject of disability reform before now, and this post is going to be a quickie, but I hope I shall write something at greter length soon.

The main points:
1. Currently, people who are significantly disabled and/or chronically ill can claim a benefit called Disability Living Allowance. There are different rates available based on how severe your condition(s) are assessed as being.
2. DLA has the lowest fraud rate of any benefit (0.5%) , according to the government’s own figures.
3. DLA is a benefit designed to help with the cost of living with a disability. For example, it might pay for wheelchairs, stairlifts, adapted bathrooms, communication devices, taxis for those who are unable to use public transport, the extra costs of heating for those who need to keep their homes warmer due to illness, incontinence pads and many other things.
4. DLA can be claimed both by people who are too sick to work and live entirely on benefits, and by people who do work (or live on student loans or whatever) who need help with disability costs. A lot of employed DLA claimants say that, ironically, without DLA they would be unable to get the assisstive technology they require to work and would end up costing the state more money.
5. Despite its low fraud rate, the government wants to change it to a different disability benefit called Personal Independence Payment (PIP) and estimates that 20% fewer people would be eligible for it.
6. I claimed DLA (at the lowest rate) in the past. It helped pay for taxis to medical appointments when I was much more ill than I am now and could not use public transport. Partly down to DLA I am now better than I was and off benefits. Once PIP comes in, someone in the situation I was in then would be in big trouble. I was lucky to get DLA without trouble – some people who are very sick, with life-threatening conditions, are still denied it and have to appeal (like Sue Marsh, who has a rare , particularly severe form of Chron’s disease. She wrote about it here.)
7. There are a LOT of things wrong with the PIP proposals (too many to list right now, but they are in the report linked below). The government has also broken its own rules about consultations before planning these changes.8. A document called “The Spartacus report” has been researched and put together by hundreds of disability campaigners accross the country. You can read it here.
9. We all know the economy is a mess. However, even if, for the sake of argument, there is genuinely nothing less important we can cut instead, and it would genuinely be impossible to raise any more tax without making the situation worse (both premises I’m unsure about) the government could at least tell the truth and say “DLA claimants aren’t frauds living in luxury, they’re people claiming money they need. We just can’t afford to give them what they need, which sucks. Sorry.” Also, implementing the changes from DLA to PIP will have significant administrative costs.
10. In my imagined as-close-to-ideal-as-possible-considering-humanity’s-fallen-state world, there would be no need for DLA. Not because disabled people would disappear, or because we’d live in some kind of Randian dystopia where nobody helps anyone but themselves, but because people would SHARE, of their own volition, without the government needing to collect money for a welfare system*. People would just support each other when they needed it, without the need for the complex machinery of the state. However, what’s happening here isn’t a replacement of state support with private charity but the government falsely saying that many people on DLA don’t need any help.

*In this imaginary, not-possible-in-the-forseeable-future world, there would still BE government, but there’d be a lot less of it. Not because OH NOES GUVMINT IS EEEEBIL HOW DARE U SUGGEST THAT I HAV A DUTY TO HELP OTHER PPL!!!!ONEONEONE!!!!ELEVEN!!!!!11111111 but because people would just help each other without needing to be told to. And yes, I do need to think a bit more about how it would work, in practical terms, although I do have ideas which I don’t currently have time to explain. And yes, I do need to help other people more and get better at practising what I preach, but just because I do not live out a principle perfectly doesn’t mean that the principle is wrong.


Silly post is silly

Anyone worried by a silly post I posted earlier (which was up for less than 10 minutes) should not be.


“Hunger only for a taste of justice/ Hunger only for a Word of truth”"


Lyrics below the fold.

Read the rest of this entry »


Family Death

My Nan died. I found at this morning.

She was 83 and went suddenly and peacefully. But she was alone when she died, which is sad. I hope she didn’t realise she was dying. I hope she lost consciousness immediately. Because dying by yourself and knowing you’re dying must be horrible.

I wish I could hug her again.

I don’t know when her funeral is yet.

Payers please. Especially for my dad, who now has no parents. Which is ok because he’s over 50 with a job and kids and everything, but still. Having no parents is sad.

One day it will be him and my mum in the ground and me with no parents. Not a nice thought.

This will be a hard Christmas for my family.


Guilt and Contrition

Guilt and contrition are very different things.

Guilt is anger at oneself for having failed, having lost control in some way or not been as wonderful as one thinks one is/was/has the potential to be.

Contrition is a verydifferent thing and centres on the other person.

At some point I may write of the circumstances that led to my writing these words (words I have long known to be facts, but have viscerally felt the truth of in the last few days.) The trouble is doing it without doing further harm to the person I hurt.

It is not easy to be good. But it is easy to be better than I have been recently.


Four requests

I’ve yeilded to the requests of people in comments to un-ban the letter I, largely because it’s so hard. (Even if I write without mentioning bulimia, depression, suicidal ideation or using the word “I”, writing without using it, is, if, with, which, this and the -ing and -tion suffixes is all but impossible.) I want to write a sonnet not containing the letter I at some point, just as a challenge.

I have four requests for you, lovely readers:

1. Pray for Danni. (EDITED TO ADD – I stupidly forgot to post a link to her blog. It’s here) She is having a really hard time with her ME – her symptoms are at the pretty severe end of the scale, to the extent that she can’t sit up for more than 10 minutes without feeling even more ill. This is a serious problem, as she has a very important medical appointment tomorrow, which will involve a lot of sitting up. She has already tried this once and it didn’t work out because of the amount of sitting up involved.

2. Pray for my friend David. He’s currently one of the more-than-a-million young unemployed people in the UK. He has a job interview tomorrow.

3. Pray for me. My head is a mess and I’m screwing up my degree because of it. I am so sad and tired. Also my wisdom tooth is being a pain in the, er, tooth? Which I shouldn’t complain about, since so many people I know are in much worse pain on a daily basis.

4. Post happy YouTube videos in the comments.


Announcement

Vowel number three of the Roman alphabet has now been banned from posts here for one month. That letter can, however, be used by commenters.


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