Different and equal​

Our society has a major problem with people “different” from us. Different than how we look, how we talk, and sometimes how we communicate. Different seems to threaten our level of security, and likely shines a light on our own insecurities. Different makes us feel uncomfortable because it takes away our ability to control our environment. Why else would our ancestors have committed the egregious evils of slavery, segregation, the Holocaust, the Rwandan genocide, and the many horrific genocides that have and are taken place currently, some that we are still not even aware of? We can study these events for years, and the psychology of how and why they took place. But if you look at the core of the issue, you will see a group of people who were persecuted for being different. “Your not like me, you don’t live like me, you don’t talk like me- you’re different.”

Unfortunately, this has never been truer than for people with Down Syndrome. From weeks into your conception, you are offered testing to confirm your baby has no abnormalities or differences. Genetic testing is what they call it. Though the results of my genetic testing FELT like a death sentence to me, they are in fact a REAL death sentence to most children conceived with Down Syndrome. Now I’m not of the belief that genetic testing is wrong. I believe it is remarkable and a great advancement to science, and shows what we have achieved as human beings. I also believe anything that can shed light on our present reality, and help us become more aware of what is going on, was likely meant to be a true gift from God. Had I not known all the many health problems Grayson was diagnosed with, (which I will go into further detail in another post) I would not have been able to pray for Grayson and speak life over him-which I assure you is the reason he has no health problems now. Had it not been for genetic testing, I would not have had the knowledge of the many dangers that lie with his health, therefore I would not have had the information I needed to pray strategically.   I would not have known what to speak to his little sick body and what area’s needed specific prayer. It was only when the dr’s confirmed his markers had changed, did I know he was okay.  So I am an advocate of genetic testing. But as with all gifts, such as genetic testing, there is a major downside attached to it. Prenatal testing has decreased the Down Syndrome community by over 30%, from a report done in 2009. This number is not to be confused with the percentage of women who opt for an abortion after they received a prenatal diagnosis. 67% of American children having been diagnosed with down syndrome are aborted in the US. The statistics increase to 90% for countries like in the UK, 98 % in Denmark, and 100% in Iceland!! (This data was collected before the non-invasive Cell Free DNA testing was offered at 10 weeks). It has been reported that less than 3 children (not 3%) a year are born in Iceland with Down syndrome, (compared to some 6,000 in the US) and this is due to the parents receiving a false diagnosis, so they are not aware their child had DS. I find it diverting that the countries that have the highest rate of termination are also the countries that have socialized health care. I read an interview with a genetic counselor who helps women with the arduous decision of whether to terminate or not. The women are given a prayer card after termination of the fetus’s footprints with the date of the babies termination so they can bring their card to be prayed for by a priest. “We don’t see these abortions as murder, like people in the US do “, the counselor says. “We see it as a “thing that we ended” from having the potential of a difficult life for them and their family”, she reports.

The very act of the prayer card, to me, seems to humanize the fetus, which is contrary to the belief that it is the “ending of a thing”. I’m not writing this to debate the issue of abortion, though I am sure you can tell where I stand on it. But what I am writing about is the “reason” behind these abortions after a prenatal screening test. Seeking an abortion because you do not want to be pregnant, or have a health condition that could cause death, is the abortion issue. What I am talking about is very different. Prenatal screening is giving women the option to seek an abortion because they do not want a disabled child, not because they do not want to be pregnant. Our society has labeled disability and decided what is a right, good, normal, and an acceptable life to live with it and it is not our judgment call to make. We have stepped into the role of the Creator and decided to tell Him what life should look like, and what we will accept from that life. Why are kids with Trisomy 21, 18 and 13 singled out while no other form of testing is being done? Why are we not testing to see if babies will become serial killers, child predators, or terrorist? The way genetic testing is performed and handled in the medical community is very dangerous ground and has been accepted as normal for hundreds of years. And we haven’t even discussed the many other problems that go along with the testing done such as the risky procedure of amniocentesis, and the many false positives of these tests that have resulted in many unnecessary abortions.

An extraordinary deceased disabilities rights activist, Dr. Adrienne Asch once said, “The only thing prenatal diagnosis can provide is a first impression of who a child will be. Making such a radical decision as to end the life of a child based upon a first impression is the most horrible and violent form of discrimination. It has no place in an American society that is committed to ending discrimination in any form”. (Prenatal Testing and Disability Rights, Adrienne Asch). Dr. Asch, ironically enough, was Pro-life. But when it came to the practices of abortion , due to genetic testing, she was extremely outspoken about it.

To me, this whole practice is a targeted annihilation of a specific demographic of people, paid for by health insurance. Why? Because society sees Down Syndrome as a tragedy, rather than just a natural part of humanity. I don’t know if you watched that crazy movie BirdBox on Netflix yet, but if you haven’t I will try not to give away the ending. The movie was a bit much for me, but I loved the ending. The world had been taken over by these crazy -zombie-like people, and you could not look at them, or you would turn into a crazy person and ultimately kill yourself. So the main character in this movie had to blindfold herself and her children to get them to safety. What was safety? It was a compound of people who had survived the chaos, not because they were more skilled, clever, or stronger and knew how to fight these people off. They had survived because they were different. They had a handicap that limited them to living a “normal” life, but in the end, this “handicap” saved them from the calamity that affected everyone else in the world. Now there is something new for Hollywood, embracing something different about a demographic of people, and not only embracing it-but making them the superheroes because of their limitation.

I often wonder, what our world would look like if we have even just 1/8 of the population with Down syndrome in it. Our world is full of really messed up, stressed out hurting people. I believe our Creator did not make a mistake when he created human beings with Down Syndrome. I believe He was trying to balance out society and diversify it with as many different personalities as possible. As the newest activist with Down Syndrome Frank Stevens spoke before Congress, defending the rights of people with Down Syndrome, “We are an unusually powerful source of happiness”.

Look I get it, having a child with Down Syndrome, or any other abnormality is one of the scariest things you could embark on. Even though Grayson has Down Syndrome, he is still a fairly easy child to raise….well I’m lying…he has been really easy to raise…lol. But I know there are many many parents who have children with Down Syndrome who have an extremely tough time with them because of health concerns, behavioral issues, and schooling, but despite that, I haven’t met a single parent yet who regrets having their child. I hear quite the opposite. Statistically, families who have a child with down syndrome raise children (siblings) who are more compassionate, and parents to children with Down Syndrome have a lower divorce rate than families who have non-disabled children (based on a study done by Vanderbilt Kennedy Center in 2002). I could name a slew of problems I am going to have to worry about with Blake and AJ later on, that I absolutely will not have to worry about with Grayson. I remember praying and crying to the Lord about why Grayson had to have down syndrome during his first few days of life. I said “why couldn’t I have just had a normal child? I want him to be able to have a good life-like Blake and AJ will when their older!” Then seconds later…” you know Lord, normal”….to which He said “Oh you mean working 70 hours a week to support a family, stressed out, half depressed, half tired all the time-normal! ” Yup, those were His exact words to me. It was like God was breaking my paradigm of what I thought normal was.

What will it take for our world to recognize that having a different body, a different mind, a different way of developing, and a different approach to life does not equate to a deficit? When can we begin to learn from those around us who operate in a different manner because they have had to from day one? Think about someone with a disability, and how different their life is on a daily basis. What is it you could learn from them? I’m not saying many of them are pleased they have a disability, but perhaps many of them are quite content just the way they are? Perhaps they have trouble walking, therefore have to slow down more, or perhaps they are more sensitive to noise and as a result, have to live a calmer quieter lifestyle. What can we learn from them, rather than look at them with pity and “feel bad for them?” A Harvard based study showed that people with Down syndrome as well as their parents and siblings​ were happier than society at large.

We have to get to the place where we stop trying to “predict” what life would look like before it has even happened for these children. Can you imagine if a “not going to be able to do it” was decided every time you were faced with a possibility of ” it may not come out right?” I tell you for starters I would have never gotten married, I certainly wouldn’t have started a business, and I sure as hell wouldn’t have had ANY kids. Every decision we make involves risk and has either the potential to turn out really good or really really bad. That is what is so great about life! Life isn’t about having faith that everything you do will turn out perfect. It is about making choices and having faith that in those choices, your life will turn out the way it was meant to be. And each turn and corner, scary and unknown will make you into an even greater human being than you ever thought possible. Even if it ends up being different then you ever imagined. ​