Am I my sister’s keeper? Sister Simone Campbell asked that question recently at the Democratic National Convention. Personally, as much as I tend to focus on the broad outlines of policies and laws or philosophize about the true nature of the common good, sometimes it comes down to pretty literal questions.
Over the past few years, as I have watched the Affordable Care Act wind its way through passage, court challenges, and the long process of implementation, my focus has been directly on my older sister, who has an extremely severe pre-existing medical condition that at times disables her and at other times gives her the ability to take care of—with unmatched compassion—her patients at the hospital where she serves as a nurse.
As I increasingly develop in my faith, I am drawn to the extreme compassion that Jesus shows to people who have disabilities. Rather than rejecting them, making them outcasts from society, or assuming some sin of their own or their family has caused their disability, he embraces their human dignity and worth. For this open and embracing attitude, he is subjected to hostile criticism and attack.
His compassion helps me understand my life. When I was in kindergarten, my sister was diagnosed with severe dyslexia. I grew up knowing that my sister learned differently than I did—that while reading came naturally to me, getting through each page was a struggle for her, and that she had many skills that I didn’t have, which enabled her to help me. By the beginning of high school, she had found countless pathways around this limitation and was at the top of her class, along with being the best athlete and a great leader.
But this time also marked the onset of her medical illness. Perhaps because of her earlier experience with dyslexia, she accepted her diagnosis, choosing to fight against it in all the ways she knew how. She accepted that it was a disease that she would have for the rest of her life, sought treatment however she could, and continued to strive to be part of our family and serve our world.
My mother lost her teaching career because at that time, before the passage of the Family and Medical Leave Act, no school would give her the time she needed to take care of her daughter when she needed it most. She went from being a teacher in the local schools to working for minimum wage at a bakery, selling blueberry muffins to her former colleagues, because this job allowed her to take care of her child.
At times when I have been at a loss about how to help and care for my sister, when one more medication or treatment fails, the images of Jesus reaching out to those who are sick and disabled provide great solace for me. My sister’s illness will always be a painful reality in her life and in the life of my family. However, I have a very clear sense of God’s closeness to us, especially during these struggles:
Mark 5: 25-29. There was a woman afflicted with hemorrhages for twelve years. She had suffered greatly at the hands of many doctors and had spent all that she had. Yet she was not helped but only grew worse. She had heard about Jesus and came up behind him in the crowd and touched his cloak. She said, “If I but touch his clothes, I shall be cured.” Immediately her flow of blood dried up. She felt in her body that she was healed of her affliction.
Today, no doubt influenced by my family’s experiences, I am very happy to be a civil rights lawyer where every day I am able to work with families to guide them through the statutory and regulatory complications of our laws so that they can live with greater dignity.
On June 28, as I logged onto SCOTUSblog to find out whether the Affordable Care Act had been upheld, as I anxiously waited for the latest update, I thought about my sister and how our lives would be changed if Obamacare were upheld. It would mean that, at those times when she finds herself too sick to work, she will not have to worry about affording the medications that keep her alive. It would mean that she will never have to leave us and move to Canada (we’re dual citizens) just so that she can get the treatment she needs. It would mean that she will be in a much better position to continue healing the poorest of the poor.
And when the news came through that it was upheld, I felt both joy and relief. I experienced the dissipation of worry that had lurked for 20 years. The weight of knowing that my sister could lose access to life-saving medication at any time (try over $1000 a month) had been lifted.
Of course the Affordable Care Act is not perfect and serious disagreements exist over how it should be implemented. But this act is a huge step forward that impacts millions upon millions of our sisters and brothers, both figuratively and literally, who have preexisting conditions, such as diabetes, cancer, and mental illnesses, as well as those who have been the victims of domestic violence. When Jesus healed people of the common preexisting conditions of his time, he was healing those whom society had ostracized and ignored. In drawing inspiration from Jesus, our society can and must do better.
It is clear why the Catholic Church views health care as an inalienable right. It is a recognition of the dignity of human beings, who live together in families and communities. Our society has a long way to go in this work, but the Affordable Care Act is a great start.