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 first of two blog posts. Below are approximate excerpts from their conversation.
On being the first disabled child in their respective families
Christina: And I think it’s important to set the stage by letting folks know that you know, where people with disabilities and both of us were born with our disabilities and we both came from very different backgrounds. You from the East Coast and me from Ocean Side. But I was born with a disability called osteogenesis imperfecta which means I break bones easily and that was something that was you know, growing up not very common. I didn’t meet other people with my disability untill I think I was about 18 years old. Or maybe it was 16 I can’t recall, but you know, I’m a little person and I use a wheelchair full time and I’ve used a wheelchair for as long as I can remember and having a genetic disability we both knew that going into our relationship we wanted to have children but we also knew that we had a 50% chance of passing on our disability to our children. So I think it’s important to talk about our family history, though, because we were the first people born with disabilities in our family and that’s not rare, but I think that’s actually, a really cool thing about our family now is that our children are growing up in families that have parents with disabilities that we didn’t have growing up, so culturally it’s a much different and positive experience for them than it was for us.
Eli: I was born with achondroplasia, which is also a form of dwarfism and like Christina, I was the only person in my immediate family with a visible physical or significant or apparent disability. You know, I, I think for me, what, what really took time to understand was my own identity because you identify, I identified you know, as many things but I was not comfortable identifying as a person with a disability really until I hit college. And, you know, I identified as a little person and I connected with other little people for years growing up, but to identify as a person with a disability is so much different in my opinion because it’s connecting with a broader movement and it’s connecting with a civil rights movement. It’s connecting with people who have fought their lifetimes for for physical access, for societal access for the removal of barriers… and, you know, when I learned that I was part of something bigger than me it really empowered me. That made me, felt like I was part of a community.
On meeting each other
Christina: …when I met you…we almost instantly clicked, I would say. The funniest part was, well, I say that because, you know I tried to get away from you and I played a little hard to get at the beginning, which continuously cracks me up. Because we were sitting at the statewide meeting for work and I remember I had mentioned to a colleague that I was interested in you or I’d wanna get to know you a little bit more and I felt like I was in high school all over again. It was so strange and he tried not to make a big deal out of it, but he did and then I you know, completely freaked out and said, “I have an eyebrow appointment, I’ve got to get my eyebrows waxed. Bye.” [LAUGH] And I took off and left…after we spent time together that first weekend on our first date I completely felt like you would be a great dad.
Eli: I, I was very scared on our first date because I knew that I had liked you. You know, I had liked our phone conversations and I knew you were an outstanding person, cuz I had known you for five or six, five years up to that point and seen you in action in Sacramento, talking in front of thousands of people and beating the drum on advocacy issues and it really amazed me at how down to earth and sensitive you were and how you know, the Christina that I knew through work was really a different, similar but at the same time a very much more subdued Christina in person. And you know, when we started dating on that first date I was really drawn to, I was drawn to how open you were and how honest you were about who you were, what you believed in and about willing to accept me for all my good and bad.
Christina: But I’m so thankful that, you know, we met each other when we did and that we got close so quickly because… the timing couldn’t have been better, because I’m so happy that my mom got to meet you before she died.
Eli: Yeah. That was very special.
Christina: Yeah so, you know, although she didn’t get to see us get married, she at least got to know who I was gonna marry, and I think that was, you know, really important to me. She and I, at that point, still had not talked about having children. You know, I was in my early 30’s at that time, and I just was thankful that she at least met the guy that she knew…she was very proud to see me with somebody like you, and she called you a white collar type of guy, which is the kind of guy she wanted me with, which-
Eli: A good Jewish boy.
Christina: I’m just so incredibly thankful that you know, work brought us together, and that my transition to Northern California brought me to you, so, I think that’s the best thing that could have ever happened to me in my career, and I always thought that, and when we met, we talked about how work was our priority.
And we talked hours, and hours about how hard we work, and how much we’re into the work we do. And, you know, there was nothing that could take us away from that. And I thought, well, you know, having children, we’re still gonna be able to work as hard as we are now without children, but I think for me, that’s substantially changed. And, I never thought I could prioritize something higher than you and work, like I do, Olivia and Sage.
On wanting to be a parent
Eli: Going on the parenting side, I think I always wanted to be a parent but when I experienced a sudden change in my life when you know, I lost my first partner at 28. I didn’t think I was gonna be a parent. I didn’t think that was gonna be a reality for me. It was for me, it was being struck by the reality the disability not only can shape lives but it can shape choices, and not necessarily just voluntary choices. But then, you know, when we started dating and getting to know each other, I felt a renewed sense of optimism around the idea of being a parent and that it was okay to be a parent with a disability and I think for a while I was scared of that going for my experience of losing someone.
Christina: I think you know, I have a somewhat unique experience being the first person with a visible disability born into my family to a teen parent. My mom was only 16 years old. I think I’m also, at the same time, very fortunate for that experience because shortly after I was born. I think it was eight or nine months later, my aunt, who I would consider my second mom, Diane, she had my cousin, Larry. And Larry has Down Syndrome and so I had although we had very, very different disabilities and we certainly had our issues growing up. We often lived in the same house I at least was able to have somebody else with a disability around me and I think that’s really helped me with Olivia, our daughter, because developmental disability wasn’t something new to me. It wasn’t something that I was prepared for, definitely, when we decided to have a baby but I think it’s something that made it easier for me knowing that I had a lifetime of experience with Larry as my cousin who’s more like a brother, but you know, we never talked about me or Larry for that matter having children when we were younger.
And I can’t even recall, anyone, my mother or my Aunt Diane or anyone for that matter talking to me about the birds and the bees. I don’t [think they] as non-disabled people ever thought about me being sexual. So, the thought of me actually becoming a mom one day was probably the furthest thing from their mind. And I can recall the first time that I did have sex and my Mom and I were driving down the road and she said, “Did you have sex?” And I thought to myself, “How in the world does my Mom know?” [LAUGH] …and it was like top secret information because I didn’t know how she was gonna react because we had never had those conversations and I don’t think you know, in my mind, whether she thought I was eventually gonna have a relationship or not.
On being a parent with a disability
Eli: So, what does it mean to you to be a parent with a disability?
Christina: Well I think about all those interviews that I did to find a doctor first that would be supportive and being my OBGYN during my pregnancy, and how proactive I thought I was by going out and interviewing doctors before I got pregnant. And just showing up for my first OB appointment. You know, as a person with a disability, I wanted to make the right choices. And I didn’t want, I felt like I wanted to set everything up. Because you know me, I’m a planner, and I like to plan everything out. So you know, interviewing those first few doctors that were like. Oh my God, you know you have a disability that you can pass on, right? And them saying that they couldn’t support me in becoming pregnant was pretty shocking, given that, you know, we’re talking about 2000 and, what was that, 2011, 2010 that I was doing those interviews, and doctors are still making those sort of statements and stereotypes about people with disabilities. So, when I finally found our doctor, Dr. Marshal. It was like, “Ah, finally.”
Eli: I remember, one of the most significant levels of discrimination that I witnessed, was when we decided we wanna have, we wanted to have children and you were looking for a doctor, and there was a doctor that just refused to work with us because we were disabled, and it really, it, it struck me on a whole another level that, you know we, we’ve come so far in so many ways, but when it comes to a very basic, fundamental right to be happy and to have a family, and to have a sense of place in community, we still have so far to go, to promote the idea that people with all types of disabilities, not just physical disabilities but mental health, HIV, cancer, developmental disability, that we all have a right to have families.
We all have a right to community and there was no experience, there was no experience, more moving for me in my life, than seeing you as a mother. Seeing you as giving birth to our daughter, Olivia, and then, even more than that, seeing you transform into your role as an advocate, and a mom for our daughter, for both of us.
The lack of role models of parents with disabilities
Christina: …then it took us forever to get pregnant and I thought “Well, maybe I’m not supposed to be a mother” and …I don’t have a lot of role models of people with disabilities that have been parents. I have an incredible amount of role models that are just people with disabilities who have done amazing things and that I look up to and respect for a lot of different reasons but I don’t have a lot of role models with disabilities that have children and it was kind of a scary situation, because it was something that I felt like I was gonna be doing on my own and embarking on for the first time for a lot of different people, as well as for us…I run a youth program of youth with disabilities [and] I knew that they were also gonna be looking at me as a role model for, for having a child because if I hadn’t seen a lot of parents with disabilities, it’s not likely that they would have either. So it really meant taking on not only the hard work and commitment of being a mom, ‘cuz that’s my number one job. It… also represented something different in the disability community for me. It represented people looking at us as people with disabilities, as regular folks that can have families too and you know, regardless of if we have disabilities or not, some of us want children, just like anybody else. So that was really important and a lot of I put a lot of thought in thinking about, you know, what having a child would look like to the community.
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.”