In the history of our disability rights movement, there have been many lives who changed our lives through the lessons of their personal story, and the power of their advocacy. The non-disabled world knows little to nothing about the unsung heroes of our movement, the ones to whom we owe our healthcare rights, our parental rights, our right to share our humanity without having to justify our right to live. Carrie Ann Lucas was one of those fierce and fearless activists whose whole life was dedicated to the disability community, personally, professionally, and at every level. Carrie Ann Lucas’ life and death were about fighting for disability rights. Her untimely death gave a real face to the realities of medical abuse and the oppression disabled people face to this day. Her legacy of advocacy is one the community she loved will keep alive by moving forward, by sharing her story, by celebrating how she lived, by not forgetting how she died. The disabled lives she saved through her advocacy have immortalized her memory.
As a disabled parent, Carrie Ann Lucas was a force, a presence, and a voice. She broke the mold of what society expects a mother to look like –starting with the fact that the first thing society expects of disabled people is for us to not be parents. Carrie Ann not only was an amazing mom, but she was also an amazing mom to kids with various disabilities for whom she was providing a safe childhood immersed in the power of positive disability identity and a connection to the true meaning of community. As a mom, she was also there for other disabled moms, using her professional power as a lawyer to fight for the parental rights of other disabled parents, sharing their stories, making sure disabled parents were heard.
As an activist, Carrie Ann was fearless. Her advocacy will be remembered for many things and many actions, but especially so, for the time she refused to turn on her very elaborately complicated wheelchair during an ADAPT action to save Medicaid, forcing the cops to struggle for hours as she refused to move. It was Carrie Ann’s passive protest which sent the loudest message that day. It is because of her and her love for other disabled people that the advocacy moves on even after losing her in such a devastating way.
Carrie Ann Lucas should not have died –not the way she died. Not at the hands of ableist insurance regulations that denied her the right to live. Sadly, Carrie Ann’s story is not unique. She knew this, and as she fought for her life, she was also fighting for the lives of thousands of others whose situations are similar to hers. The lives of disabled people are always in danger as the rules and regulations of the medical-industrial complex deem disabled bodies and disabled lives disposable and unworthy. Carrie Ann Lucas died because her insurance company denied her access to the right medication. She died because her life as a disabled person was not considered valuable enough to save. Immediately after her death, disability activists around the nation mobilized, organized, shared Carrie Ann’s story as we mourned and grieved and tried to make sense of what had happened.
Born out of this tremendous grief and out of the anger caused by her unjust death, disability justice advocate Mordecai Cohen Ettinger, along with others in the disability community created the Carrie Ann Lucas Solidarity Campaign which led to the creation of a Medical Abuse Hotline and the continuous sharing of Carrie Ann’s story. Few disabled people are aware of how much medical abuse takes place. We have been so conditioned to trust the medical professionals, the people in white, the people in power, that we become disoriented and confused and unable to recognize medical abuse as the abuse it really is. Carrie Ann’s death became an advocacy portal to raising awareness about the horrors and injustices taking place in the lives of so many people, but especially so, in the lives of disabled people. Carrie Ann’s solidarity campaign is one that calls all of us to recognize the value of our disabled lives. It is a campaign that reminds us to fight with everything we have because our lives really do depend on it. The nondisabled world will let us die. The nondisabled world wants us to die because they refuse to see our worth. Carrie Ann is a reminder of our worth, our power, our fierce will to live. She is missed. She is missed every day by those she loved, by those who loved her. She is missed by the movement that now carries her torch of relentless activism as we refuse to give up or give in to the systemic oppression that took her from us.
Carrie Ann Lucas, you are loved. You are missed. You are remembered.
Thank you for your advocacy. Thank you for your life.