In honor of World Down Syndrome Day, we chatted with Charlotte Woodward (she/her), education program associate at National Down Syndrome Society, about the common chromosomal disorder that more than 6M people have, including Charlotte. Here, she talks about her role at NDSS (who released this kick*ss vid you might’ve seen), the health legislation named after her, and facts and misconceptions about DS.

What do you do at NDSS?
I have my hands in different areas and wear many hats. Some of the things I do are support education-related legislation (like keeping all students safe), give speeches and presentations on things like inclusion, and create a ton of resources for many stakeholders, which include parents, self-advocates, educators, etc. I also have a federal legislation named after me called the Charlotte Woodward Organ Transplant Discrimination Prevention Act.

How did that legislation come to be?
Not only was I born with Down syndrome, I was also born with a congenital heart condition, which is common in 50% of people with Down syndrome. As I grew, my heart couldn’t keep up with the rest of my body, so I would have fainting spells and collapse. My doctors decided I would be a great candidate for a heart transplant, which led to four open-heart surgeries.

Now, they could’ve easily denied me a heart because I have Down syndrome. But, they looked beyond my Down syndrome diagnosis and saw me for who I am. I’m proud to say I finally got my heart transplant on January 30th, 2012.

We’re so happy for you, Charlotte! Now, we’ve heard multiple terms be used to describe Down syndrome. What terms should we actually use and which should we avoid?
I always advise to use people-first language as it gives people with Down syndrome that feeling of belonging, respect, and being included. But obviously you should avoid the R-word at all costs, as well as other language that is derogatory. For example, Down’s child or Down’s. [Newsette note: More info on this topic can be found here.]

Are there different types of Down syndrome?
There are three types of Down syndrome. The most common type is Trisomy 21, which is what I have. What that means is that people with Down syndrome have an extra copy, or a partial copy of the Trisomy chromosome in their DNA. Another type is known as Translocation Down syndrome. That happens when, again, a full or partial copy of the transverse chromosome attaches to another chromosome. And finally, there’s a rare kind called Mosaic Down syndrome.

We’ve also heard that a Down syndrome diagnosis can be evident during pregnancy, but that’s not always the case. How else is a diagnosis determined?
There are certain characteristics that most people with Down syndrome have. One of them is a palmar crease. It’s a straight line crease in your palm that goes across. Not everyone with Down syndrome has it, though. Then there’s lower ears and almond shaped eyes, as well as a flattened nose due to a missing nasal bone. If doctors are seeing multiple of those characteristics at birth, it might prompt them to do some testing. Also, having heart conditions like I did.

What a lot of people don’t realize, though, is that people with Down syndrome really just resemble their family members, not only those certain physical traits related to Down syndrome.

What other misconceptions would you like to debunk about Down syndrome?
There are so many out there that it’s hard to tackle them all. I do want to debunk that segregated special programs are the only option for people with Down syndrome. I mean, look at me. I graduated high school with a general diploma, went on to Northern Virginia Community College and graduated with a degree in General Studies, and then transferred to George Mason University and graduated again with a degree in Sociology with a concentration in inequality and social change. Of course, not everyone with Down syndrome can do that and might not want to.

I was able to do all those amazing collegiate things because I was given the chance and opportunity to access the general education curriculum in my high school. At that time, the program director of the dedicated special education program wanted to put me in that program, so I had to advocate for myself to get into that general education program because I knew I had a right to that.

Another myth is that we can’t form close, interpersonal relationships leading to marriage. I’m proud to say that I now have a boyfriend, Zack Gottsagen from the movie The Peanut Butter Falcon. The last thing I’ll discuss is the stereotype around people with Down syndrome always being happy. People with Down syndrome experience every emotion that every other human being does.

Is there anything else you’d like to share?
I like to tell everyone to look beyond our disability diagnosis of Down syndrome and see us for who we are: people with feelings, wants, desires, and dreams. We’re all more alike than different, so just include us. There’s also this documentary called Crip Camp that is a must-see. It talks about the Disability Rights Movement, how it got started, and all the struggles that people with disabilities had to endure as well as their eventual successes.