Dr. Miriam Kuppermann

Interview 11/9/23

Background: I am 66, and I'm a professor at UCSF. My whole research program and working in academics is really a result of having grown up with a sister who had Down syndrome and seeing what the implications were for our family. My sister, Shannon, is nine years younger than I am. And I was just so excited when she was born because I had two brothers, and I always wanted a sister. We were super close; we shared a room. And I really, she has been a very positive force in my life. I took care of a lot of things in my household because my mom struggled with depression, but I didn't think much at all about the stresses that were put on me. I think it's really important to check in with siblings, know that they're not carrying all the weight, and see how they're doing with things. But as I said, for the most part, my sister was a positive for my life and our family. She did everything with us. And my parents were good about incorporating her into all of our activities. And then when she became an adult, she started living in a residential program, and she spent weekends with my parents. Now, my father has passed away, and my mother is in her 90s, so I've become the primary caretaker. For example, yesterday, I had a one-hour meeting with the regional center and the various people from her programs to go over all her medical needs and how she's doing. And so she's a responsibility that I'll have, you know, for the rest of my life or her life. 

What was your day-to-day life like while growing up with your sister?

So I spent a lot of time with her, we shared a room. In general, she was a positive presence. And she was very loving with everyone and she brought our family together on some levels. You know, in those days, kids with disabilities weren't necessarily as well accepted as maybe they are now.

How do you think your responsibility for your sister affected you growing up?

I think it created strengths at an early age. I became pretty independent because I felt like my mom had enough on her plate, and I couldn't be demanding her. So I just would take care of things. And I think that learning how to take care of myself. But I think that I was expected to be this quintessential good girl. And I think that that can be problematic too because each child needs to be able to express their full self and their needs. So I think there's sort of an upside and a downside to that.

Is there anything you wish your parents could have known to support you better?

It was difficult because there was so much on their plate. But I do wish that they would have just checked in with me a little bit more. But the expectation in my family was that everything was fine because of the problems that came along with Sharron having Down syndrome. And while things were pretty much good, it would have been nice to have my parents check in with me and perhaps not have had so many expectations. 

What advice would you give to another sibling of someone with a developmental disability?

I'm currently working on a research project, and there are two parents of individuals with Down syndrome and another person who also has a sister with Down syndrome. So this is the first time in my entire life that I have a community of people who share similar experiences related to Down syndrome. And we only meet once a year in Ohio, and it was just earlier this month, but I just love meeting with them. So my advice would be to seek out community and people who are in a similar situation. It just makes you feel not so alone. 

Growing up, we were that family that had a kid with Down syndrome, and I think people really respected my family because we incorporated Sharon so much into our lives. And in those days some people who had a kid with Down syndrome would just institutionalize them or keep them at home all the time. And we were not that way at all. We were very open and inclusive, and I think that people were impressed with that.

What is your relationship with your sister like now?

She lives in Pasadena now. And I go down every couple of months and spend time with her and my mother. She's always really happy to see me and is very friendly and very loving. She has a great sense of humor. I mean, parts of her are just like a sister. Like she will compliment my shirt or my nail polish. 

How has your role as her sibling evolved over time?

Well, I had a lot of responsibility when I was a child and teenager because I was living with my sister, and then once I moved out and went off to college, got married, and had my own household and kids, then I didn’t really have as much responsibility of taking care of Sharron. But in the last decade or two, as my parents have aged, my responsibility has increased again. And it's in a more formal way now because she's a client of the regional center, and I'm her conservator, so they have to meet with me often to make decisions. So, I now have the primary responsibility for the outside of her program.

What are some of your feelings surrounding future planning and being responsible for your sister in the future?

Well, I feel really, really lucky because the program that she's a part of is amazing, and she has been a part of it since she was young. So I feel like she'll be well taken care of when my mom passes away, but I will need to visit her more because my mom goes to see her. But I feel really lucky to have that organization, and I think that another piece of advice I would give people is to be lined up with organizations so you have a community around you. And so it's not just on you by yourself.