Amelia Rivera - Eugenics is alive and well and thriving in a Philadelphia Hospital!

http://simeonstrail.blogspot.com/2012/01/open-letter-to-medical-director-kidney.html

This relates to Amelia Rivera, the three-year-old whose life saving kidney transplant is being withheld from her on grounds that ONE doctor (unfortunately for Amelia, a powerful one) believes that as she has intellectual delay, she's not worth a transplant, even though the proposed donation comes from within her own family and NOT from the organ donation register.

We can all of us forget every cause we ever cared about if we can't as a global community get this Doctor (and by extension this hospital) to stop trampling on this ONE child's Human Rights, which are so blatantly being denied her.

If we can't protect one single child from the bullying and discrimination of this full grown man (who's extremely lucky that nobody gets to make a life or death decision on his worth as a human being given the strength of feeling out there globally!) then we have failed on the most basic level and better hope that those who predict the end of the World this year were right after all.

Here are the relevant links for any who feel something must be done to add their voices:

• The Hospital involved: https://www.facebook.com/ChildrensHospitalofPhiladelphia
• The Petition: http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive (if you never sign anything else, lend your support to this!)
• The relevant local radio: https://www.facebook.com/nbcphiladelphia
• and another nearby media facility: https://www.facebook.com/News12NJ
• and if anyone would like to contact the head of the Transplant Team involved, his name is Dr Baluarte

Project 2012

Just so that you know, I am starting a very exciting sideline project for 2012.

The project has it's own blog over at: http://2012miniannusmirabilis.blogspot.com/
where project specific updates will go.

I'm still keeping up this blog periodically for now, but there's likely to be more activity over there for most of this year.

For anyone who may have missed it, the Charity auction in Novemeber raised €290 which was divided between Northwest Hospice Sligo and Dogs for the Disabled Ireland.

The last of the certificates are currently on the way out.


HUGE thank yous once again to all who helped or supported in any way!

Slow Love Life: YARNS

Slow Love Life: YARNS: I'm obsessed by all things yarn and fabric: knitting, weaving, sewing. Admirable crafts. Not that I can do much in these ways. Lately--and m...

Charity Craft Auction On-line Catalogue

There are 52 Shopping Days until Christmas. Do you still need a present?

Have you taken, or are you considering taking The Handmade Pledge?

Are you looking for a hand crafted gift?

Charity Craft Auction, Friday 25th November, Murray's Vintage Tearooms,

with Special Guest Auctioneer Luke 'Ming' Flanagan

In aid of Irish Dogs for the Disabled & North West Hospice Sligo

The online catalogue for the auction has been updated here:

http://www.facebook.com/media/set/?set=a.198055683604511.49136.103001289776618&type=1

Keep checking back as items will continue to be added as they are received.

*****We do have limited facilities for bids from interested parties outside of the geographic area, so it IS worth having a look.*****

Many, many thanks to wonderful local artist (and auction contributing artist) Kim Cowley for creating this wonderful poster for the Auction:

We have some lovely pieces pledged so far, but we still need more. - If you could contribute a piece of Art or Craft for these fabulous causes, please get in touch.

Also, lovely contributors, could you please fill out a contributing artist's profile (available on the main auction website) to enable us to start promoting you and compiling a catalogue of all the fantastic pieces we have.

HUGE Thanks again to everyone for helping to shape this into the incredible evening it will be.

Changes to the project

Well now, how time flies!

Unfortunately, just after starting the project, I got hit with complications involving my hands which kept me away from my needles for a while.

However, I am still comitted to the project and to the fundraising, so I've made a few changes to the project in order to make it more achieveable under current circumstances.

So now, I've changed the overall theme to "Home" in order to make it more accessible to a wider group of people and on the advice of other crafters, opened the project to other contributing artists too so that other people can join in. You can find details on how to join in on the "Needed Items" section of the website at http://mrsmouse.webs.com.

In the intervening time, I've also managed to find a venue for the auction. Murray's Vintage Tearoom in Ballinamore have offered to play host to the exhibition/auction on an as yet unspecified date in November of this year (2011).

Meanwhile, the search continues for an auctioneer. The suggestion is we find a "celebrity auctioneer" - I'd love to get your ideas and input on this

Newstalk got me thinking about the big "Quality of Life" question again...

http://www.newstalk.ie/2011/programmes/all-programmes/moncrieff/seans-opening-story-belly-dancing-swindler/

The above is a story covered by the very excellent Moncrieff Programme on Newstalk Radio and while it seems pretty clear that this individual, as the Judge decided, was guilty of fraud, it got me thinking about people's perceptions of what it is to be disabled - especially, what it is to be young and disabled.

I've pasted my response below:

Cases like that can be really complicated though - and can be hugely frustrating for those of us who're genuinely disabled and yet trying to be as productive citizens as we possibly can.

- Obviously, in this case, she's either pulling a fast one or has been badly advised because while they always tell you to strengthen your stomach muscles with long term spine issues, she should have been told that belly dancing (like pole dancing) is extremely high-impact on the spine and so not suitable.

Other forms though, maybe ballroom dancing, done at a low level and carefully and not for long periods, could be very beneficial.

The trouble is, getting the balance right. If you're disabled by an injury like that (I was too, though under different circumstances) and especially if you're young - the prevailing attitude you get from so called "health" professionals, is one that if you're making the best of it and getting on with accepting your lot and doing your best to make life work, the you must not be trying hard enough, which is usually followed up with advice to "just do ANYTHING to get more active"

The problem is, "Health" is more than just the medical side of things. - Yes, it's obvious that if someone is genuinely disabled, they ought to be supported, but those disabled people (like me) who're lucky enough to be granted a pension from the state, then have a civic duty to be as productive citizens as they can possibly be in whatever way they can. (For me that's a mix of volunteering; occasional days working in education; crafting for charity; studying; and keeping my blog (http://mouse-hearthside.blogspot.com/) - which deals specifically with the realities of living with disability and being young.)

Doing things like this, not only allows for occasional contributions back to the state (generally through other means than financial, but hey, every little helps - right?) but helps to keep you sane and feeling useful - like you actually have a role to play.

"Quality of life and emotional/mental health is vital for anybody. - For those of us with a disability it can also mean the difference between having the interest and drive to go out and grab life with both hands and be the best person that we can possibly be, or not pushing so hard, which can result in lower mobility and poorer physical health, depression, frustration and a whole load of negative things that not only affect us, but our families, neighbours and communities as well.

Incidentally, having lived under both the UK and Irish disability pension systems, I have to say, the Irish system is much better than the English one in terms of enabling those on disability allowance to even look into a proper quality of life and being able to at least in part keep up with their civic obligations,

So I can't help but wonder if, beyond any personality flaw that leads to the kind of abhorrent behavior highlighted in stories like this one, whether there's a roll that's played by the persistence by a stupidly large majority of people that if you're disabled you must be a wheelchair user, over 30, who stays quietly out of the way and doesn't get under anyone's feet or slow them down and who's idea of a high time, is being taken out for a run in the car just to the paper shop and back. - It certainly won't help. I just hope that this story doesn't cause even more prejudice against disabled people who're genuinely trying to be as well, as independent and as able as they possibly can!