One year ago today, the world lost Carrie Ann Lucas. She was a disabled mother, activist, attorney, and dear friend of the Disabled Parenting Project. On the one year anniversary of her death, DPP co-founders Erin, Kara, and Robyn share their reflections.
I remember Carrie Ann’s photography. She had an eye for beauty and she captured so many beautiful images that we were fortunate that she shared. I admired that Carrie Ann pursued camping. I love nature too, but being out in it can be hard from a disability standpoint. I loved how she figured out how to make it happen for her family.
I’m at a conference this week in another city and an ad came on the TV in my hotel room for United Health Care. I immediately felt rage and then profound sadness. Carrie Ann died because our health care system is a dumpster fire. Profits are put before people. Profit has no place in health care. Carrie Ann was an attorney, and she used her legal acumen to advocate for disabled people, especially disabled parents and their children. I’m a health care provider and on the anniversary of her death, I am reminded that I must use my role as a professional to advocate for disabled families in health care. Carrie Ann would have wanted us to continue to fight! She’d tell each of you to get out and vote. Use your voice to promote change, so Carrie Ann can rest in power.
There are so many reasons that I miss Carrie Ann. Professionally, she was top of mind when the most complicated disabled parenting situations arose. She believed every parent, every child, and every family were worth her incredibly valuable time and incomparable expertise. Personally, Carrie Ann was a role model for me, especially in the realm of adoptive parenting.
Carrie Ann embodied why disabled parents aren’t just potential adoptive parents but can actually be exceptionally well-positioned for this role. With so many children with disabilities in foster care and institutional settings across the world, adoptive disabled parents are able to offer intentional, cultural transmission. Teaching self-determination and self-advocacy to all children is an important value of my parenting but its value for children whose lives have largely been characterized by a lack of control is even more significant.
Carrie Ann was a truth-teller. She was one of the first to confirm my inkling that adoption wouldn’t lead to “catching up,” and that as hard as that can feel on some days, it’s OK. Carrie Ann was an adventurer. She stopped by Cincinnati on one of her cross-country treks and visited with our family on a hot summer day. This gift of time and connection is one I cherish deeply. I am so grateful for the lessons Carrie Ann left us and yet still angry and hurt that she was taken from us so unjustly.
Carrie Ann died because of a broken health care system that does not value the lives of disabled people. Leading up to her death, Carrie Ann experienced a rapid decline in her health after her health insurer denied her needed medication. Had the insurer approved of this medicine, Carrie Ann would still be alive. This cannot be forgotten.
I first met Carrie Ann in 2011 while writing the National Council on Disability’s report, Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children. Since then, I worked closely with Carrie Ann on matters related to the rights of disabled parents. Together, we trained judges and attorneys across the country and consulted on many cases. Carrie Ann is single-handedly responsible for countless disabled parents being able to raise their families. She is also responsible for Colorado passing comprehensive legislation aimed at protecting the rights of disabled parents. This law will be re-named in her honor.
As two of only a handful of attorneys that was knowledgeable about both child welfare and disability law, I cherished our time working together. Undoubtedly, Carrie Ann’s brilliance far exceeded that of most (including me) and will be greatly missed. I truly appreciate the wisdom she imparted on me. While I will never be nearly as proficient as Carrie Ann was, I do hope to do my part to make sure her legacy continues.
Although I valued Carrie Ann as a mentor and colleague greatly, it was her friendship that I most welcomed. While we did not get to see each other often, we kept in touch frequently and I loved being able to catch up in person when we got the chance. I loved following her on social media and seeing the amazing adventures she took with her children.
Carrie Ann was the essence of greatness. She fought the good fight, striving to eradicate injustices. Carrie Ann left the world a better place, and I will be forever grateful to her. As we honor her life, let us commit to continuing the fight for equality.