3.1. Awareness of the ICF
More than half of the representatives had limited awareness of the ICF and answered briefly. Some said they had never heard of the ICF, or they had not heard discussion about the ICF either nationally or internationally. One informant states “Rather unkown. And no one is working to get it known, is there?” Another informant tells: “I believe there are a few users/patients that are aware of the ICF, I believe the information about the ICF is inadequate”.
Some of the representatives that knew about the ICF indicated that they felt they knew less about the ICF in 2001 as compared to 2010. Some said that the intention of the ICF was to combine the medical and social aspects of disability, and one respondent remembered that there were discussions about whether the ICF had stronger medical implications than social. The respondent indicated that he/she was concerned that the social implications had received less attention than the medical implications. One representative indicated that even though they liked the ICF, they were aware that several organisations argued it was hard to understand and use. For several representatives, the ICF was deemed not worth talking or learning about and was considered a non-issue. One representative said that if the ICF is only used by a few people, then the benefit is questionable. Since most of the disability organisations had very little knowledge of the ICF, they had not been actively spreading information about the ICF.
3.2. Arguments For and Against
The core of the argument against the ICF consists of empowerment versus the fear of professional’s authority over the disabled individual.
The most explicit argument against the ICF was a criticism about classification and that there have never been arguments for this type of individual classification within disability organisations. There was concern that the ICF, categorizing people with disabilities, could be misused by medical and social professionals (e.g., medical doctors, occupational therapists, physical therapists and social workers), politicians, authorities and scientists. This misuse could lead to the marginalization of people with disabilities, and several representatives considered individual classifications to have no value.
In their answer, a participant explained their criticism of the ICF: “We (the organisation) were already sceptical of the ICF long before it was launched here in Sweden. We thought that the detailed code system objectified people in an unpleasant way and it feels foreign/strange from a Swedish perspective. We don’t, as many other countries do, systematically put people with disabilities into categories or grades—and we don’t want to see that happen either. Unfortunately it would seem that professionals have fallen in love with the ICF and we fear that its use will only increase”.
Some respondents indicated that the ICF concentrates on the individuals, thereby making people objects, and all the details that some authorities and health organisations investigate according to the ICF could be offensive to users.
A participant answered: “I consider that the ICF would become a classification system that objectifies people with disabilities. Also that the ICF in all its rich details was degrading/offensive”. Another participant in the study described the experience of being offended: “Many members who have been victims of assessment criteria have felt offended by the questions asked. Certain questions are irrelevant to the information that was sought. The interviewer “slavishly” followed the classification system and as a result asked all the questions that are contained within the ICF, disregarding the fact that not all of them are relevant. This was experienced as very offensive”.
The questions asked by professionals were sometimes not considered necessary or even relevant; the classification system has often been used as an instrument. However, one respondent considered the detailed individual classification that was criticized above, to be relevant.
Those who were more positive about the ICF found different elements that could be used to improve life conditions of people with a disability. One representative indicated that the knowledge could be used to reduce challenges and increase the quality of life for people with a disability. A participant explains: “personally I think that the ICF is an important tool for all categories of staff who work with people with different disabilities. It is available at a detailed level and can be translated into practical work to improve and enhance the quality of life for people with disabilities”.
Other representatives argued that with the ICF, factors about the surroundings emerged, often earlier forgotten and the ICF focused on what hindered and what alleviated life conditions. Some argued that the differences between impairment, disability, activity and participation were described thanks to ICF and a structure was created. One informant tells about the importance that ICF can be employed by all professionals in a team. The informant says: “the ICF model is good as a comparison tool but is rather difficult to learn how to apply in a multiprofessional team. Many different professional groups’ assessment ate intertwined”. Another informant described it as follows: “The discussion (regarding the ICF) focused on uniting the medical and the social aspect. Depending on which “camp” you came from, some were against the feeling that ICF had a strong medical emphasis and others argued still there was too little focus on social and environmental factors. In the beginning and still ongoing, there are discussions about where the boundary between activity and participation are”.
One responded that there also was a need for a development of the earlier International Classification of Impairments, Disabilities and Handicaps (ICIDH) system. In one organisation, they had no arguments against the ICF in 2001 and thought that comparing studies both nationally and internationally could be performed thanks to the aggregated results of the ICF.
One person expressed a positive view of the ICF in their answer: “I believe and hope that we can do comparison studies that can be used to develop healthcare in the future that benefit us all”. The same organisation indicated that even invisible individual conditions could become visible thanks to the ICF. One positive argument about the ICF was that the ICF does not focus on diagnoses.
3.3. Influence and the Future
Some representatives wrote there was an obvious lack of focus on social policy within the ICF and that was the most important issue for disability organisations. Therefore, the representatives thought there was no point learning more about the ICF. There was also a criticism that they experienced ICIDH and the ICF as emerging without opinions from disability organisations.
The criticism from several organisations in Sweden is about not having been involved in the process of introducing the ICF. According to the respondents, only researchers and the professionals use the ICF as a tool to identify needs for support. For disability organisations the ICF is of limited value. One respondent argued that disability organisations are struggling to survive; they have no resources to work with and spread information about the ICF. A minor disability organisation has no possibility to spread information about the ICF. Informants stated that without the knowledge of the ICF, its content and use, it would be difficult for the classification to survive.
Relevant knowledge has to be spread. People using the ICF and scientists must take responsibility to spread information about the ICF. Even in the future, some argued, professionals might be more interested in the ICF than disability organisations. One informant wrote that research based on the ICF could be relevant to the development of hospital care and municipal care. The informant says: “Hard to say, but I believe and hope that we can do comparative studies that may be of general benefit when developing health care and community care in the future”. Another person states that there are possibilities to spread the knowledge of ICF in society “The possibility it great, provided that the information is spread, gets disseminated to all interested groups”.
The world needs a common language; the ICF could be developed after being inspired by disability organisations. One thought that disability organisations should focus on the abilities of the ICF and not the difficulties. One respondent suggested that the concept of participation should be the base for evaluation.