[Interview Series] “Mental Health Policy in the Eyes of Those It Affects” Interview #5: Professor Natsuko Hagiwara “Enact citizen-driven policies so people with disabilities are supported by society as a whole”
date : 2/15/2021
Tags: Mental Health
Professor Natsuko Hagiwara (Chairperson, Japan NPO Center (JNPOC); Professor, Graduate School of Social Design Studies, Rikkyo University; Member, Advisory Board, HGPI Mental Health Policy Project)
“Enact citizen-driven policies so people with disabilities are supported by society as a whole”
- Self-introduction and current activities
Professor Hagiwara’s starting point was the “Citizen’s Research Contest”
One of the stated goals of Health and Global Policy Institute (HGPI) is to achieve “citizen-driven healthcare policy.” I served as program officer for a program that ran from 1989 to 1997 called “Let’s Take a Close Look at the Environment Around Us” and was part of the Toyota Foundation’s Citizens’ Research Competition (which was held from 1979 to 1997; hereafter the “Competition”). This was probably the first program in Japan that provided citizens with grants to conduct research on their surrounding environments.
But why did they place their focus on citizens? Mr. Yoshinori Yamaoka, who was serving as a program officer at the Toyota Foundation and is currently an advisor at the Japan NPO Center (JNPOC), was the one who devised and implemented the concept of “Citizens walking around and seeing with their own eyes, conducting surveys and research, and making policy proposals to solve community issues based on evidence.” It is no exaggeration to say this was a groundbreaking initiative for the period, because the research was conducted by citizens who had been living in the targeted regions and were therefore experts on local issues. Researchers may have the tendency to pursue research for the sake of accumulating achievements for themselves, but citizens feel responsible towards their communities. When research is conducted by local residents or people closely involved in a community, it is conducted with a strong sense of ownership. Citizens cannot conduct such research in an irresponsible manner. To share an example of research conducted in an irresponsible manner, we can look to the interviews conducted after the Great Hanshin-Awaji Earthquake. Researchers, experts, and journalists who came from outside the stricken area and interviewed locals in a mechanical manner, which ended up hurting the feelings of the disaster victims. I call such researchers, “Passer-by researchers.” I remember that based on lessons learned then, a notice was issued after the Great East Japan Earthquake reminding people not to engage in such behavior. (Note from HGPI: For more information on this issue, please see the March 28, 2013 proposal “Current Issues and the Future of Academic Investigation on the Great East Japan Earthquake” presented by the Science Council of Japan.) I learned through the Toyota Program that it is meaningless to distinguish between “experts” and “amateurs” when it comes to discovering and solving local issues.
I learned another important lesson during my activities for the Competition. When I spoke with a person with a severe disability who serves as the representative of a certain organization, they said, “Thinking of people with strollers and wheelchairs might give the impression that we should make the whole city barrier-free, but that’s not true. For the visually impaired, there is nothing scarier than a completely even street.” That made me realize something. What they were emphasizing was that it is no good for people with disabilities to only think of themselves, even if it is for others with the same disabilities.
As such, only those most affected know how many centimeters high a step should be or what kind of tactile paving is necessary. This is why it is important to continuously involve various people affected by disabilities in projects and discussions. I think the same could be said for policy proposals. It is important to have a process design that considers how to involve members of the public and those most affected.
So, I must conclude that my starting point was the Competition. I think it was there that I learned universal process design methods for allowing the various citizen stakeholders, who make up local communities, to interact and connect through surveys and research and to solve problems.
Professor Hagiwara utilizes her experience in Government as chair of the Toshima F1 Conference
I then became a university professor, and about six years later, I was invited by then Governor Shiro Asano of Miyagi Prefecture to serve as Deputy Director of the Miyagi Prefecture Environment & Living Department. I was only appointed for a two-year term, but I gained much from my experience in local government. For example, citizen-driven policy proposals are often made at the wrong timing because people do not understand how the government works. Consider the Toshima F1 Conference (hereinafter, the “F1 Conference”), which was launched to revitalize Toshima City, a city that was at risk of disappearing because of a decreasing population. One of the reasons the F1 Conference successfully raised approximately 880 billion yen was because it managed to submit its budget by autumn and made it to the Diet in time for February.
It is important that the policymaking process is accessible to a wide range of people. People with mental disabilities have their own unique perspectives, so I think the key issue is finding how to best gather the voices of many people. Someone must create a mechanism or system to make the current situation visible. After that is done, it will be important to determine when, how, and in what form to generate citizen involvement. Once members of the public have participated in an initiative, the next step is to get them to join in the planning process. This expands the project from one point to a line, and to then spread it out over an area. It is not only important to lend an ear to the voices of citizens, but to gradually make citizens’ opinions take form.
The F1 Conference uses the World Café method* to gather many opinions. Those opinions are then summarized and discussed together with representatives from the Government, at which point they are ordered by priority and synthesized into proposals. This method is now known as the “Toshima Style” and is being used to formulate policy. Toshima City has transformed into a city that is easy to live in for everyone.
*World Café method: A method in which a relaxing atmosphere, unlike a normal conference, is created to hold discussions focusing on a specific theme. Rather than disagreeing with each other’s opinions, participants strive to respect the opinions shared by others with the goal of making new discoveries. Continuous discussions are held with small groups of four to five people with members rotated in and out periodically.
Professor Hagiwara became aware of herself as a party affected by healthcare policy when her grandchild developed maple syrup urine disease
In June 2013, my grandchild was born with a congenital metabolic disorder called maple syrup urine disease, an intractable disease that affects just one in 640,000 people in Japan. Because their body is unable to break down essential amino acids, they are unable to consume proteins, including those from breast milk. Whey they were born, however, maple syrup urine disease had yet to be designated as an intractable disease. A signature campaign from a patient group and other efforts led to a law revision that designated maple syrup urine disease as an intractable disease in July 2015. (Information on maple syrup urine disease can be found in Japanese at MSUD-JAPAN.)
My daughter said that attending a patient meeting and seeing other people with maple syrup urine disease doing well gave her hope. This made me realize it is very important to see people engaging in mutual cooperation in everyday life.
Accepting the disease was tough, but we were open about it and actively sought advice from people like specialists we knew. I think it was wonderful to receive positive encouragement from the people around us.
It is important to accept the situation as it is while connecting with others
HGPI: Regardless of the disease, when someone is diagnosed with something, they worry and suffer. If they close their mind and avoid establishing relationships with the outside world, they will not be able to receive help from people around them. By overcoming this and opening up, you were able to connect with various people and gained their cooperation.
Hagiwara: If you view the disease as an obstacle, it becomes something you have to overcome. I think it is a question of if you can accept yourself just as you are. I think it is likely that education from an early age is also important. It is said that to connect with people, we must feel things like, “They are trying to understand me” and “They accept what I am telling them.” So, we must build relationships that make us feel this way. NPOs might be able to serve as mediators in that process.
- Professor Hagiwara’s opinions on Mental Health 2020
Continuously build connections with a bright outlook
Because my grandchild’s disease is called maple syrup urine disease, my daughter has been reaching out to companies and organizations that deal in maple syrup to ask for their cooperation. It went almost perfectly. We still keep in touch with the president of an import company who wrote us back because he received our letter. This experience provides an example of the way I would like to see mental health initiatives promoted – as cheerfully as possible. If they are too serious, it will be hard on the people involved.
The capacity to seek support and the ability to accept it
In Japan, people are taught from a young age not to be a bother to anyone, and we end up lacking the capacity to seek support. In other words, we do not have the ability to say, “Help me,” or ask for help. Rather than just saying, “I don’t need help, I’m okay,” it is important to be able to communicate to others about your problems and what you want them to do for you. It is also important to have the ability to accept support. In the field of disaster prevention, attention is growing on the importance of the ability to accept support among both communities and individuals who are the target of various support efforts. And to communicate with others, it is important to learn the art of communication. JNPOC and Dentsu, Inc. have been collaborating to host seminars for a program called “The Art of Communication.” This program aims to help NPOs improve their communication skills to expand their activities. We have been running it for about 16 years and we would love for it to serve as a good point of reference. (For more information, please see “The Art of Communication” at the JNPOC website here.)
- Ensuring people with mental disorders are prepared for disasters is another important perspective for the future
Support for caregivers
The Great East Japan Earthquake highlighted the problem of “hidden people with disabilities.” Some people had been hiding the existence of family members with disabilities. This meant that some people could not go to evacuation centers or that voluntary disaster prevention organizations could not confirm their status. I have also heard that few municipalities classify people with intractable diseases among those who require support.
When disaster strikes, people with mental disorders come to face even more difficult situations. Just as their conditions are worsening, it is likely that local NPOs and other organizations that had been providing them support are also suffering from lower capacity due to the disaster. This means we must consider forms of support that include both people with disabilities and their caregivers, including their families. In addition to support for people with mental disorders, I think we must make policy proposals for continuous support for caregivers during normal times.
Building environments in which people with disabilities are visible
Unlike many cases involving people with physical disabilities, unless the affected party speaks up or someone representing them speaks up for them, understanding when someone is affected by mental, internal, or developmental disabilities (which have been growing more common in recent years) can be difficult.
In particular, there are complex issues that come with developmental disabilities that cannot be taken together under the same umbrella, so I think people affected by them or other concerned parties must speak up. For example, a survey conducted by Rikkyo University, where I work, found that although online classes have become common at universities due to COVID-19, certain developmental disabilities like Autism Spectrum Disorder (ASD) and Attention-Deficit Hyperactivity Disorder (ADHD) have characteristics that make online classes unsuitable for people affected by those disorders.
Students attending my seminar course conducted a survey on employment support for students with developmental disabilities at universities as part of their master’s theses. They found that such students need more detailed, closer support that fits the characteristics of their disability. Unrelated to disabilities, values concerning work and work styles have been undergoing a dramatic shift in recent years. For example, in Japan, there has been a shift from “membership-type employment,” in which people seek to belong to an organization rather than to perform certain tasks, to “job-based employment,” in which employers rely on the expertise and characteristics of each member of the organization. These changes might, in a sense, lead to expanded employment opportunities for people with disabilities. Therefore, I think the practice of providing support for “job-based employment” will be expanded so people with disabilities can find jobs that make use of their individual characteristics and specialties.
Those most affected understand the importance of “strategic meddling”
To create an environment in which people with disabilities are visible, we need opportunities, frameworks, and mechanisms that allow people to recognize and accept each other and to have roles to play. As society grows more diverse, the need for such systems will continue to grow. To build a society of mutual support, I think some “meddling” is necessary. But because intervening too much can cause problems, I think it is also important to aim for a moderate degree of intervention and to engage in “strategic meddling.” It is difficult to know how much to intervene, but through my grandchild’s illness, I am in the process of acquiring that knowledge firsthand from the perspective of one of the parties most affected.
It is also important for people to manage risk with an awareness that they might find themselves in the same position at any time. As Ulrich Beck said, “individualization” is transforming companies and families and is forcing individuals to take on all sorts of risks. We have fallen into a situation where we cannot say, “Help me.” Therefore, it is important we create loose connections that allow us to call for help or provide help during emergencies. One example of how to create loose connections is Neighbors’ Day, which is said to have originated in an apartment in Paris. While Neighbors’ Day is a very simple celebration in which people bring their own food and drinks to gather and chat, it serves as a system for creating regular opportunities for residents to easily meet, interact, and connect with their neighbors to ultimately form a community safety net.
Supporting those our systems do not reach
When a system is created, there are always people who end up marginalized. Therefore, whenever we create a system, we must keep in mind that some will end up outside of its scope. This is why we must make systems better than the ones we have now. For example, some diseases are designated as intractable diseases while others are not. We need to think about how to provide support to those whose diseases are not designated intractable diseases.
For their entire lives, people with maple syrup urine disease must drink a special type of milk that does not contain essential amino acids. However, due to the small number of patients and the high cost of production, each can of the milk costs tens of thousands of yen, and the company that produces the milk does so as a form of contributing to society. Maple syrup urine disease is a specified chronic pediatric disease, so financial assistance was already available for children under age 18. Now that it has been designated as an intractable disease, financial assistance has finally become available for people after they turn 18. I think an issue we must address in the future is determining how to provide support to people with rare diseases that are not designated as intractable diseases.
The importance of enacting laws
The Equal Employment Opportunity Act took more than ten years to be enacted. I am a member of the generation that had to seek employment as a new graduate before it was enacted. Back then, women who were about to graduate from four-year universities were barely given opportunities to sit employment examinations, so I was happy when the law was created. While it is true that it is full of loopholes (called a “colander law” in Japanese) because it does not set any penalties, if we do not enact laws when we have the opportunity to do so, we will not make any progress. Once a law is in place, however, it can be amended to fit the situation. That is why it is important to make policy recommendations. We can gradually revise laws to make them a better fit for actual situations, and it is for that reason I believe enacting laws is highly significant.
(Interview held on December 4, 2020 at Professor Hagiwara’s office)
“Mental Health Policy in the Eyes of Those It Affects” Interview Series
Since its establishment in 2004, Health and Global Policy Institute (HGPI) has worked as a non-partisan think tank under the guiding principle of helping citizens shape health policies by generating policy options. Through conversations with multi-stakeholders including members of the public and parties most affected in Japan and abroad, HGPI amplifies the voices of citizens in proposals and statements in a global context to contribute to the realization of evidence-based health policies.
The knowledge provided to HGPI from people affected by mental disorders throughout our ongoing efforts for mental health in a project that began in 2019 led to the presentation of “Mental Health 2020 – Proposal for Tomorrow: Five Perspectives on Mental Health Policy” in July 2020. Moving forward, we will help empower people affected by mental disorders to independently engage in forming mental health policy and have their voices be heard by providing access to knowledge from organizations representing those most affected in other disease fields in Japan through collaborations with other HGPI projects and by creating opportunities for opinion exchanges and discussions with organizations representing people affected by mental disorders from abroad.
As part of this vision, we have started publishing a series of interviews featuring people affected by mental disorders. By incorporating their honest opinions in the aforementioned policy proposal and by disseminating their perspectives in both Japanese and English, we will contribute to the creation of mental health policy that further improve conditions and quality of life (QOL) for people affected by mental disorders in Japan.
■ Interview 2: Mr. Yasuhiro Obata (Secretary General, The National Federation of Associations of Families with The Mental Illness in Japan (Minna-net))
“Placing Mental Health at the Center of National Policy for Harmony between the Healthcare System and Communities”