World Down Syndrome Day Happiness

This is one post that has left me perplexed.  Where do I begin?

I think I may write two posts for today.  The second will be about our Jen.  She is 34 and lives with Down Syndrome.  We joke that in heaven we will not be able to touch her toes.

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My first post?  Is not going to be about rockin’ any socks either.  Because I am just too rockin’ saddened, momma bear angered into a stupor of disbelief at what I read this afternoon.

For those of you who know our family, it has become very apparent over these past two years of struggling for Joseph (who is Autistic and does not have DS, but nonetheless, our experiences of the past few years with Joseph represent real lived encounters with a young adult who lives with a disability) ~ encountering repeated discriminatory, insurmountable barriers when it comes to accessing health care at various local community hospitals.

Today, I read the following words below.  These quotes are from the National Council on Disability, September 30, 2009 report entitled “The Current State of Health Care for People with Disabilities”

Health and Health Disparities Research

  • Dissonance is evident in the research goals and objectives of key agencies of the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH) between the longstanding public health goal of eliminating disability and disease and the emerging view fostered by the U.S. Surgeon General’s report “Call to Action To Improve the Health and Wellness of Persons with Disabilities” and Focus Area 6 in “Healthy People 2010,” which for the first time in public health parlance, defines disability as a demographic characteristic.
  • Much of the Federal research effort remains focused on disability and disease prevention rather than on improving access to, and quality of, health care for people with disabilities, reducing their incidence of secondary health problems, and promoting healthy living.
  • Here’s the link for the entire report for those who want to read more:  Disabilities and barriers to health care

Suddenly, quite a bit becomes clear.  There is a real reason that we are encountering the horrific state of medical care for adults who have disabilities, and the complete lack thereof.  It is because our government does not think they should be born.  Disabilities should be eliminated.

I am starting to feel like I live in a Sci-Fi movie, a very bad one.

Do you know that no one with Down Syndrome has been allowed to be born in Iceland for the past nine years?  Please, do not use your vacation dollars to see beautiful Iceland.  Knowing this news makes it not so beautiful at all.

Well, how about here in America?  Land of the Free Home of the Brave?  We are a strong people, hardy and come from great immigrant stock ready to meet life’s adversities, right?I wonder if we are losing our way as a people.  We scream for equality, but have no idea what the bandwagon is really all about before we jump on it. End discrimination?  There is NO. POPULATION. IN. AMERICA. THAT. SUFFERS. FROM. DISCRIMINATION. MORE.THAN. PEOPLE. (HEROES ACTUALLY.) WHO. LIVE. WITH. DISABILITIES. (hey, wordpress, where’s the yellow highlight button?)

  • Over 92% of prenatally diagnosed infants who have Down Syndrome are aborted.
  • Young couples pregnant with a pre-born baby diagnosed with Down Syndrome are pressured to “terminate” every single day in this country. (Believe me, I hear from them) (some of them are pressured to the very end of the pregnancy, not lying)
  • Unemployment rates for disabled adults is over 80% in some areas of the country.
  • Colleges don’t offer programs for them.
  • Towns don’t have housing for them.
  • Hospitals won’t admit them.
  • Public Transportation for them is a joke.  Non-existent in reality.
  • They are considered a liability instead of a blessing. (Ya, life is tough. Whose isn’t?)
  • Some people think they shouldn’t be allowed to live.
  • Some people think they shouldn’t be allowed to live. (just in case you read it too fast the first time)

Have you ever heard of Peter Singer?  I met him long ago, in the English book at the local junior college when our kids took classes there.  I had never heard of him before.  I wish I never had heard of him.  But that’s the idea.  Most people don’t know who he is, nor how quietly, stealthily he has been at work in a very important business.  Shaping minds.  Shaping opinions.  Of people who will be future leaders in this country.  Sound alarming? It is.

This man has been appointed as Ira W. DeCamp Professor of Bioethics in the University Center for Human Values at Princeton University.  Of course, there is no hidden government health goal (riiiiight) of social engineering the bright minds of students who will be future law makers, future doctors, lawyers, judges, hospital administrators, employers…  Somehow people who are intelligent should surely see a person born with a disability as, as, as.   All intelligent people’s thinking should be in line with enlightened and learned people like Peter Singer, right? I mean we do want to think of ourselves as highly educated, progressive thinkers, right? Well, read for yourself:

“Worlds most influential philosopher”

Need to read more?   Here are his own words, (because people will tell you that the person who wrote the above article must have misunderstood Mr. Singer’s teaching):

Princeton University, can you please give someone of real intelligence, non-discriminatory compassion the job of Ira W. DeCamp Professor of Bioethics in the University Center for Human Values?
Or is this the kind of “BioEthics” you’ve always intended be taught at Princeton?  Here are few words from the professor himself:

definition of un-voluntary, in-voluntary euthanasia includes handicapped infants

Well. yes siree Bob, I think about now my good grandmother is about rolling over in her grave.  How the heck?  Does a man like this get a JOB, a real bonafide, paying job, a tenured professor at that (!!) (??) teaching such things to the impressionable, idealistic minds of American youth at one of our country’s most prestigious universities?

Princeton University, why are you allowing this?  Why, oh why would you hire such a man?

America, what are you going to do about it?

All discriminatory attitudes towards disabled people affects every one of them.   It affects their siblings, their parents and their grandparents.  Did you know there are more than 57 million people in the United States who live with disabilities. Oh wait, the government is working on that…….

And tonight, my little family, with all its warts, frustrations, lack of answers to such perplexing questions, will pray in a special way for Peter Singer, and any who thinks the American government should be in the business of making sure our country rids itself of handicapped citizens el pronto.

As we all sat in our Cinderella dresses, with hundreds of other people at the Gigi’s Playhouse “I Have a Voice” Gala last weekend, Nancy Gianni, founder, CEO and chief belief officer gave a heart rousing speech, and drove one truth home, “We are all one accident, one birth, one stroke, one fall off of a bike away from becoming different, or loving someone who is different….”

As just so I finish this post on a POSITIVE note, Heeeeeere’s NANCY!  give her a listen, then open your wallet. Donate to GiGi’s Playhouse today.  Tell them its for Jen Donnelly and all her friends!!! Support all these heroes who live with Down Syndrome, because (and please hear me, Mr. Peter Singer) IT. IS. THE. RIGHT. THING. TO. DO.   (oh, wordpress, need a yellow highlight button again…..)  Does anyone know right from wrong these days?

Support these heroes who live with special needs!!! Help their light to shine, help it to grow!!!  Please give to GiGi’s Playhouse today.

Nancy Gianni Founder and Inspiration, helping thousands of kids who live with Down Syndrome and their families

“Each of us has power to change the world.” Nancy Gianni

So what kind of world do we want for our children, and their children’s children?

I’d much rather our nation be a little poorer for having helped her own people, than a nation entirely poverty stricken for having killed off those deemed “unworthy”, “unproductive”, “too costly”,  or “inferior”.

I totally think “preventative” medicine, improving people’s life choices to achieve the best health possible is a noble goal, murder is not. (and you are pretty darn lucky I don’t start on the lack of access to fitness anything for people who live with disabilities.  I know. I know. Why bother.) (Heaven help us.)

Here’s to next year , that people will choose to do right, to be better, to be giving ~ so all of us can  have a better World Down Syndrome Day!!!






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