The Fix, Cure, and Kill Syndrome of Life with a Disability

The Rev. Sue Montgomery
PC(USA) Disability Consultant for accessibility/mobility issues

Over the years attitudes and understandings of life with a disability have changed dramatically. Years ago, children with disabilities were routinely placed in institutional settings. The parents were told to go home and forget the child had ever been born. In the 1950s parents began to stand up to such advice and kept their children home where they were nurtured, educated and loved just as they were. The Deaf Community was the earliest voice to defy standard medical care and to say deafness is not an aberration to be fixed or cured. The Deaf Community goes so far to say that deafness is not a disability. Instead, deafness is a linguistic minority and as such is human diversity. Deafness is as integral and as natural to a person’s identity as their DNA.

The larger disability community has learned from the Deaf Community. No longer are people living with disabilities looking for ways to take our disabilities away or hide them so that we can “pass” as normal people. The emerging consciousness and affirmation of life with a disability is a radical change. Disability is no longer “a problem” that sets us apart from others. Disability is no longer something that takes us from doctor’s office to doctor’s office searching for a cure or a fix. Instead, disability is what it is, a part of who we are, and as such, for the first time disability is positive. No one denies that living with a disability can be difficult, yet like any other form of diversity, disability brings new dimensions and understandings to life.

Religious faith and how faith traditions and understandings are taught play a significant role in the spiritual formation of people who live with disabilities. Again, as people with disabilities begin to explore their faith, not the faith of their parents, teachers, etc., but THEIR faith, new understandings of faith and of God are also emerging. When a colleague’s father died, he was given the task of sharing his deaf father’s instructions for his funeral with the officiating pastor. During the funeral — and at all times — there was to be no discussion that his father, once deaf, now hears in heaven. There were to be no statements that his father was healed in heaven and now heard the birds, the wind, and the ocean. The son went so far as to say, if such statements were made, his dad would rise from the coffin and correct them. The questions of heaven, the resurrected human body, are very real. They tug at our hearts; we question, wonder, and are perplexed by the mystery. At the same time, we project our understandings and wishes for life and the human body onto the image of the bodily resurrection. Ultimately this has a significant influence on how the body of a person with a disability is perceived and valued in life and in death.

Medical care has always sought to enhance and improve life, especially in the presence of illness or disability. The escalating technology that enables surgeons to repair injured joints, treat traumatic brain injuries and perform organ transplants has contributed to the numbers of survivors of traumatic injury and catastrophic illnesses. These medical miracles are at the heart of the drive to cure or fix the human body. The difficulty comes when, due to injury or illness, such miracles cannot be performed. Eyesight cannot be restored when eyes are blown out by a roadside bomb; limbs cannot be replaced when a motorcycle accident severs a leg. However, many make the statement of faith that when they die, they will be made complete and whole, the heavenly body will have the broken limb restored, the missing limb will appear, the disability will be cured and fixed in death. This understanding is always a statement of faith geared to the individual. The difficulty comes in that it is not a universal statement of faith for everyone. This understanding deals a terrible blow and inflicts spiritual abuse and pain on many people who are living with disabilities. Such statements also carry the message that we who have disabilities have more value and are better off when we are dead. The final act of fixing or curing in heaven has more value than our lives here on earth.

During the summer I was riding my handcycle on the bike trail. My cell phone rang. The call was for me to come to the hospital, a member of my congregation had been in an accident. As I was rolling through the hospital hallways one of the physical therapists stopped to talk. Being that I rarely, if ever wore shorts at the hospital, this therapist was focused on all the surgical incisions that my bicycling shorts made quite visible. He looked at me and said: “Just keep telling yourself, the day will come when you will dance in heaven and all those scars will be gone, then you will be made perfect.” His words struck my heart loud and hard. They were upsetting as first of all, I dance in life now; two, I’m proud of my battle scars, they represent twenty years of therapy, surgery, and medical attempts to be fixed and cured; three, I don’t need to be perfect to be loved by God, and four, Jesus was raised from the dead with his scars, why not mine? What was most upsetting is that this physical therapist was demeaning everything about who I am, what I do, and how I live by giving my life value only in heaven—in death—when my disabled body was made perfect.

Children also are asking the questions. Children perceive how people value them just as they are. In 2000, Walt Disney Productions filmed the biographical story of Justin Yoder. Justin was born with Spina Bifida and discovered the sport of soapbox derby racing. Because fluid accumulates on Justin’s brain, careful monitoring of his shunt to drain that fluid is critical. After one of his surgeries he has a dream where he is talking with God — who just happens to be a racecar driver. He asks to see heaven. As the clouds part, Justin sees children flying through heaven, in their wheelchairs! It is a moment where the movie affirms Justin, just as he is, in life and in death. In terms of film history, this was a breakthrough moment for children who are learning to live with their disabilities. Disability culture breaks through with the message that disability is not something to be fixed, cured, or killed to give a person value.

Bodily images are significant issues for people living with disabilities. How people with disabilities understand and value ourselves is significantly tied to how disability became a part of life. A person who is born with a disability has a different perspective than someone who acquires his or her disability through accident or illness at a later time in life. How we as pastors develop our approaches to counseling, preparing funeral services, providing grief counseling, and respecting people with disabilities, who are seeking to live abundant lives in faith, is crucial to the development of healthy spiritual formation. It’s time to learn from the Deaf Community. Disability is not an aberration to be fixed or cured. Disability is a form of diversity and has a culture of its own. People do not have to die to find value in their lives. Instead, we need to reclaim the statement of faith, “in life and in death we belong to God.” Heaven will be what it is. It is in the hands of God. The time is now to make the statement of faith that all have value and worth. People with disabilities have a variety of gifts to share. One of the greatest gifts is the value of life itself, as life is, in the present. No one has the right to take that away from anybody—Jesus never did; Jesus reached out and accepted each person who came to him just as they were. Such is the depth of spiritual love and grace.

Sue is one of four consultants who serve the PC(USA) in the areas of vision, mobility, hearing and developmental/cognitive disabilities.