[Special Feature: Disability and Society] Normalization and Barrier-Free Hearts

2018/12/05

When people hear the phrase "mental barriers," many likely think of the "prejudice," "discrimination," and "misunderstandings" toward people with disabilities that exist within each of our individual "hearts." Some may also think that considering people with disabilities as "pitiful" and needing protection is a "mental barrier." Certainly, having discrimination or prejudice, feeling pity, or thinking of oneself as superior are types of "mental barriers." To eliminate these, it is important for each individual to correctly understand the difficulties faced by people with disabilities and to take action with a "kind heart." However, if we limit the concept of "mental barriers" to a lack of understanding or kindness within individual "hearts," we lose sight of the essence of the problem. The root of the problem—where people with disabilities are forced to encounter various barriers—is the "way society is structured," built without considering people with disabilities. Failing to recognize that people with disabilities are members of society, being unaware of them, or failing to take action even when aware, is the source of "mental barriers." These appear as various barriers throughout "society," not just within individual "hearts." Below, I will discuss how we need to perceive "barrier-free hearts" in relation to the philosophy of "normalization."

Normalization is a concept proposed by Niels Erik Bank-Mikkelsen, who promoted welfare administration for people with intellectual disabilities at the Danish Ministry of Social Affairs and is known as the "father of normalization."

In 1950, people with intellectual disabilities in Denmark were forced to live in closed facilities far from cities, living in groups in large rooms, with restrictions on their belongings and actions, and were subjected to eugenic surgeries. Bank-Mikkelsen was pained by this reality and, resonating with the activities of "parents' associations" for people with intellectual disabilities, worked hard to make their slogans national policy. This led to the birth of the first law in the world to use the word normalization (the 1959 Law).

Bank-Mikkelsen stated the principle of normalization as: "The goal is to make it possible for people with intellectual disabilities to live as normally as possible." Haruki Hanamura, who was a close friend of Bank-Mikkelsen, described the basis of his normalization philosophy as "calling for freedom, equality, fraternity, and solidarity among people," and introduced its purpose in "N.E. Bank-Mikkelsen, the 'Father of Normalization': His Life and Thought" as follows:

"To recognize the human rights of every person with a disability and, by changing the surrounding environmental conditions, to make their living situation as identical as possible to that of people without disabilities, thereby realizing a 'society where we live together.'"

The idea of positioning the challenges faced by people with disabilities as a matter of "human rights" and realizing an "inclusive society" where everyone can live "normally" regardless of the presence or severity of a disability by changing the "environment" became the foundation of modern welfare thought.

It was Bengt Nirje of Sweden, who wrote "The Normalization Principle" in 1969, who systematized and developed the principle of normalization proposed by Bank-Mikkelsen. Nirje explained the principle of normalization as follows:

"The normalization principle means making available to all people with intellectual and other disabilities patterns of life and conditions of everyday living which are as close as possible to or indeed the same as the regular circumstances and ways of life of their communities and culture."

The philosophy of normalization began to be used officially internationally in the 1971 "UN Declaration on the Rights of Mentally Retarded Persons," was also used in the 1975 "UN Declaration on the Rights of Disabled Persons," and spread throughout the world.

The philosophy of normalization started with the human rights issues of people with intellectual disabilities, but it came to be considered a basic philosophy of social welfare for all people with disabilities, including the elderly. It had a major impact on the progress of international human rights guarantees for people with disabilities after the 1981 International Year of Disabled Persons (theme: "Full Participation and Equality"). It is also said to have influenced the "Convention on the Rights of Persons with Disabilities (CRPD)," which was adopted by the UN General Assembly on December 13, 2006, and entered into force on May 3, 2008. Yuji Mori, Policy Committee Chair of the Japan Disability Forum (JDF), stated the role that the normalization philosophy played in the formulation of the CRPD in his keynote speech at the JDF National Forum "Ratification and Full Implementation of the CRPD: Challenges and Efforts in Domestic Legislation" (2013) as follows:

"During the International Year of Disabled Persons, the recognition that 'persons with disabilities are not objects of treatment or protection, but subjects of human rights who build their lives autonomously with dignity, and barriers preventing their equal participation in society should be removed' spread widely throughout the international community. In Japan as well, signs began to appear that the philosophy of 'normalization' was taking root in daily life in both name and reality, and its realization progressed. In this context, the disability movement became active as a rights movement. Especially since the 1990s, cooperation between disability organizations progressed rapidly, and people with disabilities themselves, through the activities of these organizations, showed international solidarity and gained even greater influence on the stage of international politics. The progress of the 'philosophy of disability-led initiatives' and the idea of 'normalization' that began with the International Year of Disabled Persons symbolized the arrival of a time when a global culmination was desired. It can be said that the momentum for the formulation of the 'Convention on the Rights of Persons with Disabilities' was born precisely out of the UN Decade of Disabled Persons."

As Mori points out, the philosophy of normalization can be said to have been an important ideology forming the core of the movement regarding the human rights of people with disabilities in recent years.

To enable people with disabilities to live normal lives, it is necessary to make it possible for them to live in ordinary houses in ordinary places, attend ordinary schools and workplaces, and participate in various leisure activities after study or work, just like people without disabilities. However, when people with disabilities try to live ordinary lives, they encounter various "barriers." For example, when a person in a wheelchair tries to use buildings or transportation, "physical barriers" such as stairs and steps block their path. When a person with a hearing impairment tries to enjoy leisure through theater or movies, they encounter "cultural and informational barriers" where subtitles or sign language interpretation are not provided. When a person with a visual impairment tries to take university entrance exams or qualification exams, "institutional barriers" stand in the way, such as being refused the right to take the exam. Furthermore, when many people with disabilities participate in society, they encounter "attitudinal barriers" in various situations, such as being avoided, discriminated against, faced with prejudice, pitied as "poor things," or looked down upon. To realize the philosophy of normalization, it is important to eliminate these "barriers"—in other words, to be "barrier-free."

Efforts regarding barrier-free design started with the barrier-free physical environment to allow people with disabilities to access buildings. The first law regarding barrier-free design is said to be the "Architectural Barriers Act" enacted in the United States in 1968, which was the first federal law to demand access to buildings. In 1972, the UN compiled a recommendation stating that "action is necessary to remove physical and social barriers that hinder the social participation of people with disabilities," and in 1974, the UN Expert Group Meeting on Barrier-Free Design compiled a report on architecturally barrier-free design.

Barrier-free is an effort to eliminate "barriers" for people with disabilities. However, from the perspective of the normalization philosophy, buildings and other structures should be designed from the beginning with the assumption that people with disabilities will also use them. The American architect Ronald Mace was the first to propose this way of thinking using the term "Universal Design (UD)." Yoshihiko Kawauchi, who was a close friend of Mace and received the Ron Mace 21st Century Design Award in 2000, introduces universal design as "the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design, regardless of their age or ability."

The phrase "barrier-free hearts" (kokoro no barrier-free) is a unique Japanese concept that came to be used in our country. While the definition and proposer are not clear, the seeds of the idea can be seen when the Ministry of Education, Culture, Sports, Science and Technology introduced "exchange education" with students with disabilities in the 1971 Academic Advisory Board guidelines, proposing that understanding of disabilities is important for promoting exchange. Additionally, the first to link the word barrier-free with "heart" (kokoro) is thought to be the "Act on Promotion of Construction of Specified Buildings for Smooth Use by Elderly and Physically Disabled Persons" (commonly known as the Heart Building Law) enacted by the Ministry of Land, Infrastructure, Transport and Tourism in 1994. This law described buildings that are easy for the elderly and physically disabled to use as "heartful buildings." The term "mental barrier" is thought to have derived from the "attitudinal barriers" introduced in the 1995 edition of the "White Paper on Persons with Disabilities" published by the Prime Minister's Office.

Because "barrier-free hearts" was a concept that began to be used without a clear definition, it subsequently came to be used for various reasons and in various contexts. For example, when social problems arose where people with disabilities could not use parking spaces or multi-functional toilets installed for them, improving the manners of people without disabilities came to be called "barrier-free hearts." Furthermore, in the "Act on Promotion of Smooth Transportation, etc. of Elderly Persons, Persons with Disabilities, etc. (commonly known as the New Barrier-Free Law)" enacted by the Ministry of Land, Infrastructure, Transport and Tourism in 2006, the importance of "barrier-free hearts" was pointed out alongside physical barrier-free measures, and hospitality and information accessibility also came to be included in the content of "barrier-free hearts."

While "barrier-free hearts" had been used in various contexts and meanings, a unified conceptual definition by the government was established in the "Universal Design (UD) 2020 Action Plan" (Universal Design 2020 Action Plan) announced by the Japanese government toward the Tokyo 2020 Olympic and Paralympic Games. The UD 2020 Action Plan defines the society we aim for as an "inclusive society where everyone—regardless of disability, whether female or male, elderly or young—values and supports each other's human rights and dignity, and where everyone can enjoy a vibrant life." It positions the promotion of "barrier-free hearts" as necessary to realize this inclusive society, listing the following three points as its content:

(1) Understanding the "social model of disability," which holds that it is society's responsibility to remove social barriers for people with disabilities.

(2) Ensuring that no discrimination (unfair discriminatory treatment and failure to provide reasonable accommodation) is practiced against people with disabilities (and their families).

(3) Developing the ability to communicate with diverse others who have different conditions from oneself, and cultivating the ability to imagine and empathize with the difficulties and pain faced by all people.

The most significant difference between the new concept of "barrier-free hearts" defined in the UD 2020 Action Plan and previous ones is the emphasis on understanding the "social model of disability." In the conventional way of thinking—the "individual (medical) model of disability"—the cause of disability is attributed to the low physical or mental functions of the individual. To reduce the disability, it is thought that the person must make efforts to increase what they can do through education or rehabilitation, and that companies and individuals need to support the person with a disability. Thinking about "barrier-free hearts" based on this "individual model of disability" requires understanding "pitiful" people with disabilities who must constantly strive, and asks people without disabilities and companies to treat them kindly or help them. On the other hand, the "social model of disability" attributes the cause of disability to the way society is constructed without considering that people with disabilities are members of society, and to the way society continues to exclude people with disabilities. To eliminate disabilities, it is thought that the way society exists must be changed. Thinking about "barrier-free hearts" based on the "social model of disability" requires noticing the way society has been constructed and exists to exclude people with disabilities, and taking concrete actions as a member of society to change that state.

For example, in "barrier-free hearts" based on the conventional individual model, importance is placed on kindly speaking to and helping a visually impaired person hesitating in front of a traffic light or a person in a wheelchair having trouble in front of a store. While "barrier-free hearts" based on the social model also considers such actions important, it emphasizes not ending the matter there, but noticing the various barriers in society that limit the activities or restrict the participation of people with disabilities, thinking about the causes and solutions, and taking concrete action. In other words, in "barrier-free hearts" based on the social model, it is important to become sensitive to "barriers" in various places and situations in society, question the way society has allowed those "barriers" to arise, and continue taking concrete actions until an inclusive society is built. Of course, the concrete actions to be taken will differ depending on one's position and role. For example, someone in a position involved in administration like Bank-Mikkelsen could work on legislation; a business owner could renovate or modify a store; and a teacher could promote and raise awareness of the philosophy. Even without a special position or role, it is possible to lobby the National Police Agency to install acoustic traffic signals, call on stores to install ramps, or share information via social media.

To realize the inclusive society that normalization aims for, members of society must share the philosophy of normalization and make constant efforts to transform the way society exists. "Barrier-free hearts" based on the social model of disability means understanding the ideology of normalization, noticing the problems in how current society is constructed and exists, and having everyone—regardless of the presence of a disability—cooperate and continue to take concrete actions to realize an inclusive society based on their respective positions and roles.

In 2018, Keio University established the "Office for Equity, Diversity, and Inclusion" as an organization to lead the formation of a symbiotic society in Japan through the promotion of projects related to work-life balance, barrier-free access, and diversity. I hope that this organization will play a role in leading normalization not only within Keio but in all universities and the world.