Considering the Implementation of Japan’s CRPD Concluding Observations from the Perspectives of Disability Studies and Tōjisha Kenkyū”

Shinichiro Kumagaya*

* Professor, Research Center for Advanced Science and Technology / the University of Tokyo,
Chair, Policy Commission of Disability, Cabinet Office

Thank you for the introduction. I’m Kumagaya. Today, in the first part of my talk I would like to discuss the policy progress of the Japanese government concerning the implementation of the Convention on the Rights of Persons with Disabilities (CRPD) and introduce several issues that remain to be addressed based mainly on a recently published paper by Ishikawa Jun, a former chairperson of the Committee on Policy for Persons with Disabilities.
In the second part, from my own perspective as a researcher, I would like to then propose several topics of discussion concerning how disability studies and Tōjisha-Kenkyū¹⁾ can contribute to finding solutions for some of these problems.
I am a pediatrician and university faculty member who has cerebral palsy, and I use a wheelchair in my day-to-day life. I work and conduct daily activities using a personal assistant. At my university, I specialize in tōjisha research, a unique form of community-based participatory research that originated in Japan.
Based on Ishikawa’s work, I would like to look back at the CRPD initiative, which became a turning point in Japanese policy regarding persons with disabilities, from its initial stage. As you may know, the CRPD was adopted in December 2006 and came into effect in May 2008, and Japan became a signatory in September 2007. Some groups of persons with disabilities opposed early ratification, however, based mainly on the lesson of what had occurred surrounding the Convention on the Rights of the Child when a rush to ratification prevented domestic systemic reforms from moving forward. This determination was borne out, and later reforms of the Basic Act for Persons with Disabilities, enactment of the Act for Eliminating Discrimination against Persons with Disabilities, and establishment of important policy committees were undertaken. Regarding provisions in domestic law, the Committee for the Reform of Policies for Persons with Disabilities was established under a Democratic Party administration, and first and second opinions were collected in 2010, both of which supported a reform of the Basic Act for Persons with Disabilities and enactment of the Act for Eliminating Discrimination against Persons with Disabilities. Regarding the reform of the Basic Act for Persons with Disabilities, three points were raised in 2011. First, to introduce a definition of persons with disabilities based on the social model of disability. Second, to stipulate a duty to provide reasonable accommodation. Third, to establish the Committee on Policy for Persons with Disabilities within the Cabinet Office to oversee the formulation, implementation and monitoring of a basic plan for persons with disabilities.
The Committee on Policy began by establishing a prohibition of discrimination subcommittee, and in September 2009 collected opinions on anti-discrimination legislation. In June 2013 the Act for Eliminating Discrimination was put in place, and the cabinet office was obligated to establish a basic policy. One of the major points of contention in the initial debate was support for individuals expressing their own will in the context of reasonable accommodation for people with intellectual, developmental, and mental disabilities. The CRPD was then ratified, and a domestic monitoring framework was put in place, but this then became a major issue to be addressed. On January 20th, 2014, Japan ratified the treaty and the Committee on Policy for Persons with Disabilities was designated as a monitoring framework independent of the government. This was limited, however, to monitoring the implementation of the basic plan for persons with disabilities.
In May of 2015, on the occasion of his second invitation [to Japan], Ronald McCallum, who was Chair of the Committee on the Rights of Persons with Disabilities, provided an opinion asserting that the degree of freedom of the activities of the Committee on Policy as an independent monitoring framework should be expanded. He emphasized that funding should be given to allow organizations of people with disabilities to produce reports in parallel, and that the Chair of the Committee on Policy should be allowed to speak independently when engaging in constructive dialogue. The timing of the Committee on Policy receiving this opinion was during the interim monitoring of the third basic plan, but the committee addressed themes thought to be the point of the CRPD such as assistance in expressing one’s will, assistance in transitioning to living in the community, an inclusive education system, employment, and information accessibility as major issues to be addressed, and held working sessions on each of them. Ultimately the understanding of the Committee on Policy regarding the text of the treaty considered in these sessions was submitted to the Committee on Rights by the Committee on Policy independently of the government report.
When the Act for Eliminating Discrimination against Persons with Disabilities was reexamined three years after having been passed, the major topic of debate, if I may diverge slightly, was making it mandatory for private corporations to provide reasonable accommodation. At first there was opposition from business groups, but after debate, hearings, and analysis of actual cases in the Committee on Policy, the Secretariat of the Cabinet Office solidified its decision to impose this obligation. In the revised basic policy, the legal interpretation was clarified, and it was explicitly stated that different treatment because of things like using supports such as a wheelchair, assistance dog, or being accompanied by a helper, while being categorized as “related discrimination,” is nevertheless a type of unjust discriminatory treatment. It also made clear that environmental improvement and reasonable accommodation are complimentary and function together to advance the elimination of social barriers.
Then, as is well known, in September 2008 Japan had its first inspection. This was carried out in Geneva. The Committee on Policy submitted its opinion to the government in June 2006. As I stated earlier, this was then sent to the Committee on Rights, and Ishikawa, Chair of the Committee on Policy, was given an opportunity to speak at this venue for constructive criticism from the standpoint of a monitoring framework independent of the government. One of the main concerns highlighted by the government committee was a lack of consideration of improvements toward a system of self-determination with assistance. In concrete terms, this was the problem of the adult guardianship system. The second concern was involuntary hospitalization of persons with mental disabilities and the lack of a roadmap for physical restraint. The third was the paradigm shift from separate to inclusive education being too slow. These were the three main points.
The Committee on Policy, a committee of the governing administration, presenting its concerns about government policy to the treaty body was considered greatly significant; this was seen as evidence that it was functioning as an independent monitoring framework. This has continued to the present, with the Committee on Policy monitoring the achievement status of the 5th basic plan for persons with disabilities. For each plan, while elucidating the corresponding clauses of the Basic Act for Persons with Disabilities and the CRPD, it monitors the achievement status using “KPIs”²⁾.
Having given a broad account of developments thus far, I would now like to talk about what is needed and what should be considered from the perspective of tōjisha research and disability studies in regard to a few of the items highlighted in the Concluding Observations [of the Committee on the Rights of Persons with Disabilities’ Initial Report of Japan].
Paragraph 8c of the Concluding Observations states that disqualifying clauses based on “physical or mental disorder” should be eliminated from national and municipal legislation, along with derogatory language. An investigation by the Association to Abolish Disqualifying Clauses in 2001 found that while absolute disqualifying clauses had been removed from laws, relative disqualifying clauses through language such as “mental or physical disorder” had on the contrary increased. I myself began working as a doctor in 2001 when absolute disqualifying clauses had been eliminated, and I directly experienced how, in workplaces meeting certain conditions, a disability can be a kind of expertise that in fact improves the quality of medical care. What are these conditions, and what kind of concrete transformation must be carried out in the healthcare system? I think a useful resource when examining these questions is the perspective of HROs, that is, highly reliable organizations. HROs deal not only with healthcare, but also important infrastructure such as aircraft control systems. They are organizations that handle complex technology in situations where the slightest mistake or technical failure can lead to catastrophe. The people who work in these organizations have qualifications and certifications, and the public places a great deal of faith in them. HRO research pursues methods of maintaining a dynamic calm amid changing circumstances. Since this research pursues methods of realizing high performance organizations, it originated in a context unrelated to disability, but in recent years, mainly in the UK, HRO knowledge has increasingly provided insight in the field of employment support for persons with mental disabilities who require a high degree of assistance. Reflecting on my own experience, I feel that the hospital where I found it easy to work also satisfied the conditions of an HRO. After an organization called AHRQ published a white paper on HROs in 2008, this approach began to be actively employed in healthcare settings. Several frameworks have been proposed for improving HROs, including healthcare organizations related to public services where people with advanced qualifications work, but they are all composed and constructed out of the main strategies of leadership development, safety culture, data systems, training and learning, and intervention implementation.
There has also been effect verification research, and the four studies that implemented the most comprehensive and multifaceted HRO initiative among the 309 papers reported by nine healthcare organs saw a great reduction in “medical errors” or major safety incidents. Moreover, the effects of these initiatives increased the longer they were introduced, and it was reported that they were maintained for over nine years. What were the HRO principles that allowed these HROs to both enable the participation of persons with disabilities and maintain themselves as a high performance organization given a high degree of trust by the general population? Five such principles have been put forward, each of which corresponds to a particular organizational culture.
The first principle emphasizes the operation of the organization and corresponds to a culture of mindfulness that separates itself from misconceptions and bias. The second principle corresponds to a culture of justice in which mistakes are learned from, errors are not punished, reporting is encouraged, and there is collective responsibility and joint research at the level of the organization. The third principle opposes simplification and corresponds to a culture of customization that seeks creative approaches without simplifying complex realities. The fourth principle increases resilience and corresponds to an agile culture that responds promptly to indications of abnormality. The fifth principle emphasizes expertise and corresponds to a culture of humility in which the judgement of the person with the most expertise or specialized knowledge is prioritized, regardless of rank within the organization. Drawing on my own case, I will examine how each of these principles is connected to the conditions that allow for the active participation of people with disabilities who have expert knowledge and qualifications.
I will start with the culture of mindfulness. “Mindfulness” refers to a culture that does not overlook data that are outside the organization’s shared expectations, that is, unexpected from the perspective of the explicit and implicit experience handed down from senior members. What is important in conjunction with this is a culture of sensemaking in which unexpected data are treated as resources for updating expectations rather than being swept under the rug. I call these two approaches combined a “culture of research.” Places where persons with disabilities work must be extraordinarily creative. Because persons with disabilities may not be able to work well while sticking to the established ways of doing things, the implementation of a culture that seeks innovative solutions within organizational culture is crucial.
Next, I will turn to the culture of justice. To give an anecdote from my own experience, when I was a medical resident, I couldn’t take blood samples from small children very well. The textbook had photographs and text explaining how to take blood, but these meticulous instructions were designed for the majority. I would stop at a dollar store every day after work to buy various tools, and eventually I built myself a device that enabled me to take a blood sample by myself. When I approached a child’s bed with this device on my knees, my colleagues, my supervisor, and the children’s parents stared at me with evident concern that I would fail. One of the characteristics of my body is that my muscles tense up from psychological stress, so in such an environment I couldn’t move the same way I usually did when I practiced, and I failed to perform the blood draw in repeated attempts. Each time I failed I would go back to the dollar store and try to improve my device, but rather than increase its functionality these augmentations only made it more bizarre. I got to the point of wondering whether my decision to become a doctor itself was egotistical and went against justice or what is right. Around this time my supervisor asked if I would like to try moving to a different hospital. The hospital he suggested was very busy, so I wasn’t confident, but I transferred anyway, having resolved to give up on being a doctor if I could not succeed there. At the busy hospital to which I had been transferred, the overwhelming volume of work meant nobody could get by on their own, and there was a culture of having to help each other. The established culture was one in which, rather than standardize the ability of the staff, everyone knew each other’s strengths and weaknesses; the person who first discovered an unexpected problem became an improvisational leader, and this leader would then put together an improvised team of requisite members based on their knowledge of what each person was good or bad at. Within this organizational culture, I was just one of many doctors who weren’t necessarily good at everything. Wanting to get me working as soon as possible to reduce his own duties, my supervisor put me in charge of taking blood samples for a whole day, calling it “intensive blood sample training.” At that point I had not succeeded in taking a blood sample even once, so I was terrified. I told him it was impossible, but my supervisor, who was very good taking blood samples, said, “Kumagaya, even I am guessing when I stick it in. I don’t always get it right. Just give it your all without hesitation. I’ll take responsibility.” Hearing these words, all the tension left my body, and I succeeded in taking a blood sample for the first time. Various workplaces have a limited period or space in which new staff members can grow through trial and error without being afraid to fail. In technical jargon, this is called an “experimental zone.” By confessing that he himself was not infallible and sometimes failed, and by declaring that the organization as a whole, or, in other words, he as a leader, would take responsibility for the failures of its members, this supervisor can be said to have secured an experimental zone for me. Unfortunately, organizations that look for an individual culprit when unforeseen incidents or failures such as this occur and proceed to punish or exclude this individual once they are found are not uncommon. Such organizations come to see human beings as fallible and untrustworthy and build up rules and monitoring systems to constrain them. People therefore come to fear punishment and hide failures when possible, and this in turn deprives individuals and the organization of the opportunity to learn from small mistakes and failures. As a result, even if the members of the organization are replaced, the same major accidents are repeated. A culture of justice, on the other hand, praises the reporting of unforeseen incidents and failures, takes collective responsibility for the mechanisms that cause them as an organization, and studies them without abstracting their complexity. Only in such a culture can an experimental zone be secured, and both individuals and the organization as a whole become able to learn from mistakes and grow through taking on challenges without fear of failure. I’ve come to feel that without this kind of space it is quite difficult to work while having a disability.
Next is a culture of customization. When I was a medical resident, a different supervisor said to me, “A hospital where you cannot take a blood sample is a hospital that cannot save patients.” What did the supervisor mean by this? The essential purpose of taking a blood sample can be stated as, for example, the three highly abstracted goals of not injuring the patient, taking the sample quickly, and not ruining the blood sample, and if I did not fully commit to these goals and flexibly and creatively customize the method of taking a sample to accommodate my own body, I could not have done my job. The result of this, as you see on the bottom left, was the invention of a method of taking blood samples while holding the needle in my mouth. This kind of culture that distills the essential goal of a task and customizes the methods of attaining it doesn’t apply only to a doctor with a disability like me – there are patients with disabilities, diverse genders, diverse sexual orientations, and diverse cultures, so patients also have diverse backgrounds and characteristics. This kind of customization is also important if we are to provide meticulous healthcare to this diversity of patients. A hospital whose entire staff only knows by-the-book healthcare described in textbooks cannot address diverse patients. In other words, a culture of customization is a necessary condition for the inclusion of both diverse healthcare professionals and diverse patients.
Technological advances change the technical standards, that is, the essential capabilities, required of healthcare professionals. The framework of “reasonable accommodation” also changes. Examples of this include hearing aids that transmit sound even to people who cannot hear and wheelchairs designed for surgeons that allow them to rise to a standing position. Personal assistants, like the ones I employ, also expand work opportunities for healthcare professionals with disabilities.
Next is a culture of agility. It is said that the secret to successfully transforming into an agile organization capable of rapidly responding to a crisis lies in increasing psychological safety. Psychological safety is the belief that you will not be punished or rebuked by your team if you communicate your ideas, questions, concerns, or failures. This psychological safety is essential for connecting diversity to performance. Research on research and development teams at pharmaceutical companies has indicated that teams with a high degree of diversity tend to have lower performance. When it comes to teams with high psychological safety, however, the higher their diversity the higher their performance is found to be. In the places where healthcare is provided, too, psychological safety is known to increase staff wellbeing, decrease stress, and lead to an improvement in quality through learning from failures. A culture where people speak forthrightly and openly rather than keeping their thoughts to themselves or making veiled comments is crucially important for working while having a disability.
Finally, there is the culture of humility. Along with the high economic cost of healthcare and inadequate services for persons with disabilities, the WHO has also cited healthcare professionals having inadequate knowledge regarding the needs and experiences of persons with disabilities as one of the causes of disparities in health between persons with and without disabilities. There is data showing that persons with disabilities are more than twice as likely to feel a healthcare provider’s skills are inadequate, four times as likely to feel they have been treated inappropriately, and three times as likely to feel they have been refused healthcare [as persons without disabilities]. When the doctor has the same attributes as the patient, service satisfaction, adherence, and prognosis all tend to improve. This is called the patient-doctor concordance effect. For example, the myocardial infarction survival rate is lower for women than for men, but when the gender of doctor and patient is the same the survival rate increases. In other words, the fact there are more male than female doctors may be one of the causes of a lower survival rate in female patients. Expanding on this, there is also the assertion that increasing the number of doctors with disabilities may decrease the disparity in health between persons with and without disabilities. Many healthcare professionals have a stigma towards persons with disabilities, and based on intergroup contact theory it is known that the most dramatic learning effect for reducing this stigma is not contact between doctors without a disability and patients with a disability, but rather contact on an equal footing as colleagues between doctors with and without a disability. This implies that having a disability is itself a kind of expertise and can lead to an improvement in the quality of healthcare. “Disability expertise” is a concept put forward by medical anthropologist Cassandra Hartblay, and refers to the knowledge and skills persons with disabilities acquire amid conflict with societies and institutions that exclude them.
The importance of humility has been highlighted in recent organizational science. Here “humility” means first making an effort to take an accurate view of yourself in regard to your own strengths, vulnerabilities, and non-discrimination and second acknowledging the strengths and contributions of other people. Third, it also means teachability in the sense of a learning posture and atmosphere that encourages teaching. It is quantified in terms of these three factors. The second factor, persons without disabilities acknowledging the strengths and contributions of persons with disabilities, is particularly essential for the demonstration of disability expertise. I think the words of my two supervisors I quoted earlier are examples of a culture that accepts disability expertise. The role of leaders is crucial to fostering a culture of humility. In the study we conducted, we found that when there are humble leaders in a company, psychological safety increases and the numbers expressing employee presenteeism, that is, what percentage of their own ability in their domain employees feel they are unable to demonstrate, go down. In government organizations, too, humility in leaders was also found to improve employee engagement and mental health through psychological safety.
To summarize what I have discussed so far, public institutions where people with qualifications work can be described as organizations that must work towards being HROs. We are conducting intervention research based on the hypothesis that by introducing tōjisha research we can increase the humility of leaders, and by raising the level of psychological safety we can help organizations get closer to being HROs.
As we have seen, far from being contradictory, aiming toward the realization of an HRO and aiming toward the inclusion of persons with disabilities, that is, persons with disabilities who have disability expertise, are approaches with an extremely high degree of compatibility. Services provided by public institutions must be inclusive of users with disabilities. The demonstration of a concordance effect through the presence of qualified persons with disabilities is crucial to this end, and since stipulating disqualifying conditions in general can be said to invite a decrease in the quality and inclusivity of services, it can be concluded that this practice must be abolished.
Moving to the next topic, an issue highlighted in the Concluding Observations was the need to build a community foundation and promote support and independent living along with prohibiting involuntary confinement for mental disabilities and integrating mental health and general healthcare. For example, there are 800,000 people who have been diagnosed with schizophrenia in Japan, for 30% of whom, that is, 240,000 people, the effectiveness of existing medication is limited, and for 15% of whom, that is, 120,000, an effect is not found even when they take clozapine.
As I will discuss later, there are several menus of support that can enable tōjisha for whom treatment with medication is ineffective and who live with hallucinations or delusions to live in the community. Despite this, the state of mental healthcare in Japan is such that long-term hospitalization and restraint in isolation without consent has been normalized. At present there are roughly 170,000 people in Japan who have spent at least one year living in a hospital. My field of expertise, tōjisha research, emerged in the context of support for the daily life and employment of people with mental disabilities in the community after long-term hospitalization. Here I would like to present a case study. A-san, who had been suffering from paranoid delusions, inflicted injuries on his mother, and was hospitalized under the Medical Treatment and Supervision Act. On the 96th day of his hospitalization he was prescribed clozapine, but while his symptoms improved, his powerful, fantastical delusions of battling yamanba³⁾ continued to impede his daily life. There is a common evaluation scale used by all treatment and observation wards in Japan as a standard for releasing patients. Looking at the changes in A-san’s scores during his hospitalization, there was little improvement after the administration of clozapine on day 96. Following the introduction of tōjisha research on day 929 during his third year, his scores fell dramatically and his condition became stable. A-san was then able to leave the hospital and successfully transition to life in the community. What exactly was this tōjisha research? It was a simple approach of visualizing A-san’s subjective experiences through one-on-one interviews and joint research with the [ward] staff and proceeding while consulting with the patient himself. The primary aim of the staff was not to evaluate A-san’s experiences in terms of illness or abnormality, but to understand and share these experiences as a whole, and they adopted a stance of taking an interest and asking detailed questions. This is the complete reverse of what is advocated in old mental health textbooks in which it is written that we must not ask patients about their hallucinations or delusions. This approach differs from both the healthcare of the past that tried to change the tōjisha and the tōjisha movement that tried to change the environment, seeking instead only to understand and share the tōjisha’s experiences, and can be described as the “knowing and sharing paradigm.”
Amid taking an interest and asking about A-san’s experiences, while a complete picture of these experiences gradually emerges, at the same time, through this process of asking and listening, A-san’s experiences also change – this is the true value of tōjisha research. What tōjisha research showed was that for over 20 years A-san had been fighting against dozens of yamanba. I think this must be very hard. The yamanba had been constantly crossing A-san’s boundaries and excessively interfering in his life, making it impossible for him to have a job and breaking his plastic models. Through repeated research efforts, we learned that A-san had comrades on his side, like Gundam, an older female relative, or voice actors, even in the world of his hallucinations and delusions, that is, in his “other world.” Forming a team with these comrades, he shifted his relationship with the yamanba from fighting to negotiation. This kind of team approach is also a concept employed at the treatment and supervision ward, and it is possible that the actual community around A-san was reflected in his “other world.” One day, A-san’s comrades from his other world suggested he make peace and stop fighting, and when he said it was over and they were under police supervision not to fight anymore, the yamanba apologized and surrendered. Everyone in the ward seems to have celebrated this moment the fighting ended with tears in their eyes. The yamanba sometimes still appeared, however, and A-san would resist them together with his comrades from the other world. A staff member said, “Maybe the yamanba want to be friends with you,” but A-san replied, “They absolutely do not.” Surprisingly, however, after this one of the yamanba proposed to him. Here the relationship with the yamanba changed from hostile interference in which they crossed each other’s boundaries to friendly relations in which boundaries were respected. In the end, A-san indicated that even he himself respected the yamanba’s efforts, saying, “Sometimes it’s better to let things go. To only fight is not the way.”
According to epidemiological research on the auditory hallucinations , 17% of children aged 9 to 12 and 7.5% of children aged 13 to 18 have experienced auditory hallucinations. In other words, experiencing auditory hallucinations is about as common as being left-handed. However, most people who experience auditory hallucinations build a friendly relationship with them, and only 5.3% have been bothered by voices in their daily lives. The difference between those who are bothered by voices and those who are not lies in the character of the voices they hear. People who believe the voices are extremely powerful and knowledgeable and cannot be controlled respond with fear and resistance as soon as they perceive the voices to have malicious intentions. On the other hand, those who interpret the voices as deeply compassionate have a high probability of getting along well with them.
Here, rather than regarding auditory hallucinations as something to be gotten rid of or pathological as in the past, an approach of considering it sufficient to change the character of the hallucinations from hostile to friendly comes into view. In avatar therapy, which has received a great deal of attention in the past ten years, an avatar is created based on asking the person having auditory hallucinations about the character of these hallucinations. The therapist then becomes the person in the avatar and converses with the person having hallucinations, and this therapy gradually deepens mutual understanding between the person and their hallucinations and shifts their relationship toward being friendly. This approach is significantly more effective than the counseling used in the past, but the fact that when the therapy stops the relationship returns to a hostile state is an issue that remains to be addressed. Behind the effect of avatar therapy not lasting lies the fact that the relationship with auditory hallucinations reflects relationships with real people. If there are once again hostile interpersonal relationships when it is decided that the person with hallucinations will leave the ward and return to the community, sooner or later their relationship with their hallucinations will revert to being hostile. A social model approach that targets the society around the person in question rather than them or their hallucinations is therefore essential. For example, if doctors and support providers have an excessively interfering, dominating relationship with the tōjisha, then their hallucinations will take on a dominating character in which they order and judge the tōjisha without respecting their wishes. Through tōjisha research, the staff at the ward adopted a stance of interacting with A-san on an equal footing as a co-researcher, and A-san’s relationship with the other people around him also changed. This then brought about a change in his relationship with the yamanba. To support the cessation of long-term hospitalization and the transition to living in the community, it is therefore necessary to implement tōjisha research not only in the hospital but also in the community. Urakawa, a town in Hokkaido where tōjisha research has been widely implemented, has succeeded in eliminating long-term psychiatric wards. Stanford University Professor Tanya Luhrmann has reported that while American auditory hallucinations tend to be aggressive and negative, those in India and Ghana are often supportive and positive. The content of auditory hallucinations is affected by the culture surrounding the person who has them. Auditory hallucinations are said to be closer to thoughts than perceptions; thoughts are nothing other than auditory hallucinations heard in one’s own voice. Just as a certain number of people suffer from hostile auditory hallucinations, there is also a certain number of people who harshly criticize themselves and get caught up in negative thoughts when they are alone. As the political philosopher Hannah Arendt observed, hallucinations and thoughts reflect your relationships to real people and the community around you. Rather than saying hallucinations are pathological while thoughts are normal, it therefore seems better to say that both hallucinations and thoughts are normal, and look for a difference in whether their content is malignant or not.
It is important to develop a new community-based avatar therapy that combines avatar therapy with tōjisha research targeting real interpersonal relationships and a narrative community, and right now we are engaged in joint research involving tōjisha, support providers, and VR researchers. One approach that must be pursued is not distinguishing between mental healthcare and other, general healthcare, and I think the idea that there is no great difference between thoughts and hallucinations is an insight that can ground this view. In this research, we plan to use VR within a narrative community as a common language and medium of dialogue for mutual communication of struggles and experiences and verify the effectiveness of this approach.
Looking around the world, we also find the “hearing voices movement (HVM)” in the Netherlands as something similar to tōjisha research. HVM gave rise to a new form of therapy called “talking with voices.” In this therapy, the therapist poses questions not to the person themselves but to their auditory hallucinations, and the person then listens to what their hallucinations say and conveys it to the therapist. This has been found to be extremely effective.
I would like to conclude by discussing several other issues pointed out in the Concluding Observations. Paragraph 10b states that the Tsukui Yamauri-en case should be reviewed from a perspective based on discrimination against persons with disabilities, whether referred to as eugenic thought, anti-person with disabilities thought, or ableist thought, and legal consequences for those promoting such views in society should be ensured. Regarding this point, we have allied with Kanagawa Prefecture and members of People First, and the Kanagawa Prefectural Welfare Organization, to be established in April 2026, is expected to address this issue. One of the important insights our work has produced is that, regarding Tsukui Yamauri-en, support providers have a strong stigma towards tōjisha with autistic tendencies. At the extreme end of this kind of attitude there are criminals, but it has come to be known and understood that when people work in a place with low psychological safety discrimination and prejudice is strengthened. In other words, rather than simply saying the workplace and those who committed crimes were bad, considering the situation from the perspective of whether the workplace had high psychological safety is a task that remains to be addressed.
Regarding the realization of inclusive education that is also demanded by the CRPD, this too is essential to eliminating social stigma. This stigma has profound effects on employment and health. According to Gordon Allport’s intergroup contact theory, only contact that meets four conditions is significant in reducing stigma. The most important of these conditions is contact in a position of equality. In the case of inclusive education, too, when it is conducted in a form that is not based on equality it can conversely increase stigma, and I think Allport’s four conditions are extremely important in calling out this kind of phony inclusive education. We believe it is important to realize social model-based inclusive education that leads to changes in the school system without individuals blaming themselves when difficulties occur. This means a culture of students’ opinions changing schools taking root. This kind of culture has been found to have a positive influence on all students, whether or not they have disabilities. In research conducted together with Tokyo Metropolitan Institute of Medical Science targeting junior high schools and high schools in Tokyo, we reported that the implementation of this kind of social model markedly reduced depression and bullying among students.
Finally, I believe that close collaboration between the community of persons with disabilities and educational institutions such as universities is extremely important in realizing the spirit of the CRPD. The Tokyo University Center for Coproduction of Inclusion Diversity and Equity, of which I serve as Vice Director, was established in April 2024. At this center, research and practice are brought together, and research jointly produced by researchers and tōjisha through special tōjisha discussion meetings is promoted. It is a center where the “nothing about us without us” approach is developed in research activities. These meetings are composed of members of groups of persons with diverse disabilities with consideration being given to gender balance. Each raises a research topic considered to have a high degree of priority, and we plan to collaborate with Tokyo University researchers in various fields.
Thank you for listening to my talk.

Notes

¹⁾ Tōjisha-Kenkyū roughly translates as ‘the science of the self’ or ‘self-supported research’, in which people with disabilities and/or mental illness learn to study their own experiences. For further information regarding Tōjisha-Kenkyū, please consult the following references. Ayaya, S. (2025). Tōjisha-Kenkyū on Autism in Japan: Against Epistemic Injustices and Tokenism. Journal of Social Issues, 81(4), e70026. Ayaya, S., Kitanaka J. (2023). Tōjisha kenkyū. Aeon, June 12. https://aeon.co/essays/japans-radical-alternative-to-psychiatric-diagnosis
²⁾ Key performance indicators
³⁾ Yamanba, literally “mountain crones,” are supernatural entities in Japanese folklore. They usually appear as elderly women and are found in wild or mountainous areas.