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Post-Polio Health (ISSN 1066-5331)

Vol. 18, No. 1, Winter 2002

Conference on Rethinking Care

Joan L. Headley, MS, Executive Director, International Polio Network (now Post-Polio Health International)

In April 2001, I spent three days in Oslo, Norway, at a conference sponsored by the World Health Organization's Disability and Rehabilitation Team. The Norwegian Ministries of Health and Social Affairs, along with the Norwegian State Council on Disability, the Norwegian Association of the Disabled, and the Norwegian Federation of Disabled People, organized the event.

I struggled with how to report on the experience, and the job was not made easier when I recently received the final report (authored by Professor Colin Barnes, University of Leeds, United Kingdom) of 30 pages with six appendices. I decided to explain why we were there, to extract a few comments in an attempt to portray discussions, and to reflect.

Why were we there?

The conference – "Rethinking Care from the Perspective of Disabled People" – was convened in recognition of the fact "... that health and disability can no longer be understood in purely medical terms and that a more holistic approach is required." This universal challenge to orthodox thinking about medical, rehabilitative, and support services has its roots in the independent living and self-advocacy movements that emerged in the late 1960s. People with disabilities "... began to demand not only greater participation in the organization and running of disability services, but also to develop their own."

The challenge before the group of 100 from all over the world, both disabled and nondisabled, was to rethink how care for people with disabilities should be provided.

The background papers stated that the terminology of the conference would be of the social model of disability. In the model, impairment refers to an individual's biological condition. Disability denotes the collective economic, political, cultural, and social disadvantages encountered by people with impairments. In other words, going in we were dumping the "... unhelpful assumption that the only way to overcome the disadvantage of disabled people is to change the individual and not society."

Excerpts from individual presentations

"The concept of care is changing, from being a matter of charity to one of human rights and equal opportunities for all." –Guri Ingebrigtsen, Norwegian Minister of Social Affairs

"The magnitude of chronic conditions and injuries has increased in all regions of the world, but at the same time, the old problems of poverty, malnutrition and wars continue to be an important cause of morbidity and mortality." –Dr. Ala Alwan, Director, Management of Noncommunicable Diseases, WHO

"The beginning for every disabled person is very much the same. It starts with the emotional shock, together with news about 'the disability.' The way this new life starts will affect the future. The notice may be given by an insensitive professional who is discriminative or may be given by a professional with humanism, friendship, and knowledge about disability and about resources available within the community." –Dra Gabriella Garé Fabila de Zaldo, Mexico

"The healing for me started from my talks with the nurses who wanted to know me as a real person. However, the caring attitude was limited to pre-discharge. On the day of discharge, I was given a wheelchair, which I had never used before." –Marjorie January, South Africa

"Very often, women with learning disabilities are asked to undergo sterilization when they are young. The situation also applies to women with chronic illness, like me. After my first heart operation, my doctor told me that I should not have any children even if I was 'lucky enough' to get married." –Karen Ling, China

"For example, most parents will spend money on treatment but not for the education of the child or for an assistive device which would make the child able to participate in the community." –Anika Rahman Lipy, Bangladesh

"We can legislate the right to relief and support, the right to a home and daily activity, but we can never legislate the right to love. The challenge is to encourage society to welcome people with intellectual disabilities and to facilitate their opportunities for friendship. We must put persons with the most severe and profound disabilities on the agenda." –Elaine Johansson, Sweden

"Many times, and during social gatherings in particular, a disabled person is declared persona non grata because most people are of the opinion that impairment is a result of numerous sins against the supernatural. The result is loneliness. How long should or must society carry this misconception?" –Abdul Salim Usman, Ghana

"A society without care is unthinkable. We all need care. However, the care given does not often empower people. It may be the inverse – it may increase helplessness. The most serious threat against care and social development is implied in the frequent saying of today: 'I don't care.' ... We are indifferent – too many of us do not care! Indifference never leads to understanding. Lack of understanding creates lack of involvement. Human beings live in poverty, in desolation, without dignity and without self-respect owing to lack of involvement." –Lars Ødegård, Norway

"Care can be rethought. It can be re-oriented and approached from actual, and not perceived, needs. This requires the service provider to surrender control. It also means the user must take on more responsibility. I believe the current situation can be improved with increased dialogue. It is surprising how the 'monster-providers' are willing to listen and learn." –Alice B. Nganwa, Minister of Health, Uganda

"I hope we are able to discuss the kind of 'support services' that are appropriate for disabled people. I see such a service approach developing within what I will call, an 'aspirational culture,' i.e., services that are essentially concerned with supporting disabled people to realize their personal aspirations. This is a 'recipient requested service,' i.e., the service users request assistance to meet his or her own aspirations and goals. It contrasts with the 'care' services which are 'deliverer determined,' i.e., the service provider assesses the needs of the disabled person and then decides which services can be provided." –Vic Finkelstein, Centre for Disability Studies, University of Leeds, United Kingdom

"We have heard that there is too much emphasis placed on preventive health care at the expense of long-term care. I believe that the bulk of efforts in preventive health care have been targeted at non-disabled persons, and that persons with disabilities, as a whole, have not received the preventive health care they need. In the words of a disability researcher, 'to talk about wellness in the context of disability is to break the strangle-hold the medical model has had on disability interventions for far too long.' ... The education of health care providers will be key in addressing the problem. Education should include awareness-raising that challenges the assumptions and stereotypes about persons with disabilities. The curricula should be developed in partnership with persons with disabilities. Finally, persons with disabilities should be recruited into the ranks of nursing and other health care professionals." –Dena Hassouneh-Phillips, Oregon Health Sciences University, USA

"There are differences in how physiatrists and their interdisciplinary rehabilitation teams accept the active role of the 'patient.' The challenge for our organization is to contribute to making this concept an intrinsic part of rehabilitation medicine practice all over the world." –William J. Peek, International Society of Physical Medicine and Rehabilitation (ISPRM), Netherlands

"I would like to share the sense of discomfort that I feel at this conference where people from low-income and high-income countries share experiences and ideas. I suspect that historians of the future will say that the most terrible inequality in our current historical era was the enormous gap in wealth between low-income and high-income countries, though I fully acknowledge the terrible inequalities that occur within countries." –Mary O'Hagan, New Zealand

Reflections

I, too, was uncomfortable with the disparity of income of the attendees. There are numerous ways to frame it, but since we were talking about health care, I was struck by the fact that our organization pays a monthly fee for private health insurance for a three-person office that is almost four times the annual income of a person living in Bangladesh. It was appropriate that O'Hagan made the comment in the formal meeting, as several of us had discussed it privately. Since I was from the United States, I was in the minority and that was a learning experience for me.

I also was struck by the universality of the points made by the participants. At times, I felt as if I was back in Missouri at a Governor's Council on Disability meeting, in which a specific disability group would strongly advocate for their special problems, followed by pleas from several other disability-specific groups, followed by a plea from someone that we need to "all stick together." I absolutely concur with the final report and acknowledge our many areas of agreement.

But, the reality is that our solutions can be opposing. The individuals with a psychiatric disability want policies that do not require long hospitalization, particularly without their consent. Individuals with a new spinal cord injury, in many cases, are being sent home without appropriate rehabilitation and support services.

I met very talented people from all regions of the world. It was exciting to make those connections and discuss how we could work together. Since my return to Saint Louis, I have periodically communicated with several of the attendees, but, as so often happens, we become occupied with budgets, editing, speaking and email viruses – all of those major activities and minor irritations we face in advocating for people with disabilities.

I know there was and will continue to be positive consequences from the meeting, but I am most excited (and consoled) by the memory of these talented people, each doing tremendous work in their part of the world.

For a copy of the report, contact Eva Sandborg, Technical Officer, Disability and Rehabilitation Team, World Health Organization (+41 22 791 48 74 fax, sandborge@who.ch).