The Continuum:
From Immobility to Mobility to Empowerment
 


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Victim assistance goes far beyond the physical; there is also a need to rehabilitate victims psychologically and give them the confidence and support they need to re-enter society as productive members of the community. This is not an overnight process, and the author describes the series of events that need to take place in order to make this difficult transition.


by David Holdridge, Country Manager, Jo Nagels, Clinical Supervisor, Caitlin Wyndham, Consultant, Self Help and Rights for People with Disabilities, Vietnam Veterans of America Foundation

Introduction

For those who are mobility impaired, there is a natural tendency to retreat from the external world and turn inward. Better health for the mobility impaired most often involves a re-engagement with the world around them, transition from the pain to the sedentary to the “outward-going.” Assistive devices combined with a strong will to re-engage are essential to beginning that journey back. They give mobility-impaired persons with disabilities (PWDs) a fighting chance to re-engage.

But that is only the beginning. For successful re-engagement and better health, the mobility impaired must be allowed two other essentials. They must benefit from connection with others who are facing the same challenges. They must also have the right to re-engage in ways that allow their evident value to be to put to good use.

As regards connections, there is both power in numbers as PWDs confront societal constraints and comfort as PWDs begin to feel less lonely in their struggle. Herein lie the seeds of movement. Not personal this time, but rather the movement of an idea and a force that can’t be denied.

And as concerns “good use,” embodied here is the notion that men and women need to have a sense of self-worth not only from within but also as reflected by the appreciation of the community for the goods and services PWDs offer.

At the end of the day, rehabilitation and re-engagement is a process. It cannot be addressed successfully by a focus on only one part of that process. Vietnam Veterans of America Foundation (VVAF) activities in Vietnam, supported by the Leahy War Victims Fund of the U.S. Agency of International Development (USAID), subscribe to this philosophy. The mobility impaired need to move, but they need to move in union and then to move toward a productive life. After this, most importantly, they need to move toward creating a national and international movement that has as its heart and soul the belief that all residents of this earth need to live in mutual dependency and respect, not only as an ideal but also because we will perish without such an allegiance to justice.

From Immobility to Mobility

The Background in Vietnam
Vietnam, like any country emerging from the effects of war, has many disabled people, both adults and children. Their disabilities can be directly related to the war (e.g., amputation from unexploded ordnance or trauma), or indirectly (e.g., polio as a result of a lack of vaccination programs). Vietnam also seems to have a high proportion of children with cerebral palsy. In Vietnam, there is also the question of dioxins and the effects they may have on children of those who served directly in the military or those simply living in the worst affected areas. In many of these cases, ongoing orthotic care and rehabilitation is needed.

(Above and Below) Before and after: bracing a boy with an orthosis in Cuong-Vinh Phuc province.

Changes in lifestyles, including an increased use of motor vehicles, tobacco, alcohol and illicit drugs, lead to new health problems and a need for more orthopedic devices. The case load currently seen within the VVAF facilities in Bach Mai and the National Institute for Pediatrics (NIP) indicates a broad range of diseases and impairments that can be related to both the populations of “developing” and “developed” countries. The adult population of patients at Bach Mai suffers from many of the degenerative diseases of aging, e.g., osteoporosis. There is also a large number of people suffering from lifestyle diseases, e.g., stroke and diabetes. Recent newspaper articles indicate the prevalence of diabetes is rising. The pediatric population of patients at NIP indicates a decrease in polio, but an increase in cerebral palsy.

As Vietnam emerges and develops as a country, the population will also change; however, this is likely only to increase the needs for rehabilitation and orthotic/prosthetic services.

Inherent Challenge to Treating Immobility in Vietnam
If you don’t have confidence in the diagnosis, you won’t have confidence in the prescription. An effective professional seeks to understand the needs, concerns and situation of the physically challenged person. The amateur will sell the product; the professional will suggest solutions to the needs and the problems. It’s a totally different approach, the integrity in delivering a skilled service.

Rehabilitation should not be focused exclusively on bracing for selective vocational retraining but should be directed toward enhancing adequate functions in all areas of life. Nor is it limited to restoration after accidental injury, emotional breakdown or acute disease, but it includes developing the capacities of individuals affected by congenital defect, a process that some call habilitation rather than rehabilitation.

Capable services also include using appropriate technology to benefit the person. Appropriate technology is a system providing proper fit and alignment based on sound biomechanical principles that suits the needs of the individual but which can be sustained by the country at the most economical and affordable price.

Polypropylene as “Appropriate”
There are some innovative new prostheses for amputees and orthotic devices and technologies being adapted to meet the need for prosthetic care in deprived countries. High-tech devices turn out to be inappropriate in the light of local repair, resistance to harsh circumstances, durability and expense. What is appropriate?

In 1995, the International Society of Prosthetics and Orthotics, with USAID funding, held a conference in Phnom Penh to look closely at the vexing question of appropriate prosthetic technology for the developing world. This discussion had raged for several years, with various agencies adopting wildly differing views on just how we could deal with the huge numbers of limbless people in the world.

Although nowadays most care servers are committed to rather nice, locally designed and manufactured modular prosthetic systems and custom orthotic designs and fittings, Vietnam still struggles with the acceptance of the use of polypropylene in most of their workshops. The system works well in many countries and is relatively easy to use. It was designed and built by a team of prosthetists and engineers working together. Polypropylene materials display properties that are unique when compared to other materials and have contributed greatly to the quality of our everyday service. Polypropylene, properly applied, will perform functions at a cost that other materials cannot match.

VVAF’s rehabilitation programs in Vietnam are supported by the Leahy War Victims Fund and implemented in partnership with the rehabilitation departments of two of the leading hospitals in the country under the wings of the Ministry of Health: the NIP and Bach Mai University Hospital, both located in Hanoi. Since 1994, VVAF’s NIP has produced and distributed more than 6,000 quality thermoplastic braces, helping 4,000 kids to achieve a better future and quality of life. Today, the Institute also provides much-needed medical and rehabilitative services to children suffering from cerebral palsy, clubfoot, and other ailments requiring braces and physical therapy.

Institution Building
In both Bach Mai and the NIP, VVAF focuses on training existing staff to improve the quality of service at each hospital. A key goal has been to provide educational opportunities for mid-level program staff. VVAF sponsored several in-house workshops and enrolled several senior technicians in the International Society of Prosthetics & Orthotics (ISPO)-recognized Vietcot School. At the conclusion of both courses, trained staff will be proficient in the fabrication and correct biomechanical manufacturing of polypropylene orthotic and prosthetic devices. VVAF’s rehabilitation program at Bach Mai is growing and has been strengthened with the inclusion of four ISPO CAT II recognized graduates from the Vietcot School. To meet the needs of a burgeoning disabled population that cannot make its way to the NIP or Bach Mai, VVAF’s Mobile Outreach Program has continued to bring basic rehabilitation services directly to the countryside to assist physically challenged children.

Recognizing the critical importance of post-category II training, VVAF programs will enhance education and training to promote the institutional will and capacity of the NIP and Bach Mai to achieve excellence in physical rehabilitation and extend these services to five selected provinces. This instruction program will not only cover the clinicians but allied health staff as well. The training will cover all essential technical components as well as provide key doctors and technicians with English skills and a “train-the-trainer” program. This aims to ensure the sustainability of training and professional development at the two key hospital workshops and in provincial facilities. When the expatriates depart, these local Ministry of Health staff can continue the training effort.

Stepping Out Into the World
During the past two decades, there has been an increasing recognition that the disabling effects of disease, accidental injury and congenital defect constitute one of the greatest responsibilities not only of medicine but also of society itself. Rehabilitation workshops should provide the best service possible to anyone requiring assistance.

But how should one deal with the loss of self-worth in an individual who has lost not only his earning power but his ability to take care of himself? How can one value the burden of frustration, anxiety, dependency and physical distress that is the daily lot of so many disabled persons? How can one fully appreciate the effect of the social rejection and job discrimination that are still so prevalent? The fact that many are able to bear these burdens with dignity does not alleviate the problem of disability. That can be done only through an enlightened social policy, a wide-scale research effort and an ever-expanding rehabilitation program.

VVAF believes the answer to that lies with the disabled people themselves. VVAF believes that after generations of being spoken to, spoken for and spoken about by the able-bodied, people with disabilities can speak for themselves. The creation and acceptance of self-help groups in any society is a must and is an important tool in ongoing rehabilitation.

From Mobility to Empowerment

User Groups
In many so-called “developing countries,” the transfer of the technology needed to benefit the mobility impaired has preceded the transfer of skills needed to create a context whereby the PWDs can maximize the benefits of assistive devices and whereby the benefits of the technology transfer extend beyond the departure of the expatriate expertise.

As described above, the diagnosis, manufacture and application of devices is a highly complex endeavor requiring great coordination among a variety of experts including surgeons, prosthetic and orthotic technologists, and physiotherapists. This combination of expertise is mostly “done” to the patient. The time soon arrives when the PWD makes the long walk back to his/her home and community. In perhaps the majority of cases in the developing world, there is no return visit to those who have helped the person gain mobility. Now they often find themselves in that trough where their accommodation with the new device often produces more discomfort in the immediate than the PWD experienced before. At this juncture, the support and encouragement of the family are critical.

Unfortunately, despite an evident love and concern of the family, in most cases they do not know how to help. Nor are they immune to prevailing stereotypes about PWDs. Families in this situation tend to protect rather than push. The result is that often at this critical stage where the PWD is tempted to return to his/her “used-to-be” condition, the family is abetting this tendency. Other forces need to be applied to help the recently mobility-enabled person to make what is often a Herculean effort to re-engage the world and to make the assistive device part of him/her.

This is where the significance of user groups is paramount. Broadly defined, this is a peer group of persons with similar challenges. Most experts would agree that these groups are both essential for a continuation of the rehabilitation process as well as providing support and encouragement for the PWD to become the best he or she can. As concerns the “continuation,” very few people in developing countries who have benefited from assistive devices ever get the opportunity for a re-assessment of the fit and of the overall benefit of the device, nor for a period of physiotherapy during the transition. If modifications could have made the device more useful and attractive to the PWD, it will not be discovered. With time, the device will be discarded. The hopes and dreams of the PWD will be dashed in such a way that the re-application of a device will be difficult to attempt. The PWD will relapse into the previous condition. Just in practical terms, the large cost (especially in developing countries) of providing assistive devices is too often wasted.

Conversely, the costs associated with organizing user groups (especially in populated areas) is minimal. It involves modest subsidies for travel costs and perhaps a rental location where the user groups can assemble perhaps twice a month and be examined by qualified prosthetic orthotic technologist experts as well as by physiotherapists. Adjustment to devices can be made, carry-home physio courses can be applied, and encouragement can be given.

Equally important, the “users” of assistive devices can gather with their peers, trade stories and share information about opportunities. At a recent meeting of a new self-help group consisting of patients of Bach Mai University hospital in Hanoi, a woman was examined by a the expatriate clinical supervisor. “When was your prosthetic device fitted?” he asked. “In 1984,” she replied. Which explained why it was such a bad fit and why she required crutches to walk even when wearing the device. “Why have you not returned for a new one?” “Nobody ever told me I could!” This woman had spent several years at home with little social interaction, simply because getting out of the house was so difficult. She recently thanked VVAF for supporting the establishment of a self-help group as it has made her life worth living again. She says she looks forward to the bi-weekly meetings and has regained some joy in living.

From User Groups to Self-Help Groups
This is the beginning of a potentially wonderful transformation. This is where a group that was begun for rehabilitation and its attendant benefits is now transformed into a group for empowerment. With little facilitation, leaders emerge from within the group. They are authentic because they are also PWDs. They speak from the same place. Attendance and participation are encouraged through peer pressure and perceived value, rather than on the basis of obligation to authority. Again, with only modest facilitation from outside, the group naturally evolves from rehabilitation to mutual support to discussions on empowerment and “good use.” Talks become increasingly centered on how to use their mobility toward becoming productive and self-reliant citizens. The group gains access to employment, access to public buildings (schools, hospitals, trains, buses, etc.), access to higher education and then, finally, access to the public policy debate.

At this point, a core of enthusiastic PWDs has moved from rehabilitation to advocacy about “rights,” the precursor to the promotion and promulgation of the basic tenets of Vietnamese socialism.

From Self Help to Empowerment
Parallel to these developments at the community level, there should be a commensurate national and international linking. Support, encouragement and empowerment of PWDs should not be limited to borders. Again, for modest investments, the PWD user/self-help groups should now be linked both physically and electronically with other existing and emerging groups throughout Vietnam. In the beginning, like most movement, this will indeed be driven by educated PWDs, mostly those from urban areas who have been fortunate enough to benefit from a university education. They are the ones who will take leadership positions with communities and then become part of national coalitions of such emerging leaders nationwide. The low costs and increasing ease of access to electronic communications will keep this “sharing” constant and productive. Best practices and lessons learned can be communicated quickly and effectively across PWD groups throughout the country. In Vietnam, this has started through the Disability Forum of the Vietnam Union of Friendship Organizations’ non-governmental organization (NGO) Resource Centre. Organizations of people with disabilities have made this Forum their own and communicate regularly through the website and an electronic newsletter (see http://forum.wso.net/). 

Just one step removed, but based on the same principles, both community and national groups can, at low cost, now communicate with their peers all over the world. They can connect, with only small subsidies, to the international PWD movement for support, encouragement and empowerment. The new technologies can do wonders for breaking down the isolation many PWDs feel. Being comfortable with these new technologies also represents part of the skills acquisition process that will heighten employment opportunities in countries such as Vietnam.

As one distinguished PWD said recently, “the day when PWDs can take their rightful place in society and make a contribution to society can not arrive until the PWDs themselves are at the heart of the process.”

In sum, the sought-after destiny for PWDs is a process. As concerns the mobility impaired, it is a process that begins with the transition from pain to withdrawal to re-engagement, at first through the expert help of doctors, orthotists, prosthetists and physical therapists, and then from the light touch of outside “organization” facilitators, and then finally “of and by” themselves. The lessons learned here are clear. The physical treatment of the mobility impaired cannot be done out of the context of another low-cost process whereby the benefits of mobility are married to re-integration and rights. To provide the wherewithal for mobility without addressing the other needs of the PWD is wasteful.

At the end of the day, the PWD movement is no more or less than a justice issue, justice defined as “right relations.” A world where all persons are mutually dependent and respectful. To be part of the PWD movement in Vietnam is to participate in moving the world closer to justice.

*All photos courtesy of VVAF.

Contact Information

Vietnam Veterans of America Foundation
15 Dang Dung St
Ba Dinh District, Hanoi
Vietnam
Tel: 84 4 733 9444
Fax: 84 4 733 9445
E-mail: holdridge@fpt.vn
Website: http://www.vvaf.org

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