The Silly Times

As much as I want this blog to be informative about disabilities, I figured a more light-hearted post would be a nice change up.

In this post, I will share some funny stories about my brother who has Down syndrome. These aren’t meant to embarrass him or to be mean spirited. Sharing these stories is simply to show how our relationship as twin brother and sister as well as our family dynamic is just as typical as any other.

This first story took place just this very morning:

I was on the phone with my brother and we were just catching up talking about our plans for the day and I told him I had some chores to do around my apartment like laundry and packing for an upcoming move. He told me he was proud of me for doing chores. I asked if he was going to do any chores for our mother today and he replied, “Probably not.” And if that doesn’t encompass his personality perfectly, I don’t know what does.

This one is from our childhood and captures the brother/sister relationship perfectly:

As typical siblings do, my brother didn’t always want to hang out with me when it was just the two of us. But when I had a friend come over, suddenly he wanted all my attention, which I did not want to give him because I was too busy with my friend. He would drive me insane! He felt like once a friend came over it was time for show and tell. He would pop in my room over and over to show us a toy or tell us a joke and me, being the mean sister I was, did not want him interrupting my girl time. On one occasion, when annoying us by interrupting valuable friend time proved fruitless, he decided to steal some of my Barbies and my mother caught him mid-act of getting ready to throw them at the top of his closet. His logic was pretty sound if you ask me, get rid of public enemy number one: Barbie, and then we would be forced to play with him. I was not happy of course, but now his little evil genius ways make me laugh.

This last story is from a family vacation from when we were about age 10 and is still one of my favorite stories:

On a family vacation to Tennessee, we had planned to attend a magic show. One thing you need to know is that my brother has two fears: birds and bad weather. The billboard for this magic show had a bird on it along with various other animals that would be featured in the show. My brother being terrified of birds made a huge fuss about not wanting to go. My parents had already bought the tickets and we weren’t going to let him ruin a good time, so my parents, like any other parents, swore up and down that there weren’t going to be any birds so he would cooperate. Well of course the final act of the show included a bird (a duck or a goose? I don’t remember) and he had a fit and my mother took him to the lobby until it was done. And remember that other thing he’s afraid of? Bad weather. Well, we also sort of assured him it wasn’t going to rain, so naturally, when we went to leave it started pouring outside. Once we were all in the car, my brother told our dad (because of course everything is always Dad’s fault), “You lie like a bug!” We all started laughing and he was so angry, even more so because we were laughing. Instead of saying, “You lie like a rug” he said “bug” which we thought was so funny because he really thought that he had the right phrasing and said it with so much vigor that we couldn’t help but laugh. He was right about the lying though, there was a bird in the show and it did rain. Even though it wasn’t funny to him at the time, now my brother brings it up as a funny memory from that vacation.

I hope these light, cutesy stories bring a little smile to your day and we can all take a look back and laugh at the silly moments.

Happy Friday!

Eugenics: Is it Ethical?

Take a look at these photos:

What do you see when you look at these photos? The first and perhaps the most obvious is that all of the people in these photos have down syndrome, but what else? I see a proud boy giving a thumbs up, a laughing little girl, and a goofy couple having fun together. You probably see the same emotions and actions that I do.

The people in these photos are somebody’s children, siblings, friends, cousins, students, coworkers. They are silly, fun, happy but experience anger, pain, and sadness too, just like we all do. The only difference is the fact that these people have Down syndrome.

“Okay, so what?,” you may be asking yourself. “I know what Down syndrome is, who cares?” Well, I care, and you should too. Here’s why:

Have you heard of Nuchal Translucency or NT? NT is a type of prenatal screening done during the first trimester that tests for a range of genetic disorders like Down syndrome, other chromosomal abnormalities, heart defects, and skeletal dysplasia (Gottfreðsdóttir and Björnsdóttir).

“Okay, great,” you may be thinking, “These prenatal tests are good.” I would not disagree. Making sure you have a healthy baby is important and I’d like to assume most women would feel better knowing whether or not their babies are at a higher risk for developing certain disorders or conditions.

Particularly in Scandinavian countries, most notably, Iceland, this type of testing allow mothers to decide if they want to continue with their pregnancy or abort. I do not want to delve into the ethics of abortion as a whole, rather I want to challenge the ethics of aborting a child with a disability simply because of these screenings and what they imply for expecting parents.

Before getting deep into discussing these screenings, it is important to understand what eugenics is as a concept. Wikipedia defines eugenics as “a set of beliefs and practices that aim to improve the genetic quality of a human population, historically by excluding people and groups judged to be inferior and promoting those judged to be superior.” Say what you want about Wikipedia, but this definition is spot on. One example history has shown us of eugenics is Hitler and the Nazi regime, aka, the genocide of Jewish people. We all know the story. Hitler believed the Aryan race to be superior and anyone who was not of the Aryan race, such as the Jews (although not just the Jews) were killed. History has proven this many times over with different types of minorities (racial, sexual, etc…) but that is a different blog post for a different day. I’m not trying to compare racial discrimination with disabilities, but hopefully my example makes sense within this context. What I am saying is that Hitler is one of the worst examples we can think of when we think of eugenics as it turned to genocide.

With that, my argument (and many other peoples’ arguments) are that these types of prenatal screenings are aiding in the practice of eugenics. According to an article by CBS News ,”Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.” That is a staggering statistic. But to be fair, another article by Icelandic Magazine, in response to CBS, claims that this number is misleading and that about 85% of women in Iceland opt for the screening and about 15-20% of women choose not to have the NT screening. The article also claims that of the women whose tests show a likelihood of their children being born with Down syndrome, about 15-20% choose to carry the pregnancy to term. But I wish the article would have cited the total percentage of women birthing children with Downs, not just the 15-20% of women who decide to carry the pregnancy to term. The article seemed a bit defensive in its response to CBS and they make their numbers look larger than they are, as 15-20% seems like less women are aborting, however, the total number of women testing positive for babies with Downs cannot be big. And this number doesn’t account for the women who have babies with downs who do not opt for the NT screening.

However, it is also important to note that the screening will not always be accurate and someone who shows no signs of having a baby with Downs may still have a baby with Downs and vice versa. It is also important to understand the cultural differences of Icelanders. The article makes clear that no religious ideology, political ideology, community, or its leaders have any say in the moral obligations of family planning. Also, Iceland has a much smaller population than the U.S. – about 364,000 as compared to about 328 million in the States. It’s only natural that the number of abortions in Iceland seem huge.

So perhaps Iceland isn’t actually practicing eugenics. However, a study conducted in 2005 reported that in Iceland in 2004 all fetuses diagnosed with Downs were aborted (Gottfreðsdóttir and Björnsdóttir). Of course the numbers have varied from 2004 to now but the fact remains that over the past 10 or so years, only 2-3 babies are born with Down syndrome on average each year in Iceland. That is not very many. And while some people may think this is a good thing, I do not.

The 2005 study prompted one woman to say of herself being a mother to a child with Downs,

“I did not have to face these choices. This situation was
not yet possible when I had my child. My perspective
reflects my experience. But what impression does it
give people if all fetuses diagnosed with Down’s syndrome are aborted? For us, the parents of these children, it raises the question … is society departing from
the basic principle of diagnosing defects which are so
serious that it is not worth living with them?” (Kastljo´s,
August 11, 2005)

So does the test itself imply that disabilities in and of themselves are a burden to society? That a typical child is to be more loved, valued, and wanted? I, like this woman, would say, yes.

Regardless of what we each think about abortion, can we justify aborting a baby for a disability that is not typically desirable? Is to be born with Down syndrome bad? Does having Downs lessen a person’s quality of life? Does the same apply for being born with a heart defect or some other type of genetic disorder? Is the eradication of a disability, any disability, bad or good? Are we helping the population or hurting it?

I, of course, am biased. Some of you know I have a twin brother with Down syndrome, also this entire blog is about advocating for disabilities. So, of course I’d say it’s wrong to abort a baby with Downs. I’m too close to it. Of course others have different opinions and for those people I challenge you. If we look back at the Nazis, I think everyone would agree that the attempt at eradicating Jews was horrible. Why do we justify it when it comes to disabilities? I can assure you people with disabilities are not any less valuable or have lives any less fulfilling than the rest of us. Their lives may be different and fulfilling in ways that we do not think of. We think of success as having a stable job, with a healthy family, but there are variables. Success looks different for everyone. For my brother a fulfilling life is doing a jigsaw puzzle, watching The Walking Dead, irritating our father, and giving 50 hugs a day to our mother and that sounds pretty good to me.

There are times of course where I wonder what his life would have been like had he been born typical like me, and sometimes wish he could have the typical young adult experiences, but at the end of the day, I , nor my family, would have him any other way and I truly wish other people would feel that way about people with disabilities.

Citations:

“Facts about Down’s Syndrome and Pre-Natal Screening in Iceland.” Go to Frontpage, 26 Mar. 2018, http://www.government.is/diplomatic-missions/embassy-article/2018/03/26/Facts-about-Downs-syndrome-and-pre-natal-screening-in-Iceland/.

Gottfreðsdóttir, Helga and Kristín Björnsdóttir. “‘Have You Had the Test?’ A Discourse Analysis of Media Presentation of Prenatal Screening in Iceland.” Scandinavian Journal of Caring Sciences, vol. 24, no. 2, 2010, pp. 414–421., doi:10.1111/j.1471-6712.2009.00727.x.

Quinones, Julian and Arijeta Lajka. “‘What Kind of Society Do You Want to Live in?”: Inside the Country Where Down Syndrome Is Disappearing.” CBS News, CBS Interactive, 14 Aug. 2017, http://www.cbsnews.com/news/down-syndrome-iceland/.

McMahon, Sara, et al. “Fact Check: No, Iceland Is NOT Systematically Eradicating Down Syndrome.” Icelandmag, icelandmag.is/article/fact-check-no-iceland-not-systematically-eradicating-down-syndrome.

Proud to be an Aggie!

Great news has come to light and I am only just finding out about it, and as usual, am late to the party. Aggie ACHIEVE is a new program designed to give students with intellectual and developmental disabilities the full college experience!

Texas A&M Today’s website states, “students will live on campus, participate in classes and serve in clubs and organizations.”

The students will also have Aggie ACHIEVEmates who will help integrate them into college life and be a companion to help them with building good study habits, being a lunch buddy, and helping with coursework, as a few examples.

This is so exciting! At ULL where I got my bachelor’s degree, we had a similar program called the Life Program. I’m so happy to see that this movement of inclusion is gaining traction and makes me proud to be an Aggie!

*Update*

Just a quick update: I met my mentee who is legally blind at orientation and it was amazing seeing the professors who are so willing to go above and beyond to help her get the correct resources she will need for her classes this year. I will help her as much as I can as well, however we have such knowledgeable professors and staff who have expertise in what she will need. This also makes me proud to be an Aggie!

Gig’em!