Rehabilitation and Recovery of Persons with Psychiatric Disabilities

A relative of mine called Sandy Ghaly, a psychology student, paid me a visit at home and we talked a lot about a variety of topics, the most dominant of which was people with psychiatric illnesses and how these illnesses might result in their disabilities. Her discussion was so focused on their recovery and rehabilitation that made me think about how such people are looked at, dealt with and treated in our oriental societies. Her discussion was based on a journal article entitled “Recovery: The lived Experience of Rehabilitation” written by Psychiatrist Patricia E. Deegan. Here is the summary of her discussion:

Dealing with people who have physical or psychiatric disabilities seems somewhat sensitive, confusing, embarrassing and in some cases disappointing to either persons with disabilities, people surrounding or close to them or even to the therapists. With the consideration that the aim of any study focusing on this issue is to turn these disabled persons from being heavy burdens on society into productive working forces that can participate in the progress and welfare of their communities and societies, there are conceptions and attitudes that, if put right, can help the recovery and rehabilitation of these people. In her article “Recovery: The lived Experience of Rehabilitation” Psychiatrist Patricia E. Deegan discusses ways of approaching and getting people with psychiatric or physical disabilities into normal social life like healthy members of the community or society in which they live in rehabilitating programs that aim at their recovery. Differentiating between recovery and rehabilitation, she gives clear definitions and hitting explanations for both issues and handles the factors that may hinder or accelerate both as some sort of ups and downs of the process of recovery and rehabilitation, consolidating her insight with applications and examples from real-life situation to end with excluding other confused terms of recovery to purify its definition and its relation to rehabilitation.

To understand the whole process of rehabilitation and recovery in cases of persons with physical or psychiatric disabilities, the writer discerns between the two terms because confusing them may lead to undesired consequences and hence despair. The discovery and application of rehabilitation approaches and technology as models have made psychiatrists reconsider their ways of dealing with persons with disabilities. As most people with disabilities, whatever type of disability may be, have basically “the same needs” which are “to meet the challenge of disability” and to achieve a novel and appreciated “sense of integrity”, and as they share the same aspirations which are “to live, to work, to love” and to meaningfully contribute to their societies, there is no need to separate groups according to the category of disability. Rehabilitating disabled individuals is not like turning up a car or repairing a TV set as these people are “not passive” but reactive and responding recipients. They feel they are redeeming and restoring “a new sense of self and of purpose within and beyond the limits” of their disabilities. Thus, rehabilitation means the available services and technologies that help the disabled to adapt to their world. In other words it is the “world pole”. On the other hand, recovery means real life situations behaviors, conducts and experiences practiced by the disabled as they willingly and satisfactorily accept and overcome the challenges of their disabilities. Thus recovery is considered the “self pole”.

However, rehabilitation, the “world pole” and recovery, the “self pole” are integrating as they are two faces of one coin or two aspects of the same phenomenon; in the sense that rehabilitation is founded and built up on recovery processes; the thing that can explain the cases where best rehabilitation services are offered but they fail to help the disabled. What is needed here is something beyond the good services. It is the independent initiatives, participations and practices of the disabled persons as being active and courageous participants; such as getting out of bed, shaking off the numbing-mind exhaustion of the neuroleptics, getting dressed, overcoming the fear of crowded and unfriendly bus to get to their rehabilitation programs, and/or facing the fear of failure in these programs.

Despite the importance and fundamentality of the recovery process on which rehabilitation is founded, very little has been written concerning it maybe because it is elusive and fundamental or/and it cannot be described in scientific, psychological or psychiatric terms. It is rather a personal experience gone through by real people. The writer presents two real life experiences of recovery and rehabilitation with their ups and downs and their final exalting success that crowned her and Brad. The writer who was diagnosed as being schizophrenic, Brad who broke his neck and was paralyzed both met at a conference on diverse disabilities and talked to each other about their experiences and shared together their recovery. Thus, at a young age, both the writer and Brad had experienced the collapses of their worlds, dreams and hopes. They were both athletes and dreamt of the upcoming achievements and breakthrough. They both recalled the bitter impact of those first days following the onset of their disabilities as they were told that they had incurable maladies and they would be sick or disabled for the rest of their lives; but they could “adjust” and “cope” from day to day if they continued with recommended treatment and therapies.

Their recovery went through different phases and stages which make different from other terms that are confused with recovery such as cure, ending pain or anguish. Thus, their first reactions towards their permanent malicious situations were adamant disbelief, denial and rage against the facts told to them by their doctors and social workers. Their denial was their first crucial access to their recovery and it was their own way of surviving their first horrifying months. Their denial was a mere uplifting stage in the process of recovery which was characterized by a lot of progress and relapse.

As hours, days and weeks passed them by without getting better; they began to get undermined and to lose confidence and hope. Comparing themselves with their peers who were advancing from success to success, they found themselves sinking down and down in dark seas. Brad lay horizontal and in traction gazing at soap operas watching others live their lives while Patricia stood drugged and stiff in the hallways of a mental hospital, then later sitting in a chair in her family’s sitting room, smoking cigarettes and waiting for her bedtime. She couldn’t even help knead some bread dough. Their denial turned into despair and anguish. And this is a stage of steepness and downfall in the process of recovery. “When one lives without hope; (when one has given up), the willingness to do is paralyzed as well.”

This experience of anguish and despair means living in darkness without hope, without past or future. It is self-pity, hatred of everything good and life-giving, and rage turned inward. Anguish signifies inertia that paralyzes the will to do and to accomplish because there is no hope. Here despair, not disease, accounts for disability. This part of recovery is the darkest night that for some can last for weeks; for others it lasts for months, years or even forever.

In the midst of this black night still there is even a weak and fragile flame of hope and courage. Neither Patricia nor Brad could recall a specific moment when this flame came to life and illuminated the darkness of their despair. It was those who loved them and who did not give up or abandon them that kept the flame burning. Even though those loving people could not change them or climb the mountain for them, they kept suffering with them. Their love was like a ceaseless invitation, calling for Patricia and Brad forth to be something more than all this self-pity and despair until the miracle took place when Patricia and Brad gradually began to hear and respond to their loving invitation.

Even though recovery is not a sudden conversion experience, hope is the turning point that must be quickly followed by the willingness to act. So Brad shaved, tried to read a book and he talked with a counselor; then he applied for benefits, got a van and learnt to drive; he also went to college so as to work professionally with other disabled people; while Patricia rode in a car, shopped on Wednesday, and talked with a friend for a few minutes; then she took responsibility for her medications, took a part time job and had her own money; she also went to school to be a psychologist so she could work with other people who had disabilities. Consequently both Patricia and Brad rebuilt their lives and their rehabilitations on the three cornerstones of recovery: hope, willingness and responsible action. Recovery does not mean an end product or result or cure, but it is an ever-deepening acceptance of the disability limitations which instead of being an occasion of lamentation and despair they turn into a soil and ground where unique possibilities sprout. “And this is the paradox of recovery” which means that “in accepting what we cannot be or do we begin to discover who we can be and what we can do.”

Recovery does not signify the absence of pain and struggle but it means the transition from anguish to suffering. Anguish refers to futile, nowhere-leading pain that endlessly and increasingly circulates itself in a vicious circle where spirit, soul, mind and body are slowly ground and eroded; briefly it means a permanent collapse and drop. However, hope turns and transforms anguish into true suffering which is characterized by inner peace, productivity and new future. Finally recovery denotes a continuous process, a peaceful way of and a positive attitude towards life. And if recovery cannot be forced to happen in rehabilitation program participants, its environment (rehabilitation services, aids, technologies ... etc.) can be created where recovery process can be nurtured

There are some principles for creating good environments in rehabilitation programs. First, as people with psychiatric disabilities must be willing to try, to fail and to try again. So, rehabilitation programs must not contain rigid guidelines for acceptance. Second, they should amend their linear designs in a way that allows people who have dropped off at certain point, to restart from this point not from the start point. Third, rehabilitation program should reconsider their absolute definition of failure; instead failure is relative and proportional, the thing that can provide opportunities for dropped participants to resume their participation at the point at which they have dropped instead of not accepting them or making them reapply anew. Fourth, fail-proof programs models must be created so that participants can always come back where they are always welcomed, valued and wanted even as recovering persons because they can make the most effective use of rehabilitation services. Fifth, rehabilitation environment should be conductive to the recovery process by taking in consideration that each participant is a unique case for what promotes their recovery. Finally, consumer-run self-help groups, self-help networks and advocacy/lobbyist groups can also be important sources for persons in recovery and should be available as options.

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