His Hands and Feet, but What if We Can’t Go There?

Sarah Steele (1984-2017) with her father Rick Steele at an SPU event in 2007

My mentor Dr. Rick Steele at SPU, is a professor of moral and historical theology. For several years he acted as my second father until we outgrew the relationship, but I still write him once a month to let him know what is new. He’s a great guy. He was able to be such a wonderful father figure to me because he was such a wonderful father to his first child, his daughter Sarah Lynn Steele, who loved to sing and work with handicrafts and who collected keychains from around the world, which friends would give to her after they returned from abroad. I have one of them from her funeral in 2017 on the hutch in my entryway. I think of her often with love. Rick and his wife Marilyn have two other wonderful children, Mollie and Jonathan, but I don’t know much about them. This post is about Sarah.

Sarah was diagnosed very young with a progressive musculoskeletal disease that locked her arms at the age of 5 (as seen above in the picture) and restricted her lung capacity. Her Christian witness inspires me as a person with a disability and I wanted to share about her with the class. The daughter of professor of theology father and an ordained minister mother, she excelled at languages and was able to read both Hebrew and Greek and studied the Bible in the original languages. She participated in her church choir and was driven weekly by friends to be able make rehearsal. Sarah excelled at putting people at ease and was a bright spot in the lives of many, and even though I never met her, her Christian witness as a woman with a genetic disorder, inspired my own witness as a woman with a serious mental health condition, which at several points of my life, was perhaps just as debilitating and threatening to my own life as her condition was to hers.  

When I think about community as a person with a disability, I am both challenged and inspired. I am challenged when I think of community in terms of what most people imagine with the word community, namely a packed church room or seminary classroom, long-term friendships and fellowships with relaxed boundaries, consistency, trust. All of these are the hallmarks of Christian discipleship, and mission grows out of them. Most of the time. But it is also important to remember that even those of us who cannot do this are still made in God’s image and that we can be missionaries through our witnessing of Christ’s love in the midst of disability and stigmatization. Professors like Dr. Steele remind students like me of this fact, and my prayer is that people embarking on Christian missions would develop an inclusive ministry as they envision what being Christ’s hands and feet really entails.

If missions is more than a given committee that meets on a certain night of the week, if missions is more than a budget, but rather, as our recent church scholarship tells us, is a hermeneutic by which we should measure all aspects of scripture and the life of the faith community, then we would do well to remember that as “sent” people, some are sent by staying healthy and witnessing from where we are located. Particularly those of us who aren’t fully mobile, either due to mental, emotional, spiritual or physical challenges.

When we think of missions, we often think of movement. My church’s mission team is #GoSendGive. But really, missions is the posture of the heart that makes an impact on the church, her witness, and her ability to bring about the coming kingdom. And missions is also about being Christ where Christ wouldn’t be otherwise, which can be with the differently abled. As Christians, we are to be a living sacrifice.

Sarah is the best missionary I have ever known. I will never forget her, and her organization for people with her disability spans the globe and she was connected to many with her disease, as well as with the able bodied. Maintaining connection with the world in the midst of hardship such as what Sarah faced or what I faced before finding the right medicine, is missionary work. Mission work with a disability is the embodiment of the most sacred theology I know. God’s love shines still more brightly and noticeably when it comes out of darkness that cannot fully be conquered in this life, but that has not kept our light from shining.

Sarah Lynn Steele was born on December 23, 1984 in Milwaukee, Wisconsin. She died on November 14, 2017 in Seattle. She was a graduate of Lake Washington High School (2003) and Seattle Pacific University (2007), and an active member of the Lake Washington United Methodist Church in Kirkland. She was born with a rare musculoskeletal disease, fibrodysplasia ossificans progressiva (FOP), and over the course of her life suffered from other illnesses as well. Toxic shock syndrome and respiratory failure claimed her life. She was the beneficiary of extraordinary medical care throughout her life, and her family wishes to express both gratitude for her many caregivers and outrage at a national healthcare system that denies to so many the care that Sarah enjoyed. Despite her sufferings and limitations, Sarah’s joy in life and optimistic outlook were undimmed. She was an active member of the International FOP Association and had friends all over the world. She had a lovely voice, a sweet smile and a radiant, outgoing personality. She loved to sing, and was a member of the LWHS Concert Choir, the SPU Women’s Choir, and the LWUMC Chancel Choir. She also loved movies, theater productions, detective novels, shopping, handcrafts, keychain collecting and chocolate. And she herself was loved by all who knew her. Sarah is survived by her parents, Richard Steele and Marilyn Hair; her siblings, Jonathan and Mollie; aunts Nancy Hair, Sally Hair (Brian Reid) and Carolyn (Rob) Thomas; and several cousins.