Individuals and families who are impacted by disability, whether at birth or through sudden onset, need time to process the effects of the disability in their lives. Disability brings real losses and profound changes to daily life. Loss of sight impairs the ability to walk across a room. A stroke can produce a personality change, and epilepsy can result in losing the ability to drive.
Adjusting to disability involves altering dreams of what life will be. A diagnosis of autism may cause a dad to grieve lost dreams of his son following in his career footsteps. Early onset dementia may shatter a couple’s dreams of enjoying their retirement years together. Adjustments require time and space to reorient life to new realities, such as frequent medical appointments, new therapies, and increased personal care needs.
Understanding how families process the impact of disability is very helpful for those who are walking alongside them. At times, we may not understand why a family living with disability makes certain decisions or reacts in certain ways. We must remember one important reality of disability: its ongoing, lifelong impact requires continual adjustments. Grieving is not a one-time event, nor is it the only avenue of processing disability that leads to acceptance.
The Process of Cyclical Grief
Cyclical grief is a helpful model for understanding how families make steps to embrace disability, accept its effects, and arrive at a “new normal.” In “Models of Linear and Cyclical Grief,” 1 Ralph Worthington illustrates recurring stressors that require ongoing adjustments to living with disability.
A grief-provoking event might be a missed developmental milestone, a new medical complication, or even seeing a child’s peers get married. These may not seem large to others, but such events shake up family life and stability. Upsets in a family’s equilibrium highlight the losses they experience.
Emotional stability often disintegrates. Some families may establish a new state of normalcy following a short period of sadness and anger. A loss to others may result in more prolonged adjustments, particularly when there is depression. There is no timetable for how quickly families move in and out of each stage of grief. Often the time that it takes a family to achieve stability again is based on the size and importance of the events and how long the family has lived with disability.
Processing Grief as a Christian
Disability reminds us that we are not in control. As Christians, we must seek God in the process of adjusting to change and achieving a new normal. In dealing with shattered dreams and a life we did not plan, we find hope in our sovereign God who has ordained our steps and sustains us each day. We may wrestle with the new realities brought by disability, but at the end of the day, we can embrace the fact that God uses every event in our lives for our eternal good and his glory.
What Worthington’s cyclical model of grief lacks is the power of a loving, sovereign heavenly Father, the fellowship of the Church, and the support of committed friends. Christ calls us to bear one another’s burdens. (Gal. 6:2) Families that are enfolded into churches and have others patiently walking alongside them as they process the effects of disability come through their trials much stronger than others without similar supports.
Processing Grief with Others
When you come alongside a family processing the impact of disability in their lives, follow Paul’s instruction in Romans 12:15 to “…weep with those who weep.” Even families who have accepted disability in the past may have new experiences that cause them to reenter periods of grief. Be prepared to reenter those periods with them.
Seek to understand deeply what they are experiencing, but not so you can offer solutions. Offer them your presence to process disability together as a reminder of God’s presence and sovereignty over disability and its impact in their lives. Generously give encouragement and hope as you walk together on the path to acceptance of disability, one step at a time.
For further reading on coming to terms with new realities of living with disability and the path to acceptance, see Same, Lake, Different Boat: Coming Alongside People Touched by Disability by Stephanie O. Hubach in paperback and the DVD series.
1 Worthington, Ralph C., “Models of Linear and Cyclical Grief,” Clinical Pediatrics 33, no. 5 (May 1994): 297-300.