Welcome to Just Juniors

In September of 2008, my 7th daughter Samara was born 9 weeks early. 4 weeks later, she was diagnosed with Down Syndrome. My self-therapy in learning to fully embrace her diagnosis involved designing t-shirts that portrayed Down Syndrome in a positive light. It is from this that my business, designing disability awareness products, has grown.

Saturday, February 18, 2012

Beauracracy at it's Finest

Todays post is way off on a tangent from disability issues, but seems to me to be completely in line with the politics behind the immigration issues we are facing.

15 days ago our town was flooded. Again. For the 3rd time in less than 2 years. 2 of those times it broke all previous records. Some people haven't been back in their homes long, and now they are homeless again.

We were evacuated and lost a few things (the worst being our van which isn't insured) but overall we got off very lightly. Our house is a highset (built up on stilts basically). So our living areas were spared. And, we were well looked after while we were out of our house. We had forgotten to grab Samara's oxygen concentrator, so the hospital lent us one. A couple of hours later, we were told that an organisation was paying for us to stay in a motel rather than the evacuation centre due to Samara's health issues. They didn't even care that we are not Australians!!

In the first week post flood, I got to take part in a wonderful group that was set up by a local resident. We baked (well, I didn't - but over a hundred people did), made sandwiches and cooled hundreds of bottles of water. We then organized volunteers to deliver them to every flood affected house in town. Twice. Every day. Morning tea, and lunch. It was an amazing community effort, that meant those cleaning their homes out could take 5 mi utes out of their day to refuel and avoid dehydration in the Queensland heat.

Sounds great, huh? We all thought so. As did the 1000+ people who we fed. But Disaster Management were not convinced. After just 3 days, we were told we needed to stop. Why? We're we breaking health laws? No. We were checked every day for that one. Was the demand gone? No. In fact it was still increasing at that stage as people made their way back to their homes for the first time. Unbelievably, we were told to stop because it was time people got back on their feet and started supporting the local economy by buying their own food! Seriously! Now, we were buying our ingredients locally, so how was us stopping going to help the economy anyway? I can answer that. Flood victims did not have power back on yet. They did not have sanitary kitchens to prepare food in. They did not have the time to cook, even if they did have the means. No, our free labour meant the locals were not wasting their money on fast food and cafe's. Places they would not have been eating under normal circumstances anyway. Thankfully the local Lions Club took us under their wings (do lions have wings? Manes maybe?). Anyway, they let us operate from their premises and under their insurance. We were able to continue feeding people for the rest of the week.

Then, this last week I started concentrating my efforts on helping at the flood donation centre. And can you believe they are being told to close down and not give things away cos it hurts the local economy when all the victims are not having to shop for replacement items. Like, as if half the population of our town had been planning on replacing all their household goods just 2 weeks ago anyway! If people weren't going to be lining up two weeks ago to get new toasters, then they haven't really lost any business have they? What they are losing by us running a donation centre is the opportunity to profit from a disaster.

I would love to know where the officials who decree these things are when local landlords are raising their rents to new tenants to horrific all-time highs, just because there is a shortage of housing....

I love Australia. I love the people. I am glad we moved here. But when it comes to politics, I am honestly baffled and saddened beyond belief.

Saturday, January 14, 2012

A Life Worth Living? Apparently Not.

Today I was saddened, sickened and disgusted to read the story of little Amelia. At just under 3 years of age, her doctor at Children's Hospital of Philadelphia has deemed her life as unworthy. Why? Because she has been deemed unfit for a much needed kidney transplant. Not medically unfit, mind you. Intellectually unfit. That's right. Because young Amelia has Wolfhirschhorn Syndrome. A genetic disorder that has left her with an intellectual impairment. Or, as her doctor so lovingly put it "mental retardation".

What gives ANYONE the right to put a value on someone's life? Much less, to exercise their power to bring that life to an end, against her parents wishes, just because they can? Further, this family isn't even asking to go on a donor waiting list, they are lining up to be tested and donate their own kidneys. Not that this should be an issue either. After all, even with the donor lists, what makes one persons life more worthy of being saved than another's?

And, can you believe, that this doctor had the audacity to tell her parents that “I have been warned about you. About how involved you and your famliy are with Amelia.” I beg your pardon? Warned about parental involvement? Now that really got my hackles up! Shouldn't we be more concerned about parents who are NOT involved in their children's care?

Be sure to head over to CHOP's Facebook page and add your voice to the thousands there who are letting them know just what we think! http://www.facebook.com/ChildrensHospitalofPhiladelphia

Then head over to http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive# and sign the petition to get Amelia the surgery she needs and deserves.

Here is my post from their Facebook page:

I am mentally retarded. Compared to the likes of Einstein, my IQ counts for not a lot. Of course, even Einstein's teacher labelled him as intellectually inferior. I guess if he had needed surgery at CHOP he would have been denied too! Out of curiosity, at what level is someone deemed unworthy? Presumably, my level of "retardation" isn't as pronounced as my daughters (who has Down Syndrome), but, from the evidence I have seen, it is not as pronounced as this doctor's, this social worker's, or this hospital's either. So, I am still left wondering what the magic number is that makes one person's intelligence more worthy than another's.