Grey’s Anatomy’s Caterina Scorsone On Being A Mom And Spokesperson For The Global Down Syndrome Foundation

In honour of Down Syndrome Awareness Month this October, we spoke with Grey’s Anatomy star Caterina Scorsone (Dr. Amelia Shepherd) to discuss her ongoing advocacy for individuals with Down Syndrome in partnership with the Global Down Syndrome Foundation (GLOBAL). She has supported GLOBAL’s Be Beautiful Be Yourself Fashion Show every year in Denver, and the show this year took place on October 18th and included advocates and celebrities like Jessica Biel and Jeremy Renner.

Caterina’s passion and purpose are deeply rooted in her family, including her 8-year-old daughter, Pippa, who was born with Down Syndrome. Since Pippa’s birth, she has become a vocal advocate for people with disabilities, using her platform to challenge stigmas, promote acceptance, and highlight the importance of inclusion. Through her work with GLOBAL, Caterina is helping to amplify the voices of families and individuals, while raising awareness of the need for more research, medical care, and advocacy.

Tell us about your work with the Global Down Syndrome Foundation.

Finding them was an absolute moment of: this is where I can be active and get information that is not readily available from the mainstream medical community and books on Amazon. It’s a place where they were privately fundraising for research into Down Syndrome and actually creating research that would help us understand that it’s not a disease, it’s a condition that has a lot of manifestations.

Down Syndrome is a huge spectrum, and because of the extra chromosome, those with Down Syndrome tend to have certain challenges. GLOBAL was like, let’s talk about that: what are the challenges? What is causing the challenges? And what can we do to support people with Down Syndrome and their families so it’s not so challenging? It’s about looking into the causes of the challenges from a medical perspective and approach. This is the way you would approach any physical challenge a typical person would have.

What I discovered blew my mind: Down Syndrome is actually an autoimmune disorder and was recently reclassified as such. If you treat the autoimmune condition, a lot of the symptoms of Down Syndrome are resolved. Big pharma isn’t funding those studies. It’s about approaching Down Syndrome as you would approach any other condition and putting money into enhancing the lives of these fully valid people. The experience with GLOBAL has been awesome.

You received the Quincy Jones Exceptional Advocacy Award in 2020, That must’ve meant a lot.

It was a massive honour and very humbling. To me, it felt aspirational – I felt so honoured to receive it that it made me want to step into the role of advocate and activist even more fully, so I could earn that honour.

I think what’s important for people who want to step into advocacy is to know that you’re never going to feel totally prepared and flawlessly articulate. You just have to start and be humble enough to get into situations where you didn’t find the right language, be accountable for that mistake, and learn what you need to know.

Tell us about your daughter Pippa.

She’s my middle child (of three), she’s eight years old, and Pippa is the rockstar of the family. She’s super into performing, and last year at school, she got up on stage for the school talent show and performed “Defying Gravity”. And she just got into KPop Demon Hunters.

What has she taught you? How has she made you a better mom?

Having Pippa was such a massive paradigm shift. It really revealed to me all the inherited assumptions I had about parenthood, what our role is as parents, and about disability, like what disability actually is. As I was starting to articulate being a parent with a kid with a disability, I would try to soften it or use euphemisms for the word disability. But there’s nothing wrong with the word disability or having a disability—all you’re doing is describing someone’s physical challenges, but in a context. I saw that disability wasn’t just located in the person who is disabled—it’s a dynamic conversation between a person’s body and how much our society has decided to support that person in being allowed to participate and be included in the activities we think are important.

I like to give the example: A lot of meetings and cultural events are on the second floor of a building, and we’ve decided, given the measurements of an able-bodied man, that it’s important for them to get to the second floor. So, we decided as a society to invest in staircases—it’s expensive and it takes a while to build them, but it’s important to participate. If we decided that it’s not worth supporting that, and you have to get there by climbing a rope, a lot more people couldn’t make it to that meeting. They would have a disability to participate in that meeting.

Disability is real. Support needs to happen created by the values of the society that encounter the disability. GLOBAL’s focus is on meeting the needs of people who have different bodies or chromosomes. This person might need a ramp or a different kind of clinical trial to get the medicine they need to get healthy. Drop the stigma on the word disability. It’s not a physical or moral failing, and there’s no moral weight to it. It’s a conversation between diversity and the values of our society.

What message would you share with parents who are new to the Down Syndrome journey?

It’s intimidating to learn something you know nothing about, and you haven’t seen parenting with Down Syndrome as often. Parenting someone who is typically abled is as hard or much harder. There’s this steep learning curve about different ways you have to parent those children. Once you learn that, you’ve learned it, and now you have this incredible human being who is going to offer so much experience and perspective that you didn’t have before, and it’s this wildly different and amazing journey. It will open your eyes to the ways our society is structured to make it easy for some and not easy for others. There’s not a single world in which I would ever go back to the limited understanding I had before I had Pippa. Truly, my soul and mind and life and friendships and connections have expanded to such a degree that it’s kinda indescribable.