Married couple and disability rights advocates Christina Mills and Eli Gelardin recorded their story at StoryCorps San Francisco on January 3, 2015.
This is the last of two blog posts. Below are approximate excerpts from their conversation.
On the identity of being a parent with a disability
Christina: …[once] I found that we were pregnant… I found myself finding more and more women with disabilities that had children, but had never talked about it and I’m not sure why that is, but I feel like there’s more people in our line of work than we ever knew are parents, but for some reason they just never talked about being parents and for you and I, I think, we talk about being parents all the time. It’s like, our, our identity now.
On disability pride, pregnancy, and prenatal testing
Christina: So, when we got pregnant with Olivia one of the most surprising things during that pregnancy for me, was you know people, we’ve worked in the disability rights movement for, well, I have been in it for almost 16 years now, and you’ve been in it….11 years…As much of advocates we are, we’re, we’re huge advocates, but we also have a sense of disability pride that we put off and we really appreciate and hold close…I hold my disability pride very close to me. So, when the doctors asked us if we wanted to do any type of genetic testing to see if Olivia was going to have a disability, we said no and we didn’t care whether Olivia had your disability, or had my disability, or, you know? She had a chance of having a combination of our disabilities and we didn’t care…as we, as I started sharing that information with people in the community that we work with, I think the most surprising thing for me was, when I did start telling people that yeah, we could tell Olivia has a disability through ultrasounds, that people started apologizing and they surprised me, because I thought, “Oh, my gosh, here I am, I’ve been working in the disability rights movement and talking, empowering youth with disabilities to take pride in who they are and yet, I’m sharing that I’m going to have a baby with a disability that I’m very proud of, and I have people apologizing to me in the same field.”
Eli: I think it speaks to… that challenge of feeling, giving yourself permission to, to have kids, to giving yourself permission to have a family, and to accept that wholly and feel that it’s a right.
On being pregnant with Olivia and her disabilities
Christina: …when we had our ultrasound with Olivia and saw that she had a fractured leg and utero, we knew that she had my disability, but going a little bit further down the pregnancy, we also thought that she had your disability, because her head was getting large, and so our doctor had thought maybe she had both of our disabilities, until we reached about 28 weeks, and then they realized it could be something more substantial, because her brain wasn’t forming correctly and then we knew we had a potential different disability altogether…we knew we had mine, but we weren’t sure if we had yours, and we knew that we probably had something else neurologically going on with Olivia as well. So you know, it was shocking because we were prepared to have someone a baby with either mine or yours, or a combination, but we weren’t quite prepared to have a child with different type of disability, so, I think that’s been like a huge learning experience for us, in so many wonderful ways, and then like you know, she keeps us extremely busy. She’s a very active child. But when we decided to have a second child, when she was only two years old I couldn’t believe how many people thought we were incredibly out of our minds for, for doing it a second time, knowing how much time and energy it takes having Olivia.
On being a parent of a child with multiple physical and developmental disabilities
Eli: What, have you learned from our first child, from Olivia?
Christina: …I’ve learned that we’ve got a lot of work to do in the disability rights movement. Olivia is extremely rare having skeletal dysplasia disability and having a developmental disability that’s, you know, pretty substantial, that there’s not many organizations and services that know how to handle a family first of all, of all people with disabilities, let alone a child with multiple serious disabilities.
So, I’ve learned that I’ve got a lot of work to do as an advocate and that it’s important to embrace disability the way it is, no matter what it looks like, or how it looks like, or how it is. Olivia has taught me to be extremely patient. I didn’t think I had the amount of patience needed for Olivia, but she’s taught me how to be extremely patient. She’s just given me so many more reasons why I need to work harder to create disability equality, and equality for all people, regardless if they have disabilities or not, but people who are from underserved minority communities. I mean, Olivia is, just given me a reason to work that much more.
Eli: Olivia has taught me that, once again, you know, the perceptions and the boundaries that I put on myself or on my life really are only just that. They’re, limitations or they’re barriers that I put on, and what Livy, what I learn everyday from Livy is that, you can not operate in a free space and she has absolute truth. There isn’t a filter of what she should be or what she can or cannot do. She does what she wants to do and while she doesn’t communicate in a verbal sense she communicates through movement and she communicates through texture and through spinning and it’s no less communication than any other form… I think the boundaries that I put on myself have really changed because of our daughter, because I see that there’s much more spectrum, there’s much more freedom than, than we allow, and I allow myself.
On having a second child, Sage
Christina: You know, I think Olivia’s taught us that we can do anything, and that’s why we had the courage to have a second child and Sage has been, you know, such a different baby but such the balance we needed in our life. And although Sage is only six months old, he has already been such an amazing brother and an amazing son… when we found out we were having a son for the second time, I think that’s the third happiest day of our lives together, you were so ecstatic to have a son and every day I watch you with Sage and you guys are like bosom buddies. You just love spending time with Sage, he’s, you know, your golden ticket. [LAUGH] And he brings so much joy into our family and although we knew we wanted a second child no matter what when we had Olivia. Sage has just been an amazing addition to our family and I’m so happy that we had the courage to do it again regardless of what everyone thought and said about it.
On the importance of storytelling
Christina: And I think, you know, for us, storytelling is really important, and we value it so much and we’re always sharing our life. With our friends and colleagues and people online that we hardly know, because we want to make sure that other folks know that they have a story to tell and that it’s okay to be who you are, whoever that may be and I think it’s important that we leave that kind of legacy to our children too, that, you know, they be proud of who they are that they were brought into a world on purpose and were so expected and, you know, they were never a surprise. They were so, so, so planned and I just hope that they continue to tell stories like we have and that they care about family as much as we do because, you know, we embrace our family and spend a large amount of time with even our extended relatives and I think that’s really important because we’re not only doing it because we love them, but we’re also educating them and [and in turn they are] educating others and I think that’s always a part of our life and I’m okay with that. I think it’s a good thing and it’s positive and it’s who we are. So, I appreciate that and I think our kids are going to appreciate that too as they get older.
Eli: What do you, what do you want them to know about being parents?
Christina: Well, if they make the decision to be parents I want them to know that we support them. If they don’t want to be parents, we support them too, but I think they are so fortunate and I don’t know that they’ll ever understand how fortunate they are that they were born into disability culture and that they have very accepting parents and parents that understand and can relate to them on a very different level than, than we had experienced so I think they I hope they don’t take for granted what they were brought into and that they can always come to us when they have questions. And especially you, as the wise one, that you can always give them advice that will help them determine what their, their goals are.
Eli: I would tell them both that whether they choose to have their own children, whether they adopt children, whether they partner with someone who already has children or whether they choose not to have children at all that….Find themselves in a sense of family and a sense of community with others that it’s so important to, to share, to share a sense of belonging, to share a sense of place and, and to be part, to, to pass that story on. To pass your experience on and to learn and listen.
Christina: Well, I just want you to know how happy I am that we did this together. And that I’m so proud that you’re my husband, and Olivia and Sage’s dad and that we have a beautiful family with so much love, so much love and energy and everything exciting, exciting to look forward to in the future. Thank you.
Eli: Thank you honey. I love you and I’m grateful for every day that I have you and I have your kiss.
Christina Mills is the Deputy Director of the California Foundation for Independent Living Centers and has been an active member of the disability rights community since her involvement in the California Youth Leadership Forum for Students with Disabilities in 1995.
Born in San Diego, California, Christina began her post-secondary education while simultaneously pursing her career in Independent Living. In 1995 she was selected to attend the California Youth Leadership Forum for Students with Disabilities (YLF) and immediately found her true passion — disability culture, history, and advocacy.
In 1999 she began working for the Independent Living Center of Orange County, the Dayle McIntosh Center for the Disabled. For over five years, Christina held various positions at the San Diego Independent Living Center, Access 2 Independence. In 2001 she was appointed by the California Governor to serve on the State Independent Living Council. She served seven years on the council and succeeded in getting youth with disabilities more visibly recognized by the larger disability community. In addition to her commitment to the SILC, Christina also served as chair of the National Council on Disability, Youth Advisory Committee and was a Project Consultant for the National Family Voices, Kids as Self Advocates (KASA) program.
In 2006 Christina left San Diego to work for the California Foundation for Independent Living Centers as the Statewide Community Organizer of the Systems Change Network. She lead the organizing and planning of Disability Capitol Action Day for six years and is a co-founded CFILC’s youth organizing program, YO! Disabled & Proud.
She has provided expert testimony to the National Council on Independent Living, the California Women’s Commission, the California Legislature, the National Council on Disability, as well as other local and statewide committees.
In 2008, she was awarded Regional IX “Advocate of the Year” by the National Council on Independent Living and awarded in 2011 the California Coalition for Youth Sue Matheson Mentoring Award.
Christina is most proud of her recent accomplishment, becoming a mother. She has shared many of her parenthood experiences by writing AT Network blog postings on adaptations that both she and her daughter use to maintain their independence.
In her spare time she enjoys traveling with her family, scrapbooking and taking photos of her daughter, son, and two fur babies.
Christina Mills on Twitter: @Momvocatemills
The California Foundation for Independent Living Centers (CFILC) is a disability rights organization made up of 21 Independent Living Centers in California. It’s mission is to increase access and equal opportunity for people with disabilities by building the capacity of Independent Living Centers.
Learn more about their four Programs and Coalitions: The AT Network, Digital Access Project, Disability Organizing Network and Youth Organizing! Disabled and Proud: http://www.cfilc.org/about/programs-coalitions.php
Eli Gelardin serves as the Executive Director of Marin Center for Independent Living (MCIL). Mr. Gelardin has over a decade of experience working in disability services and advocacy. During his leadership at MCIL, the small grassroots organization has grown to an annual budget of approximately $900,000 with 11 staff serving over 800 individuals with disabilities each year. In 2013, MCIL was recognized as a California Center of Excellence by its peers.
Mr. Gelardin also serves as the co-creator of QuickMatch.org , an innovative web application that blends the high tech capacity of an online personal care registry with the high touch services of local non-profit community-based organizations. QuickMatch.org was recently featured as a model for homecare innovation at the National Home and Community Based Services Conference in Washington DC.
Mr. Gelardin translates his personal experience as an individual with a disability into his professional roles. He currently serves as the Chair of the California State Independent Living Council, Chief Financial Officer of the Mission San Rafael Rotary Foundation and board member of the California Foundation for Independent Living and the World Institute on Disability.
Mr. Gelardin lives in the Bay Area with his wife Christina and their two children. They are a multigenerational disabled and proud family.
Eli Gelardin on Twitter: @EliGelardin
The Marin Center for Independent Living promotes the independence of people with all types of disabilities of all ages in Marin County, California. Their mission is:
“To assist persons with all types of disabilities to achieve their maximum level of sustainable independence as contributing, responsible and equal participants in society.”