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A Unique Mode of Grief
A Personal Perspective

Throughout the past three and a half years I spent as a graduate student of thanatology, I have come to learn a great deal about life, death and healing in the face of loss. I also learned many things about myself, including what kind of role I hoped to take on within the field.

From the start I knew I wanted my education and future career to commingle with one of the largest parts of my identity—living with a physical disability. Though I didn’t know exactly how this would look, these two passions eventually combined to create a desire to better understand the ways in which having a disability can influence the grieving process. Initially, I researched disability as a status capable of causing living losses which require adaptability, resiliency and fortitude to overcome. These types of living losses can be the result of, or exacerbated by many factors, including but not limited to: severity of the person’s condition, co-morbidities, lack of resources, support or acceptance, isolation, lack of financial stability, and the experience of stigma and discrimination. While living losses can certainly merit a grieving process all their own, this angle quickly began to take on a life of its own and grew unmanageable to pursue while completing my graduate studies. Given the countless, varying degrees and types of disabilities now more than fifty-four million Americans are currently living with, each diagnosis presents individuals and their loved ones with a unique set of challenges which are capable of resulting in the development of individual coping mechanisms and grieving patterns. Given the immense variation and detail in each diagnosis, I sought to simplify my focus, and eventually began to approach this topic from an all-together different angle.

The opportunity to simplify and shift my focus presented itself during an internship I took part in at an area children’s hospital, working within their bereavement program. Not long after beginning, I came to learn that none of the grief resources which were offered catered specifically to the needs of those who had taken on a caregiving role for the deceased child with a disability (or other chronic medical condition). I could hardly believe there was such a large population of parents and families being overlooked! After voicing this concern to a few friends in the field, I was offered a response (on more than one occasion) which only served to confuse me further: “It doesn’t matter that the child had a disability—only that they died. That is where the focus of your efforts should be.”

Why then, I wondered, is the mode of death so important in thanatology, but not a person’s mode of grief? Resources abound for caregivers of the elderly who are grieving, but so few of these stress the complex role disability status plays in the grieving process — for caregivers, parents, siblings, and even the individuals with disabilities themselves. While there is much discussion in both the field and the disability community in regards to the topics of physician assisted suicide and euthanasia, there remains too little an interest in understanding the experiences and mindsets which are behind these cases that involve such hot-button issues. Either the doctors are unethical criminals hyper-focused on eugenics, or patients are diagnosed as clinically depressed and therefore incapable of making sound decisions about their care. While it is truly important to continue to discuss these issues, it is also just as important to look beyond the high profile cases to those which take place in America every day…often without notice.

Through years of searching I have found just one book to be of real help: Helping Children and Adolescents with Chronic and Serious Medical Conditions, edited by Nancy Boyd Webb. This book details the emotions and experiences that children and their families  commonly encounter throughout their lives in dealing with a multitude of conditions, and drives home for me the importance of acknowledging the disability status of dying and deceased patients. For those parents, families and/or caregivers who have spent years investing time, energy and emotion into physical therapy, surgeries, risky interventions, medications, specialized education efforts, doctor’s appointments, lengthy self-care routines, etc. the death of a special needs child is going to look and feel very different than the death of a child who was, in life, completely healthy. It is also going to look different from the death loss of an elderly individual who had been living with a physical impairment as a result of age, as opposed to a congenital or chronic condition present from early on.

In the years that have followed since my internship, convincing fellow professionals and students that this is a cohort whose needs are worth addressing has been an extremely challenging endeavor. Unfortunately, personal experiences are not an acceptable substitute for academic research and statistics.

Understandably so, but as a recent graduate I have not yet had the luxury of establishing myself with an organization or company who would be willing to invest the time, money and effort into conducting such research—so: I implore those of you who are working within the community to commit to understanding the complex role disability plays in loss and grief—not just in regards to children, but non-elderly adults with disabilities also. Thanks in no small part to spectacular advances in the field of medical, pharmacology, therapy, etc. we will all begin to see an influx of clients who have experienced some measure of disability either within their own lives, or in the life of someone they have loved. Having lived, and often mastered the art of living in the face of adversity and constant disenfranchisement, those who have been touched by disability have been trained to expect far too little. To hold back when they are asked to express themselves, and to consider their thoughts and feelings as less than. Please speak with the families and clients you work with about how disability has transformed and influenced their daily life—their hopes and dreams. If someone does not take the time to ask, it is likely that these unique grief responses will remain hidden from sight.

Drawing a connection between disability, dying, death and grief will do good to not only validate the struggles of millions of Americans, but undoubtedly enhance grief resources. Given that this field has grown leaps and bounds in my short lifetime, I am invigorated by the notion that I will see continued, vast growth and an expansion of ideas for years to come.

Realistically, I would hope to see grief groups, literature, collaborative efforts, research and training/coursework centered on the disability and death experience offered across the country. I intend to play my own role in seeing that these groups do not continue to go unnoticed in the future. Won’t you join me?

About the author: For more than a decade Sarah has been dedicated to advocating for those who have physical disabilities. Born with spina bifida myelomeningocele, the majority of her advocacy efforts have been within that community, with the primary goal of motivating others to live an ability-driven life. She strives to accomplish this through volunteering, mentoring, writing and public speaking events. In October 2013, Sarah earned a Master’s degree in Thanatology, and had her debut book Elf-Help Ability Therapy published through Abbey Press Publications. In her free time, she enjoys the arts, writing, traveling and dabbling in photography. Sarah is currently seeking employment in middle Tennessee.