Director of Rehabilitation Psychology,
Allied Services John Heinz Institute of Rehabilitation Medicine
Interviewer: Terri Rozaieski
Brief Vita: Albert D. Jumper, MA, Director of Rehabilitation Psychology at Allied Services John Heinz Institute of Rehabilitation Medicine in Wilkes-Barre, PA. Clinical and administrative director of a staff of six (6) rehabilitation psychologists who provide psychological services to patients recovering from various medical problems and disabilities such as CVA, amputation, neuromuscular disease, fractures, multiple trauma, etc. Twenty years of clinical experience in both clinical and rehabilitation psychology.
Q: What is the most difficult part about adjusting to life with a disability?
A: The answer to this question seems to vary greatly from patient to patient. Due to factors such as age, experience and personality, each individual tends to adjust in his or her own way. But, in general, there are frequently recurring themes. In my opinion, the most common issue is related to loss of independence or the ability for self-care. When simple things become difficult or even impossible, most individuals can become quite frustrated and depressed about the loss of independence and often deny the need for appropriate assistance from others or from technology based assistance. This is particularly common in the early stages of adjustment. Denial as a defense is a common human coping strategy and often complicates the process of adaptation and delays learning of compensatory strategies.
Q: In your experience, is living with a disability made easier or more difficult depending on whether the person was disabled from birth or an early age or if he or she acquired the disability later in life?
A: As with many questions regarding adjustment, there is also a great deal of individual difference in answer to this question. Let me say that, in general, there are different themes of adjustment more commonly faced when comparing a lifelong disability to an acquired one. For example, an individual with a life history of athleticism and a strong personal investment in physical abilities and prowess will likely experience a profound sense of loss following an abrupt disability such as an amputation or spinal cord injury. The dramatic change in both appearance and function may at first be overwhelming and almost impossible to accept. Yet, the characteristics of determination and intensity that may have been learned on the playing field in the pre-disability life of this individual may eventually be harnessed to improve recovery and develop fullest potential.
In the case of a lifelong disability, there may be a great deal of hurt and resentment in the heart and mind of the child who has had to spend years watching peers participate in activities he or she could only dream of. But, because of good compensatory education and training from an early age, this child may more easily incorporate his or her disability into a sense of self and be less resistive to adaptive strategies.
The bottom line is, disability of any kind or degree present us with adjustment difficulties. The ultimate task is the same, how to maximize abilities within the limits our bodies have placed upon us.
Q: Following abrupt onset of a disability, such as an accident or rapidly progressing illness, how long does the initial adjustment to the disability take? How long before a person feels comfortable in his or her skin again?
A: Again, this is probably the most individualized of all components of adjustment. When I am assessing whether or not a person is “stuck” in their process of adjusting, I tend to look more at the individual’s behavior and expectations rather than the specific length of time. Not that time is not an important factor, but how that time is spent is even more important from my perspective. For example, after someone has seen multiple physicians and undergone multiple tests and evaluations with identical or similar results, yet persists in seeking additional options, I start to address the issue of acceptance. It is a difficult task for anyone to find that middle ground between accepting the cards you are dealt and coping within the best of your ability, while not giving up hope for future medical or technological developments. Hope is essential, and acceptance does not mean giving up hope. In my opinion, acceptance is more akin to deciding to work with what you have until a better realistic alternative presents itself.
Q: When people talk about this adjustment period, what exactly does that mean? What is the range of emotions that a person can expect to feel following a disabling injury or illness?
A: Over the years, many authors have attempted to address the issue of stages of adjustment, grief, etc. I believe that these attempts have been quite useful in increasing understanding and stimulating debate, but, the staging concept has also created the mistaken idea that people adjust in predictable and consistent ways. The range of emotional response to disability is extremely broad from initial shock, denial, and disbelief through anger, rage, even violence and hopefully ending in some degree of acceptance.
I have seen many individuals reach a level of despair including serious contemplation of suicide and remain at this level for weeks or months, only to ultimately rediscover a life with new challenges and new reason to be alive. People cycle through the stages of adjustment as their bodies respond to therapy and treatment and as their personal lives change. All the usual adjustments of life such as age, employment, interpersonal and sexual issues which non-disabled individuals struggle with also exists for those who are mentally or physically challenged. So the process of adjustment is ongoing. What I look for in assessing a person’s progress in adjustment is for a decrease in frequency and intensity of negative emotion and crisis. Also, an increased sense of future and purpose often exemplified by planning of future activities and expectations.
Q: How can family members and friends be of help during this adjustment period?
A: Probably the best thing a loved one can do for a family member adjusting to a disability is to be a good listener. We all have a tendency to want to help our loved ones overcome adversity. Often times there is nothing concrete we can do to change circumstances and just listening can be of great importance at these times. Also, if loved ones realize and accept that the person adjusting to the disability will often go through a broad spectrum of emotions it may make it easier for them to deal with the emotional display and not interpret it as failure on their part to be an appropriate support. When one member of a family is disabled, it affects every other member in some way. Many psychologists and family therapists look at families from the perspective of the “family systems” approach. A basic tenant of this approach is that a family system is always affected by any change in an individual member of that system whether the change is a positive or negative one. For this reason, it is often helpful for family members to be involved in various areas of treatment ranging from educational programs, support groups, and, in some cases, formal family counseling.
Q: What roles do mobility equipment, performance features and aesthetics play in rebuilding the overall self-confidence of a person with a disability?
A: Adjusting to a disability is never an easy task. But today, more so than ever before, technological advances have provided rehabilitation professionals with invaluable tools to assist individuals in their adjustments. From simple ambulation devices such as canes and walkers, to more sophisticated instruments such as motorized wheelchairs and prosthetics, there has never been a time when disabled individuals have had more available options. There is nothing more effective emotionally and psychologically than a good dose of success and increased functional capacity to raise an individual’s spirits and confidence. Today’s technology is often the key factor in turning disabilities into possibilities.