Through Local Support in Daily Life
I am currently working at the Center for Independent Living (CIL), a non-profit organization for persons with disabilities in Higashiyamato city, Tokyo. The CIL works for PWDs rights to live with fulfilment by providing counseling supports and various services that enable an independent life in the local community regardless of the type of disability. It is necessary to overturn false preconceptions to ensure that everyone can live a fulfilling life as an individual in the community.
For example, it is often said that assisted living with the support of personal assistants can't be called "independent living." But when the personal assistant(PA) supports PWD to cook meals, wouldn't it mean the PWD cooks her/himself? In history class, we learn that Shogun Hideyoshi Toyotomi built the Osaka Castle, but did he actually found the castle tower and carry the boulders for the walls all by himself? No, Hideyoshi only gave instructions. If I instruct a PA to use the carrots and onions in the refrigerator to make curry, why can't it be considered something that I cooked? Just like this, if we slightly change our view point, we can come to understand that just because someone has a disability, that doesn't mean he or she is a special person that needs protection. Rather, it should be recognized that he or she has the same human rights, and that life for PWD is difficult not because of individual personal problems, but due to the obstacles which our society creates. For 18 years, since 2001, to convey this message, I have been involved in regional activities as a "fellow citizen" living in the local community and have engaged with others.
However, it does not seem that discrimination against persons with disabilities has declined in the local community. On the contrary, it appears to have become more ingrained and intractable as discrimination against those with disabilities steadily spreads. In the past, persons with disabilities were considered to be troublesome and a nuisance and faced outright discrimination every day. In 2006, the United Nations adopted the Convention on the Rights of Persons with Disabilities, which was ratified by Japan in 2014, and the Act for Eliminating Discrimination against Persons with Disabilities was also established in Japan. Furthermore, on the occasion of the Tokyo Olympics and Paralympic games that year, the slogan "barrier-free mindset" became widely known. Through these years, I expected our lives would face far fewer difficulties, but the reality has been completely different.
Evolved Discrimination: The Birth of "Compassionate Discrimination"
One characteristic of a recent common discrimination pattern comes from pities and compassions for PWD which are blindly one-sided emotions, and people have no idea that it's also discrimination. Let's take prenatal diagnosis, for example. After being informed that their unborn child has a disability, over 95% of pregnant women choose to have an abortion. Concerning that the child could have serious disabilities that could also shorten life span and that the child would be exposed to much discrimination, they choose to have an abortion "for the child's sake" instead of giving birth in this difficult world, which would only be a burden for the child. Many institutions and psychiatric hospitals would insist that this is done for the "sake of the child," and the children with disabilities are "separated" from local areas for reasons of "care and supervision." No one wants to spend an entire life in such a place. However, there is nowhere in the "local area" where they can live with a sense of security, which also means they have no choice.
According to Article 2 of the Convention on the Rights of Persons with Disabilities (CRPD) mentioned above, "discrimination on the basis of disability" means "any distinction, exclusion or restriction on the basis of disability, including denial of reasonable accommodation." "Exclusion" is easy to understand because it tells the other "to get out of here and go somewhere else." "Restriction" refers to imposing conditions on those with a disability which would not apply to someone without a disability. One example would be requiring children with a disability to be accompanied by a parent if they wish to attend a local school. As for "distinction," this refers to categorize particular people who meets certain conditions (based on the judgement of others, not based on their desire), and treat differently from others in the mainstream. For some reason, in Japan, this "distinction" is not viewed as "discrimination," but rather as "service."
Not to daycare centers or kindergartens, but to Child Development Support Centers
Not to local schools, but to the Special Needs School or Classes
Not to after-school activities, but to After-School Day-Services
Not to the main companies, but to special subsidiaries
Not to apartments, but to group homes
To facilities for persons with disabilities, psychiatric hospitals, extended care hospitals ....
From beginning to end, a life of a person with disabilities is separated, protected and controlled by our society. Even in a community, we are always told "It would have been better if you had not been born." "You serve no purpose in society, so prolonging your life is meaningless" (accompanied by legal groundwork for the rights to die, death with dignity, and euthanasia)." This kind of idea is common even today and claims to be in the interests of persons with disabilities, which makes it hard to combat. After all, those values come from the bottom of their kind heart, not from any bit of animosity. Most people are familiar with the civil rights movement in the United States that protested against the discrimination that dictated separate schools, public toilets, and bus seating for African-Americans in the past. Nevertheless, they do not see the separation of people with disabilities as discrimination. This difference is said to be "because those with disabilities cannot act the same way as those without disabilities."
To Eliminate "Compassionate Discrimination"
What should be done to eliminate this sort of "compassionate discrimination," this "discrimination that is deemed to be good"? I started to be seriously concerned about this around 2015. I reached an answer that dealing with this problem on a fundamental level would require some approach to the current educational system which basically causes a segregation system. In the past, students in Japan with severe disabilities who could not attend school were allowed postponement of enrollment or exemption, but in 1979, education became compulsory for all children with disabilities. Nevertheless, children with disabilities were, in principle, required to attend special needs schools (at present, special support schools). Born in 1977, during this trend of obligatory enrollment, I rejected this official view and decision of the school board and sought to enter a school in my district. In contention with the school board and the school, I attended regular classes all throughout my school life, from elementary to university, but this was an exception at the time. In Japan, in line with ratification of the Convention on the Rights of Persons with Disabilities, the Enforcement Order for Education was also revised in 2013 [Public Notice of the Ministry of Education, Culture, Sports, Science and Technology No. 655 of 2013]. In the choice of school, the wishes of the parents and students have been given as the highest priority, but mandating schools for special needs children for decades has had a strong influence that is hard to change so that even now children with disabilities are enrolled in special support schools and classes as if that is the ordinary thing to do.
Meanwhile, as part of "barrier-free education of the heart and mind" in preparation for the Tokyo Olympics and Paralympics, or even in textbooks of the ethics class taught in schools, local schools have been teaching students to extend a helping hand to persons with disabilities who seem to need help in public. Several times a year, I am asked to visit local schools to acquaint students with the daily life of persons with disabilities. But if it were common and natural for children with disabilities to attend the same school as other students, it would not be necessary to use those textbooks, to invite guest speakers with disabilities to study how to approach persons with disabilities. In effect, students are taught that "it is better for students with disabilities to attend special support schools so they can study in a place that accommodates their disabilities at an appropriate pace." As a result, children of the same generation are taught that those with disabilities "are in a totally different category that they cannot relate to" and thus controlled to feel that they are something special. If they suddenly encounter a person with disabilities, after the graduation, with only such abstract images of persons with disabilities, they will not be able to react properly and naturally. At a loss to respond, they would ignore the encounter, pretending not to have seen the person, and even wish people like those with disabilities didn't exist. It can't be helped because of their background. To reverse this issue, it is important for diverse types of children to spend time together from an early age. People are different and it is only natural that they are. If a person experiences difficulty or has a particular weak point, someone who is able to help should give a helping hand. This is something that we should learn not in our heads, but through our bodies and experiences. I think the solution is "slow and steady."
The Right to Be Asked "What Would You Like to Do?"
I have made up my mind and I began to focus on promoting inclusive education. This decision marked the start of an effort to study its various sources and aspects, undertake activities to convey its importance, provide consultation to help parents of children with disabilities who would like to attend local schools, and encourage the government to take action.
When it comes to "inclusive education," there is another point that is often misunderstood. Parents, in particular, tell me "even if my child enters that school now, he won't be able to keep up with classes, which will lead to bullying and end up as a bad experience." "Inclusive" means "without excluding anyone," but inclusive education does not mean just tossing children with disabilities into the current school education system. It is a duty of schools to change and adjust the traditional way of teaching and materials based on the child's characteristics and needs and to ensure the right of all children to spend time with other children of the same generation in the area.
Although I always attended regular classes, I have never felt that I had received an inclusive education. In my elementary school, one condition for acceptance to the school enrollment was that I should be accompanied by my mother, and I was always given the lowest grade in physical education class up until high school. Not even speaking of grades, many schools did not accept children with disabilities in the first place, so I almost had no choices available when considering the school to go on to the next level of education. Even in the school that admitted me, I was told that because I was a person with disabilities, there were activities in which I could not participate. In other cases, I was told that I could participate if I didn't mind accepting many restrictions. This particular situation is called "integration." In fact, I was simply being forced to live within the given framework.
When I had somewhat resigned myself to living under these restrictive conditions, I had a shocking experience. As a university student, I got an opportunity to go to and live in the United States to study. Before the English language learning program had started, I was called to the office of Student Disability Services and asked what and how I would like to accomplish at the university. I had never been asked such a question in Japan, so not knowing how to answer, my mind went blank at first as I was confused. Then as the meetings continued and I was answering each of the question on specific issues one by one: Did I have any requests regarding classroom location? What sort of desk was the easiest to use? What means of transportation did I want to use for activities off campus? We discussed specific issues and nearly all my needs were met. Today, this is considered reasonable accommodation for inclusive education, which has become an international standard, but at first, I was simply astonished. Thanks to adequate preliminary dialogue and preparations, I had such a stress-free, pleasant time that I almost forgot that I was someone with disabilities. Once again, I realized how much I had been denying my true feelings, compromising the unacceptable situations, and deceiving my feelings in Japan. After returning to Japan, I decided that I would express my wishes more regardless whether it would yield successful results and that is how my activities are in progress today.
It's OK even if You Can't Do It--We'll Cover for One Another
I graduated from university in 2001, and in approximately twenty years since, the structure of society that divides people into those who "can and cannot" has not changed at all. Rather, this tendency has become even more pronounced. It not only divides us into people with or without disabilities, but it also creates a hierarchy and weaken solidarity among those with disabilities. Regardless of whether their child has a disability or not, parents want their child to become more capable, even just a little. These feelings of parents often stem from meritocratic desire which assure that "my child still does better than that one, so it is OK" or "At the very least, I want my child to be able to do what that child can do." There are some societies that cater to this parental psychology and use it to their advantage. It is important to realize that they should not wish for these divisive classifications themselves; we need to be more aware of the reality that they (persons with disabilities and their families) have been taught by society to have such wishes themselves.
Social trend are founded upon value standards of whether or not people are capable, and one example is the "massacre at the Tsukui Yamayuri En Care Center" in Sagamihara, Kanagawa Prefecture. The Internet was flooded with views that persons with disabilities are not productive and only create unhappiness, and their lives have no value, and it left society shaken. But please just imagine. The Jōmon Sugi or cypress tree on Yakushima Island is not productive at all--it has simply been on Yakushima, a UNESCO World Heritage Site, for a long time. Even so, it is visited and considered sacred by many people every year, who then return with feelings of courage. Mt. Fuji happens to rise up from the earth with a beautiful shape and symmetry, and this also leads to more mountain climbers to visit and often features as images for calendars. The ability to appreciate trees that are just growing and a mound of earth to such an extent is an ability only humans may possess. Now then, why can't people find value in people also for just existing and being there? Why don't we momentarily put aside our existing values that dictate that humans, by definition, must be able to talk, work, and do this and that? In school today, primary attention and value must not only be given to visible growth and development of students, characterized as acquiring the ability to accomplish something (making x into y or z). In today's world, it is also very necessary to be aware of distinct differences and to learn how to offset these differences with each other. I think children with disabilities and special needs will be the catalyst for such reformation in school, which will help society to be more open and comfortable space for anyone.
Hurdles to Overcome
Just as we hear that resolutions against global warming must be implemented now, I feel that unless we immediately start practicing inclusive education now, we cannot create a society that can accept diversity. There are, however, many hurdles that we must overcome.
First of all, there are extremely large differences in the understanding and awareness of inclusive education among regions, schools, and teachers. Under the Act for Eliminating Discrimination Against People with Disabilities, provision of reasonable accommodation in public institutions like schools is required by law. This law is not a local government regulation, but a national law. Furthermore, although the Convention on the Rights of Persons with Disabilities, an international human rights treaty of the United Nations, has a higher status than that of a law, it nevertheless does not have an effect on a daily life. For this reason, there are some teachers in local schools who protest and refuse to make this accommodation for students with disabilities, stating that they are already so busy that they risk death from overworking, and they cannot possibly work more to make adjustments for children with disabilities. Although the Convention prohibits separately educating children of the same age in the district, there is frequent misunderstanding. There are questions such as why children with disabilities want to attend local schools when the nation has prepared and built schools specifically for children with disabilities. The biased interpretation of local authorities seems to have given more bias to legal authority to the national level.
Next, there is an overly strong tendency to place importance on whether the person actually desires what is being proposed and offered. The Convention on the Rights of Persons with Disabilities indicates the highest priority to keeping children of the same generation together. It also advocates changing the school educational system so that they can all study together. Current school culture gives priority to synchronous learning in the use of the same teaching materials and concurrent group lessons. When this happens, students with disabilities and their parents become anxious that they may not be able to participate in the group. As a result, although it is only necessary for them to choose a school that meets their needs, the government authorities justify the construction of more special support schools and insists that this is "in accordance with the strong wishes of parents and child."
But is anything permissible as long as the children and parents approve? I am also managing a group called Co-net (ventilator users network), through which I came to know that in some regions with inadequate resources and information, parents cannot provide adequate care for their children once they are placed on artificial respirators, and the children must then live in long-term care facilities. Among those children, there are some who feel that they are bed-ridden for life, and without the physical ability or freedom to go out, and ultimately that there is no meaning to life. There also are those who say they want to die by asking someone to disconnect their respirator. In order to comply with this wish, a Death with Dignity Proposal is now under consideration. Or perhaps, this will be done out of "consideration." Why would no one care to research the reason for wishing? If we blindly accept it as the person's will, there is the danger that will even lead to death with dignity or euthanasia.
In addition, among those seeking to promote inclusive education, some cite such reasons as "when there is a child with a disability, those around the child become very understanding" or "being surrounded by healthy children helps the child learn lots of vocabulary." Those may be the case, but they should just be results and should never be their goals. This is similar to stating that we only support inclusive education because of its varied effectiveness, and then if these effects do not occur, they might decide that inclusive education is not really that necessary. Students attend local schools do so because they are local children.
Creating a Society Where No One is Left Out through Education
With Japan's ratification of the Convention on the Rights of Persons with Disabilities, the passing of laws in Japan, and the clear definitions given with regard to disability and discrimination based on disability, I thought that inclusive education as a right had come a long way. Putting aside the purpose or intent, it is rights; and regardless of who says what, while schools in the area are reformed, all children living there will be able to attend school in the district. However, due to the various reasons given above, I knew that this would not happen as I had expected. One remark by a linguistic philosopher made me realize something: Asserting your rights will not be effective because the other party does not regard you as the same human being. "For the other party to understand human rights, they need the ability to empathize with the position of those who are suffering from the experience and memories of infringement to their human rights." It is said that emotional education, which heightens the ability to empathize with others, is an essential, preparatory step to activating human rights. "So, is that where we need to start from?!" The realization came with a shock. At the same time, another concern came to my mind. It was the murder case of a mother who killed her daughter with disabilities in 1970. Those "sympathizing" with the mother's difficulties began a movement to exempt her sentence. I'm concerned that there is stronger sympathy for the perpetrator who was compelled to violate human rights than for the people with disabilities who have to endure difficulties. Our future actions will require maintaining a good balance between an understanding of rights and emotional education.
It may also be an opportunity to take another look at education and ponder what it really is. The current education merely consists of what is called "integration." It is not my intention to completely deny special needs education. Now that a treaty has been ratified, I hope for the teachers of special needs classes to return the knowledge and skills that they have acquired over the years to local schools in the region.
School is a miniature model of society at large. If schools cannot be an example of how society should be, society will not be developed either. The subject of inclusive education is not limited to education, but concerns society at large. The topic is not about the treatment of children, but is rather about adulthoods and how they should be as adults. In what kind of society can all people have a sense of self-affirmation and live a life that expresses their individuality? In what kind of society do citizens support one another in their strengths and weaknesses? It starts with education. How should society be? As a citizen and member of society, I want to contemplate this question and take actions.