|
|
 |
Principle of the Night Watchman Support Authored by KOHMORI (Nickname)
About the author: Male. Born in 1975. Since early childhood, diagnosed as possibly having autism, developmental retardation, minimal brain damage, and LD. Reached adulthood without any definite diagnosis accorded. Attended an educational and care institute roughly once a month while he was in the first to the fourth grade of primary school. Diagnosed as having Asperger syndrome (kind of autism) at the age o 26, while some experts indicate that he possibly has developmental coordination disturbance, or nonverbal learning disability (LD). At present, he teaches at a cram school while involved in activities by an autonomous group of people with developmental disorder.
The title “the Principle of Night Watchman Support” has nothing to do with Night Watchman State by Robert Nordic.
* Introduction
What prompted me to deal with the topic of “the principle of Night watchman support” was my encounter with a youth with developmental disorder a few years ago. While I met him no more than three times, what he told me about his upbringing has left me with a very striking impression, which lasts till today.
The youth was enrolled in a regular class throughout his school days, and was given support as a child with LD outside the school system. He told me that the social skill training (SST) and day care he attended gave him comfort and encouragement. On the other hand, however, he had to go through obnoxious and incessant bullying from grade to high school. While listening to what the very-gentle looking youth had to say, I felt that something was definitely wrong. I suppose that his family loved him dearly, and that those people who rendered him support outside the school tried as much as they could for him under the prevailing constraints facing them. I have no doubt whatsoever that they tried to help him. Yet, I cannot help feeling that something must be terribly wrong. What makes me feel that way?
“The Principle of Night Watchman Support” is a provisional answer that I worked out after giving a hard thought that feeling that I described earlier in order to address such issues as “what is the essential basic support that autistic people need?” and “what support should not be made available for them?” Since it is a provisional one, it is subject to possible correction in the future. Somebody else might easily argue against my theory. I will not, however, be able to work out and announce to the world, at least for now and in the foreseeable future, the theory that is superior, in terms of the magnitude of issues raised and their substance, to the “Principle of Night Watchman Support”. I will not be able to say, at least for now, more than what I am describing this time.
I expect that many people who are involved in supporting activities might call unreasonable the theory I have come up with, since I contemplate these issues independent from any specific theories of support. Yet, I deliberately have left my own theory intact, in the belief that it is worthwhile to review as to why such theories of support differ from the one that I, as somebody who has stake in this issue, have invented.
First of all, I have to admit that my proposal does not represent the thoughts on the part of many people with autism. Rather, I often describe in this paper the type of support that few people with autism directly demand from their supporters, or the one that autistic people themselves often overlook.
I hope that my presentation will serve as food for thought in one way or the other for those people providing support to others who have developmental disorder, even if they disagree with me.
(1) The support that “the principle of night watchman support” calls into question:
Before defining “the principle of night watchman support”, I need to explain clearly what type of support my principle calls into question and what points it intends to raise.
What is wrong?
I would like to explain as clearly as possible what I felt was wrong with the support given to the youth described at the beginning. For the purpose of explanation, I would introduce here a fable, which suddenly came to mind and which I believe worth quoting:
In the old days, when medical science was not fully advanced, there were in a village a number of children who were on the verge of death from bites by poisonous snakes. The doctors were sent for, and they discussed possible treatment. One doctor insisted that bleeding from the bite should be stopped, while another claimed that pain from the bite should be eliminated. A third one opined that a psychological shock from snakebite should be treated. The last one said that the first thing to do was to make invisible the scar, which he described as ugly.
They did not reach any agreement, and decided that each doctor would give the patients the treatment that he believed in. It is obvious what later happened to those bitten children.
Most people would immediately realize that something is wrong with what these doctors did. We have to, however, go further and identify the problem in order to learn a valuable lesson from the story. We need to further scrutinize what was really wrong:
The first thing people have to do to help the children bitten by poisonous snakes is to save their lives by removing poison from their bodies. The removal of kidsf pain and sufferings can wait. Naturally, the act of taking poison out should take precedence over teaching the children how to avoid being bitten by snakes. In this story, however, the highest priority is not given to saving human lives, but to other matters of less importance. Let me call this state of things “the reversal of priority” tentatively. What characterizes the provision of support with the reversal of priority is that both providers and recipients of support have lost sight of what is most needed.
The reversal of priority is, however, not limited to a fable. People involved in support provision and recipients in the real world often inadvertently allow this reversal to happen. I will describe this point in detail later.
Reversal of priority
The youth with developmental disorder I described at the outset can be luckier than I in the sense that he managed to receive, unlike me, some support as someone with the problem. Sadly, however, I did not envy him, the reason being that the order of priority for support was reversed.
For this young man, who was being bullied, the highest priority of support should have been to put an end to abuse and bullying. First and foremost, his safety should have been secured prior to training him to be able to come to terms with his surroundings. While I do not mean to deny the significance of SST and day care, I cannot give higher priority to such programs, no matter how useful they may be, than protecting and securing safety for those children currently subject to ongoing bullying and abuse.
Although it may have been true that his difficulty to deal with others due to his developmental disorder caused him to be bullied, bullying or abusing those people with severe disabilities must never be justified. When the priority of support is reversed, keeping the victims safe takes the back burner, and instead, utmost emphasis tends to be placed on healing their psychological scar and training them to be able to adapt themselves to society. Or, those people with disabilities themselves end up asking for such support.
Let me now talk about my own experience. As a grade school kid without any specific diagnosis, I went to a care and education institute once a month where my mother received some advice. At school, I received virtually no special consideration or education. When I was on the receiving end of bullying, my mother demanded that the school, which did not have a good understanding of developmental disorder and showed no readiness to deal with the problem, that it should intervene and stop any bullying and fights irrespective of their reason. If I have grown to be an adult comparable to those with AS who have received special education and support programs, it speaks volume about how much more important it is to secure safety rather than training. I would say I have been lucky to go through the education in which safety was secured to defend me from interpersonal trouble.
Referring back to the issue of the reversed priority, this reversal can often happen with regard to occupational support. The first thing that comes to the mind of those with AS when they hear of occupational support is vocational training. I know of those with AS who regularly go to community workshops. Attendance at such institutions does not, however, lead to employment due to lack of jobs that they are capable of performing. The support with reversed priority puts emphasis on vocational training, often resulting in inadequate employment security. In some community workshops, many people can have occupational experience, yet they fail to land jobs. Unfortunately, those people attending the workshops work much longer under far harsher conditions than us, yet they make far less money. If support is being provided with the primary objective of enabling people to earn cost of living, the ongoing training is also an example of reversed priority. Jobs are, after all, a means through which people can earn incomes. They do not work for the sake of having work experience.
When people are trained to deal with the world they live in, they should be trained after they have got the assurance that they can have an adequate standard of living in terms of security and income. I do not tolerate the type of training being provided that does not meet the prerequisite that people with autism can live humane lives.
Demand as a last resort
I expect some people will argue against the criticism of reversed priority, saying that my view does not represent bona-fide feelings of those with autism. They will add that other people often ask for the improvement of SST, which gives them opportunities to make friends.
I admit that there might be a great number of autistic people with similar demands. I fully recognize from my involvement with self-help groups of people with autism that they have strong demand for SST and vocational training. I would say that I have presented here these two types of support for your review just because there exist strong needs for support. I would also direct your attention once again to my proposal, which talks a lot about what people with autism do not mention very often or overlook.
Here is my answer to the counter argument that people with autism themselves want support. Think of the circumstances under which people with autism talk about the support they would like.
Let us talk about discrimination against African Americans, and assume that, in a country where discrimination and abuse against them persist, African American children ask their supporters to make them fair-skinned, or create classrooms exclusively for them, and help them acquire skills to make friends with white children. These demands are wrong. The first thing we have to do to deal with the existing discrimination against African Americans is to eliminate the discrimination. It is fraudulent to try to make the skin colors of those children fairer, or create classrooms for them, while leaving intact the circumstances in which they are treated unfairly. Let us call the type of demands stemming from African American children who live under discriminatory circumstances “demands as a last resort”. They do not have to make such demands if they live in discrimination-free society. It is true that the racial problem is different from the one faced by people with disability in that those with disability have handicap in real lives. Yet those two types of problems have some commonality in the sense that the disabled who live in society where disability causes them disadvantage often make such demands as a last resort.
I once received e-mail, which reads, “I am bullied at my workplace. I might be autistic. I would like to get some treatment at a medical institution. Could you recommend to me some good institution?” I have not had any chance to see the sender in person, and do not know if he is really autistic. Yet, his wish to see a doctor and have his disability treated is a “demand as a last resort”, and cannot be considered to be a wholesome one. Without bullying, he would not have made this demand.
When many people with autism ask for SST, efforts must be made not only to meet such demands, but to find out if steps are taken to enable those people to live as members of community as opposed to segregated from it. We also have to ensure that those people with disability wishing to take vocational training are not excluded from workplaces merely because of their disabilities.
There is no doubt that those “demands as a last resort” from people with autism are very serious and urgent ones. Yet, I object to regarding the demands of those people who have no other choices as “what they are really seeking for.” I personally do not regard any demands from people with autism as rational ones unless they are expressed by those people who have access to secure livelihood and who are free from abuse or bullying, no matter what circumstances they may be under. The “principle of night watchman support”, which I am just about to write about, intends not to meet those demands as a last resort, rather to save them any need to make “demands as a last resort”.
Some people might argue that, from what I have said so far, I am bound to refer to such issues like “securing livelihood” or “prevention of abuse and bullying”, which they might claim are nothing other than the “demands as a last resort”. They would argue the “principle of night watchman support” is one form of the “demands as a last resort.”
Their argument is absolutely correct. While I am sure that the principle does not have the reversal of priority, I have to admit that it represents the “demands as a last resort”. Hopefully, the objectives stemming from the principle should no longer need to be discussed, when they are completely met. Yet, I must say that the demands contained in the principle of night watchman support differentiate themselves from the other demands as a last resort, in that the former does not create the reversal of priority, or reproduce, on a larger scale, unnecessary demands of last resort.
Let me summarize the first part of my paper. It is vitally important for people with autism, like any other people with disabilities, to be able to secure livelihood and live free from any abuse or bullying. These two requirements should be given the highest priority among all kinds of support. Any support provided without due attention to these matters has the risk of causing the “reversal of priority” and the “demands as a last resort”, and of generating adverse results. I advocate the “principle of night watchman support”, to prevent such ills.
(2) What is “the principle of night watchman support”?
Principle
After a rather lengthy introduction, I would like to present the overview of “the principle of night watchman support”. I will begin by offering the clear-cut definition of the concept.
Top priority is given to securing safety and cost of living for people with autism who are in trouble.
The highest priority is given to ensuring that people with autism who are in a difficult situation can lead a financially decent life. I know that there are lots of people who ask for other types of support. Yet, such support can be purchased as support services easily so long as people with autism (or parents of autistic children) can earn enough to cover cost of living.
Materialistic solution to problems is the target
When clients cannot ensure that their needs are met or their safety is secured due to the difficulty stemming from their disability, priority is given to ensuring that the trouble is solved, followed by training designed to alleviate the difficulty. This order of priority must never be reversed.
Very conservative
Support is provided only when people with autism (or their supporters) are in crisis and cannot solve the problem they are facing on their own. A night watchman provides security only at the time of crisis, and remains inactive otherwise. Likewise, night watchman support is not needed when people with autism can manage their own affairs or live free from abuse and bullying.
Necessary evil: When people have freed themselves from financial and security crisis, this type of support is no longer needed. Just as the training wheels of a bicycle are to be removed, so is the night watchman support supposed to be removed.
Yet, those in trouble must be sure to be supported
We need to create a system similar to mutual assistance or insurance, which gives a helping hand to those who are in plight in society on a preferential basis. The plight people face in society has nothing to do with medical severity of the problem. It refers to the difficulty in terms of security and finance.
We must by all means eliminate the possibility that somebody cannot get support because he or she has no economic resources. We also have to keep in mind that many of people with autism who have not successfully found jobs have trouble obtaining support service on their own. Given this backdrop, I would like to mention what type of support is in demand.
What specific support is needed?
Financial support
If you ask for money instead of sympathy in the context of support provision, it might sound too cut-and-dried, too direct or too materialistic and off-putting. Yet, I would say that the most urgently needed support for those adults with autism who are out of work is financial assistance. Further, that support should be preferably given independently from the financial status of their families.
When discussing financial support, we often hear people saying that being supported by your family when you are jobless is one possible option, in the light of the economic circumstances of Japan, which may be in recession, yet not in dire straits. One weakness of financial support by families is that people with autism and their families could have conflicts of interest. I know of quite a few people provisionally diagnosed as autistic who are not getting very well along with their families. It is, for example, very difficult for an unemployed person with autism to ask his family for financial assistance. There can be two types of financial assistance to be provided. One is to create ample possible opportunities for employment for people with autism, even if they are part-time jobs, so that they can earn their wages. The other is to give those people allowance to cover cost of living, like livelihood assistance by government. While whatever means to secure incomes should be utilized when people have trouble earning money to cover cost of living, greater emphasis could be placed on the former option of enhanced employment opportunities, as the “principle of night watchman support” defines support provision as a necessary evil.
Support to prevent abuse and bullying
While the type of support advocated earlier is for adults, this type of support is more for autistic children. When adults are being bullied or abused, however, they also need this kind of support. It is imperative that immediate legal and physical protection is provided to those with autism when they are subject to any kind of bullying or abuse.
Service provision can be called successful when those with autism realize that they also have the right in the context of education to be protected when any harm is potentially done, and any harm to be afflicted upon them is unjustifiable, no matter what disabilities they might have.
In more specific terms, support can include the provision of shelter at the time of abuse or bullying, the availability of legal proceedings through relevant institutions when abuse or bullying has been spotted, and the provision of education that trains people to familiarize themselves with laws and systems to protect themselves when they face impending abuse or bullying.
Risk prevention is not a solution.
While I have so far mentioned virtually everything I have intended to, I am afraid that I might have ended causing some misunderstanding. That is, my emphasis on the right to exist for those with autism could have sounded as if I am advocating constant protection of them. I would use here the words “risk prevention” to make once again the point that the “principle of night watchman support” rejects by nature constant protection.
“Risk prevention” means keeping people with autism from every kind of risk, so that they will not be exposed to any risk. It includes raising them in as safe an environment as possible, and having them choose the safest and securest course of life. What I expect the “principle of night watchman support” to do is not the elimination of all possible risks, but just the reverse.
I do not know how to answer when those involved in support ask me a question like “You seem to have good prognosis. What education have you gone through?” It is true that I have received a relatively good education for my generation who had rather limited resources available. It does not, however, explain the whole story. I would say that my life has been enormously enriched by the unfamiliar and unexpected things that I have come into contact with. I would not have been able to change myself as much as I did, if my life had been very safe, harmonious, free from any anxiety, concern, or sufferings. People, including those with autism, learn more from the unexpected than what is given, and from sailing through the uncharted waters. We should not, therefore, deprive those with autism of chances to face and deal with risks, no matter how painful the experience may be. I would expect some people to argue against it, by saying “This is nothing more than a stop-gap measure. What we really need is a planned preventive education” If they mean that early education should be emphasized as much as possible for better upbringing of autistic children, they are correct and do not disagree with my view. If they mean, however, to deprive autistic people of experiences of facing risks, it is a different story. The problem of that approach is that protection narrows the scope of experience that they can have. Some people might recognize the reversed contradiction, that is, “Wonft the principle of night watchman support also deprive people of possibility of experiencing the unexpected?” I admit that the principle is not totally free from that potential. The current way of providing support, however, often forces people with autism to choose far safer and more secured course of life than when the “principle of night watchman support” is in place. For instance, people with autism may be discouraged from advancing to higher education, so that they will have less trouble finding employment. The problem here is not that they are unable to go on to good schools, but that they have no choice with regard to their courses of lives. If nothing is done to redress the current state of things, “risk prevention” will be further promoted, and experience that people with autism can have will be narrower. If they have the minimum safety and income secured for them at the time of trouble, they will be more likely to be able to face the unknown and the unexpected.
Let me reemphasize that the “principle of night watchman support” refers to the type of support that people will need only when they are at crisis and cannot find the way out on their own. I hope that the principle will help those with autism to lead a more chaotic life rather than a well-planned serene one.
(3) Conclusion
I have so far mentioned a lot about night watchman support. Yet, I believe that the conclusion that has bee drawn is rather simple. That is, “All types of support must be provided with the objective of enabling people with autism to live an adequate life in terms of security and finance, and not in any other way. That life must be secured for all the people with autism no matter what difficulties they may be facing. The “principle of night watchman support” speaks volumes about the issue linked to the right to life among the basic human rights.
I am afraid that the theme of this paper has not been discussed in connection with support to developmental disorder as often as it should. When I attend academic conferences or seminars on developmental disorder, I often come across such subjects as “how to educate children with developmental disorder”, “how to respond to problematic behavior”, and “how to adapt them to society”. I virtually never witness, however, a theme like “What is needed to ensure that people with autism can live like anybody else?” While participants talk extensively about care and education, they make very little reference to how minimum standard of living can be secured. The movement to support those with developmental disorder excluding intellectual disability in Japan has had a smooth faring free from any opposition, unlike the one against discrimination, and as a result, has not had to deal seriously with the issue of human rights. It seems that as a consequence, very little emphasis has been placed upon “the rights of people with disabilities”.
This probably has something to do with the incredibly limited awareness (or sensitivity to human rights) on the part of people with autism, which inhibits them from speaking out that they have the right to life, and that nobody is allowed to violate their human rights, whether they are disabled or not, and whether their disabilities are mild or severe.
When I attended a symposium whose objective was to get proposals from people with autism, I heard a grown-up with autism, who was bullied when young, saying that he would like to be non-disabled and to make friends with able-bodied people. That saddened me to the extent to feel as if he were a slave child who had been abused all the time. I do not take issue with his wanting to make friends with non-disabled people. What concerns me is his assumption that he has to try to be normal in order to make friends, and he is not angry about the painful treatment inflicted upon him.
Medically speaking, different people have autism of different severity, and the objective that I can attain can often be unattainable for others with autism. I would like, however, anybody with autism, irrespective of the severity of his or her disability, to have the feeling that he or she worth being protected unconditionally.” In this sense, the “principle of night watchman support” is not merely a proposal to those involved in support, but it can trigger the debate that can cause those people to change their mindset. I hope that the debate on this issue achieves its objectives and the debate itself will be nullified.
Note:
While remaining anonymous, I would like to take this opportunity to express my appreciation to the people with autism and other disabilities for their views and information that they have contributed through the ML, Internet sites, and off-line meetings with which I am affiliated. I also hope that I can reciprocate their contributions when I become able to make useful proposals to deal with all kinds of disabilities. I myself may be living in the world different from the one where many people with autism are living. Yet, I wish all of them, who are swimming in the uncharted waters, every success and good luck. |
|
1. 
