3rd Quarterly, 2006 No.141
Obstacles to Social Participation for Persons with Disabilities
Toshihiro Higashi
Lawyer and Deputy Chairperson of the National Council of Independent Support Centers
Current International Situation
According to estimates in 2002, there are 6.55 million persons with disabilities in Japan. 3.51 million of these people have physical disabilities, 0.45 million have intellectual disabilities, and 2.58 million have mental disorders. People with disabilities account for about 5% of the total population of Japan. The preamble of the Americans with Disabilities Act, enacted in 1990, stated that there are 43 million persons with disabilities in the U.S. Considering that the total population of the U.S. is twice that of Japan, the proportion of persons with disabilities in the U.S. is comparatively greater than Japan. On the other hand, China is said to have approximately 50 million people with disabilities. This number accounts for less than 4% of the total population of China (1.3 billion). World estimates suggest that there are 65 million people with disabilities internationally, accounting for nearly 10% of the world’s population.
Why does this proportion differ from one country to another? One possible factor relates to the question of whether the number of people with disabilities declines in proportion with social progress. For example, labor and traffic accidents that result in impairments occur regardless of progress. Some of those who would have died in the past as a result of these accidents are now able to survive, though with some impairments, thanks to medical advancements. Also, with the decrease in the infant mortality rate, the number of children who survive with disabilities has increased. In other words, social progress does not contribute to a decrease in the number of persons with disabilities, but rather an increase.
However, if disabilities eventually become considered as simply part of an individual’s personal characteristics, people will not necessarily identify such people as being “disabled people”. Social progress could possibly contribute to both an increase and a decrease in the number of persons with disabilities.
Concept of Disabilities
The other main factor rests with the question, “Primarily, what are disabilities?” For example, to the question of, “why am I considered to be disabled?” many people may respond with answers such as, “Because you cannot walk,” or, “Because you cannot climb up stairways.” This is because they think, “that’s how people with disabilities look.” The definition of “disability” consists of two models: namely, the “medical model” meaning physical, intellectual or mental impairments, and the “social model” meaning social barriers or attitudes resulting from an individual’s failure to fulfill social requirements to have a certain level of ability and to fulfill certain functions. The two answers cited above are dominated by the idea of the medical model. Paraphrasing, they say, “You are a considered to be a disabled person because you have impairments.” But, does impairment alone define me as being disabled?
For example, I was able to reach this second floor conference room using the building’s elevator. If there were no elevator, it would not have been possible for me to come to talk to you today. Would my inability to walk have meant that it was my fault? Or, would the blame have been on the building due to its lack of an elevator? If this building were a skyscraper with 100 stories and the conference room had been located on the 100th floor, then none of you would have been able to reach this room unless the building had an elevator. In reality, all towers have an elevator to assist people in accessing the upper floors. Mainstream society always provides assistance to people for actions that may be very difficult to achieve under their basic capabilities. However, when it comes to people with disabilities, society does not provide us with any assistance, but only says, “You cannot do it because your legs do not function.” This shifts the question away from the point. Social disadvantages suffered by persons with disabilities are caused by society. This is how the social model perceives disabilities.
As mentioned above, the basic concept of disabilities consists of these two contradictory ideas; attitudes towards and treatment of persons with disabilities differ significantly depending upon which idea is prevalent. In the former concept, only those who have obvious impairments are considered to be persons with disabilities, whereas in the latter concept, even those who do not have impairments, but who have some distinguishable physical features such as unique facial features, are very likely to be considered as persons with disabilities and to be discriminated against as a result. For these reasons, it is fair to say that the types of people included in statistics for persons with disabilities are not universal because the concept of what constitutes disability differs from country to country.
At the international level, WHO has also advocated two models. One is the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) developed in 1980. According to the ICIDH definition, diseases cause impairments which then cause disabilities, such as being unable to run, and finally result in handicaps. Based on this, it has been recommended that such handicaps can be eliminated by restricting the development of impairments through training and education.
Another model entitled ICF (International Classification of Functioning, Disability and Health) was developed in 2001. This model views the cause and effect relationship structurally, stating that disabilities are attributable not only to personal factors, but also social and environmental ones.
Two other models based on these ideas have been advocated in the social services. One is based on a medical model called the Social Service Model, which contains the idea that the problem of disability rests with the individuals and persons who have disabilities, and that these people should be assisted by society within society’s ability to provide such assistance. The other is a Rights Guarantee Model, which is a social model containing the idea that the problem of disability is not personal problem, but a problem involving public and social attitudes. It aims to guarantee the rights of persons with disabilities and to prohibit discrimination.
The Convention on the Rights of Persons with Disabilities
Even Sweden, which has a comprehensive welfare system, has introduced a law prohibiting discrimination in the area of labor. This suggests that even if Japan improves its welfare services and programs for persons with disabilities, this will not result in the elimination of discrimination against them. The U.S., which normally approaches problems from a human rights perspective, is experiencing problems with insufficiency in the provision of welfare services. In short, quality of life for persons with disabilities largely depends on where they are born. However, this is only applicable for those who live in developed countries. Those born in developing countries have few options other than whether to live or die, and must accept an impoverished life when choosing to live. Under these circumstances, the Convention aims to universally guarantee minimal rights for all persons with disabilities. Naturally, the fulfillment of all aims prescribed in the Convention is not easy, but the goal is the establishment of minimal rights.
Conditions in Japan
Support for persons with disabilities in Japan is divided into two types: institutional support and home-based support. About 10%, or 660,000, of the total population of persons with disabilities in Japan live in institutions, and most of these people spend many years or their entire lives there. I stayed in a facility for a short period of time when I was a junior high school student. As my impairment was minor, I did not stay there long. Since that time, I have never again been institutionalized. I have had various experiences throughout my life, as others in my generation have. However, those with severe impairments have remained in institutions and have led uneventful lives according to schedules established by facility staff. Living in institutions, unless we are subject to abuse or ill-treatment, guarantees our safety, but most of you here will have been able to live your lives according to your own will. Meanwhile, there are about 660,000 people living in institutions without any options. They spend the first half of their lives at schools for handicapped children, and the last half in institutions. They are segregated from society. The Brown Decision in the U.S. determined it to be discriminatory to segregate African Americans from Europeans. The situation in Japan, in reality, should be considered as a form of institutionalized discrimination, even though institutionalization is not legally enforced.
On the other hand, the occupation rate among those who have disabilities and stay home is 12%, whereas that among those who are not disabled and stay home is 60%. This constitutes discrimination against persons with disabilities in work as they are excluded from social participation. Of course, work is not only a form of social participation, but the figure shows that there are many persons with disabilities who want to work but are not allowed to do so. This is because, in Japan, the system is discriminatory. Thus, in the private sphere, there must be much more discrimination practiced every day.
Much Wanted Convention
The Convention on the Rights of Persons with Disabilities is to be adopted by the UN General Assembly in December (editor’s note: the Convention was adopted on December 13, 2006). Persons with disabilities and related NGOs have been invited to submit their opinions for the drafting discussions. Some state delegations also included persons with disabilities. NGOs around the world campaigned, “Nothing about us without us.” It should be noted that the voices of persons with disabilities have been included in the Convention.
Why is a convention that specifically focuses on the rights of persons with disabilities necessary? It is because existing international human rights instruments are less effective at solving related problems. Existing instruments consider persons with disabilities as merely one of the groups of actors who are entitled to practice the prescribed rights. However, except for the Convention on the Rights of the Child, there is no convention that explicitly deals with discrimination based on disabilities. The same can be said of the Constitution of Japan. Some constitutional scholars argue that Article 14 can be applied to discrimination based on disabilities, but the article in question does not explicitly mention disabilities.
This was due to the fact that even the UN human rights system relied on the medical model when it dealt with matters concerning disabilities at the time those human rights conventions were adopted. It may have been of the opinion that persons with disabilities deserved special treatment and never considered this may constitute discrimination. In other words, it considered that persons with disabilities were to be only the subject of protection and not actors who deserved to enjoy rights to freedom. It should also be noted that the concept of discrimination was relatively narrow at that time. The basic concept of this Convention does not create new or special rights that differ to those persons with disabilities have had in the past. However, it creates a new idea that substantive achievement of equality requires reasonable accommodation.
Contents of the Convention
The definition of disability was the most controversial issue in developing the draft Convention. In the early stages, it was difficult to reach a compromise between the two models, even to the point that a decision was temporarily made not to develop any definition. However, in the end a definition was developed to be included in the preamble and Article 1. It states, “…disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.”
Article 2 prescribes the definition of discrimination, stating, “…any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field.” This is very significant to the Japanese context because it defines that differing treatment resulting from ignorance or bias also constitutes discrimination. Most discriminatory practices against those with disabilities in Japan arise from such ignorance or bias, rather than taking the form of overt actions or words.
It should also be noted that the denial of reasonable accommodation constitutes discrimination under the Convention. Reasonable accommodation here means “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.” The inclusion of this phrase drastically changes the idea of discrimination against those with disabilities. It is particularly significant in the areas of education and employment. In the future, reasonable accommodation will be necessary to provide a certain extent of support to persons with disabilities. It is expected that current practices of dismissal or segregated education due to impairment, for example, will have to change. Currently, many companies have work regulations that contain provisions stating, “When employees become unable to rise to job requirements, the company can discharge such employees.” Under the Convention, however, employers need to make necessary accommodation in order to secure the employment of persons with disabilities. It also prescribes the need to promote inclusive education. The Government of Japan initially opposed inclusive education, but changed its attitude halfway through. This attitude change, from separation to inclusion, is an epoch-making one. Also, under the Convention, sign language should be accepted as an official language, meaning that oral education for the deaf will eventually have to be replaced by sign language education.
While we can expect these kinds of changes in the future, we should be careful not to take an optimistic view. The future ratification of the Convention by the Government of Japan in particular should not end with the act of ratification, but should result in positive changes to domestic legislation. In this sense, we should make genuine efforts from this point onwards. Our major challenge is to ensure that the Convention will be reflected in domestic law.
(Speech from a lecture on October 24, 2006, organized by the Osaka Liaison Conference for the UDHR)