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Some Thoughts on Advocacy and Being Politically Correct

Posted Jan 27 2009 6:28pm 1 Comment

You may have noticed on the bottom of this page that I am a member of Raising Children with Down syndrome on CafeMom.

There was a post earlier this week that has brought to the light how hurtful words can be. The post mentions a picture of a tiger who appears to have Down syndrome. The picture appeared on the Internet last year.

Scientifically speaking, the picture is a fake. Tigers have 19 chromosomes for a total of 38. It is not physically possible for a tiger to have T21 as there is no 21st chromosome.

Under the original posting of the picture, read something like this.. "....people with down syndrome should be taken to an island & killed. They are a financial drain on society & money could be used to feed the hungry or help the homeless."

The person who responded in this way is stupid. He/she is not an ignorant person.

Yes, there is a difference between ignorance and stupidity. Frankly speaking, ignorance can be taught; stupidity can not.

Now, should Fran, the person who posted this on the CafeMom group have been offended by the comment? Oh, absolutely! It is offensive. The offending person obviously has never met anyone with Down syndrome. Unfortunately, society is full of people who have never met a person with Down syndrome. While comments like this are rare, they do occur. And the belief is still there that our children will be a drain on society. Even as we sit here today, with the advances in medical research, the general population of the world still think of people with Down syndrome to be useless, mindless beings.

Less than 70 years ago, children with Down syndrome were put into death camps. We have all heard of the term "euthanasia" or mercy killings. But do you know how it started? A couple in Germany who had a child with Down syndrome wrote Hitler a letter asking that he order the death of their child. The idea was a good one according to Hitler and Aktion T4 was born. This is stupidity

Action T4 (German: Aktion T4) was a program in Nazi Germany, officially between 1939 and 1941, during which the regime of Adolf Hitler systematically killed between 200,000 to 250,000 people with intellectual or physical disabilities. The Nazi regime began to implement "racial hygienist" policies as soon as it came to power. The July 1933 "Law for the Prevention of Hereditary Diseased Offspring" prescribed compulsory sterilisation for people with a range of conditions thought to be hereditary such as schizophrenia, epilepsy, Huntington's chorea and "imbecility". Sterilisation was also mandated for chronic alcoholism and other forms of social deviance. This law was administered by the Interior Ministry under Wilhelm Frick through special Hereditary Health Courts (Erbgesundheitsgerichte), which examined the inmates of nursing homes, asylums, prisons, aged care homes and special schools to select those to be sterilised. This is stupidity

This precedent was used to establish a program of killing children with severe disabilities from which the guardian consent element soon disappeared. From August the Interior Ministry required doctors and midwives to report all cases of newborns with severe disabilities. Those to be killed were "all children under three years of age in whom any of the following 'serious hereditary diseases' were 'suspected': idiocy and mongolism (especially when associated with blindness and deafness); microcephaly; hydrocephaly; malformations of all kinds, especially of limbs, head, and spinal column; and paralysis, including spastic conditions. The reports were assessed by a panel of medical experts, of whom three were required to give their approval before a child could be killed. This is stupidity

And then, what, 20 years ago, children with Down syndrome were being placed in institutions. I'm not talking group settings. I'm talking asylum settings, where the children were strapped down in cribs, no interaction what-so-ever. This is ignorance, we now know better

Today, children in Russia who have Down syndrome are not even treated as humans. They do not go out during the day due to the ridicule that they receive. They are not allowed medical care. For those with heart issues, they are simply left to die. The majority of children are placed into orphanages (see the description of institutions) and forgotten about. Yes, many do die by the time they are 5. They do not have a right to an education. There is one school in the entire country of Russia dedicated to educating children with Down syndrome. And they run on very very limited income as the Russian government will not spend one cent to educate these kids. This started out as stupidity, but throughout time, has started to see the light of ignorance

No, stupidity can not learn, they can not be taught. However, for those few feeble minds who are the truly ignorant ones, we must advocate. We, as parents, must educate. Not so that they will be "politically correct", but to be decent to one another.

Now, there are several ways we can choose to advocate. And how we advocate makes a huge difference.

There are those who choose the "militant mom" way of advocacy. These are the moms who yell, scream, and bring a lot of attention to a cause by shoving issues down the throats of everyone. But keep in mind, there are other "militant" groups out there. What benefits have these groups brought to their cause? Think of the group "God Hates Fags", you know the preacher who said that Matthew Shepherd is in hell because he was gay? The preacher who pickets the funerals of fallen soldiers because God hates America so much? Does this shed a positive light on him or his cause?

The louder you scream means that people hear you, but are they listening? More than likely not. We are all guilty of looking at people doing the same thing and thinking "What a nut!" Admit it.

Then there are those who chose to advocate quietly. These are the moms who really don't say anything unless they HAVE to. Do people hear the message? Not a lot, but they do listen.

Is there a mid-ground? I believe so. The way I choose to advocate is to be proud of Aiden, regardless of his shortcomings. No, I don't say "Aiden has Down syndrome, so deal with it." I can't force anyone to accept Aiden because he has Down syndrome. That isn't why I advocate. I don't advocate for Down syndrome, I advocate for Aiden in spite of having Down syndrome. I keep things in perspective to Aiden.

Aiden is a child first. Then Aiden is a heart patient. Thirdly, Aiden happens to have Down syndrome. His heart issues take up a lot more of my time than his Down syndrome issues. And that is why I advocate. To educate that children with Down syndrome are CHILDREN FIRST! Once someone (anyone) gets that they are children first, most don't even see the syndrome.

Am I going to change the world? I highly doubt it. But have I made a difference in just one person's way of thinking? You betcha. So, yes I have done my job as an advocate for Aiden. Because of Aiden, lots of people who used to say "retarded" instead of "goofy" or "stupid" no longer do. Because of Aiden, a few people no longer use the term "mongoloid" to describe a person with Down syndrome.

Full acceptance of Down syndrome isn't going to come overnight. Change doesn't work that way. It took over 100 years for African Americans to achieve change. While we have come a long way in the past 40 years, we still have a long way to go. And that is really all it has been ladies, 40 years.

We do need to develop a "thicker skin" when it comes to the things we are going to hear. We have to pick and choose our battles. Yes, people are going to say things that hurt and sting. But that is nature of the beast.

Comments (1)
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I think that person's comment is despicable, and I see nothing wrong with people who have Down syndrome. That being said, the pic IS real, although it does not portray Down syndrome. That tiger is deformed (as well as mentally retarded) due to inbreeding. White tigers are not their own species, but rather the result of a genetic mutation. Due to the rarity of this mutation, white tigers are often bred with their siblings on the chance that they'll produce more white tigers. While some come out looking fairly normal like the ones Siegfried and Roy have, others like this famous cat in the picture suffer from deformities. It really is heartbreaking, and although it has nothing to do with Down syndrome, this picture is in fact authentic.
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