（スピーチ原文ママ）
Inclusion of Persons with Psychosocial Disabilities: With Special Reference to Cross-Disability Collaboration and Article 19 of the Convention.
Hyung Shik Kim
障害者権利委員会
Korea University of International Studies 名誉教授
New York State University Korea 主任教授
Introduction.
I would like to begin my presentation by welcoming participants representing IDA, Bapu Trust, APCD, CBM and a number of Asia-Pacific nations working with persons with psychosocial disabilities. I think it is most significant that that this working is organized by Korea’s KAMI on the theme of Inclusion of the persons with psychosocial disabilities. Significant, in the sense that ‘they are emerging from civil death ’ throughout the world’ (Quinn, 2013). Instead of being treated as ‘objects’ to be managed or cared for, they are gradually recognized as as autonomus ‘subjects’ on their own rights. Still, the situation of persons with psychosocial disabilities are still struugling to be recognised as autonomus human being in many parts of Asia-Pacific nations. In fact, no nation is immune from the deep-rooted sigma and prjudices in daily encounters with other people. To persons with disabilities in any given nation, the efforts to be included and participate in the life of a community have invariably meant a struggle for recognition. In my presentation, I plan to deal with how we should understand the concept of inclusion and explore some strategies for achieving inclusion. I will try to stress the strategic importance of cross-disability collaboration which I think critical in achieving inclusion, but has not been well explored to date.
Inclusion which has entered into disability narratives with promises comes to us since the adoption of the UN Convention on the Rights of Persons with Disabilities (hereinafter UNCRPD), but with challenges and confusion. The initial confusion arises from the clashes between integration, which incidentally has been so well established in disability services and education globally, and the new comer inclusion. As an illustration, special education scholars in Korea fail to or do not make any distinction between integration and inclusion in their recent writings1). The simple reason for this has to do with the fact that Korean language has not yet come up with a new vocabulary to accommodate the profound meanings which are contained in inclusion, which is not the same as integration. This appears to be the same in the case of Japanese language. I would suggest that the term inclusion is essentially reflects European thinking which had gained a global recognition with the ratification of the UN Convention. The UN's adoption of the UNCRPD with its emphasis upon inclusion added the significance to the development. This partly poses a challenge of its own to work through the concept as far as this region is concerned. At the time of UNCRPD negotiations at the UN, European DPOs were most vigorous in advocating the concept of inclusion with which they were already familiar, while it was almost an unknown term to the delegates from other parts of the world, including Asia-Pacific. For example, the 2nd European Conference of Ministers responsible for Inclusive Policies for People with Disabilities was held in May 2003 in Malaga, Spain. This Conference recommended the adoption of a Council of Europe Disability Action Plan. This might partly explain why some state parties are still struggling with the concept when they work on their national submission to the CRPD. Perhaps, Asia-Pacific nations would have to go through a similar process.
Even if we confined the present discussion to the context of the UNCRPD, the term inclusion is significant because it deals with 1 billion persons with disabilities who have been invariably excluded from the mainstream society. The immediate challenge is that global disability community must come up with, or achieve some consensus in the use of the term inclusion by making a clear distinction from integration. It should be made very clear from the outset that inclusion should be accepted as a framework for development of disability policies and services. UNCRPD has affirmed inclusion as a theoretical, moral, legal and political construct in restoring the relationship of persons with disabilities with the rest of dominant society. Yet, the remaining challenge is how the global community would go about asserting the construct to the dominant society that is still reluctant, ignorant or apathetic to the challenge of living with persons with disabilities. That is, practicing inclusion. This invites us to explore strategies for ‘Cross-disability Collaboration’ to ensure a definite place for inclusion in any given society. Even if one briefly looks back to the history of disability movements, the track record of ‘Cross-disability Collaboration’ does not appear to be a proud one. Still we can immediately cite the astounding achievement of global disability movement in successfully negotiating the UN Convention on Disability Rights. It is my expectation that we return home with this challenge from this workshop. I intend to deal with a little bit more about the theme briefly later on.
This workshop is not a place to deal with the theoretical status of inclusion2) as such but to explore the possibilities what this could offer to global disability movement. This implies that one can be more positive about the practical possibilities inclusion may offer than being defensive about it. Notwithstanding the importance of theory, one cannot overlook the broad political implications which are inherent in the process of exclusion and inclusion, social policy and human rights (Jackson 1999, (Silver 1994-6; De Haan n.d., 1998; Sen 2000; Kabeer n.d.; Peace 2001; Jackson 1999; Room 1999).
It should be noted that the spirits and principles which the term inclusion represent are critical in raising pertinent issues in politics, economics, culture, language, gender, religion, age, health and so on. This would have implications for persons with disabilities, too. Let us consider the following questions keeping in mind their implications for disability.
-Has inclusion established itself as a bona fide theory and method in academia?
-On what grounds one can say exclusion is undesirable and inclusion desirable?
-Is inclusion as a social norm, a utopian ideal or a realizable model?
-Who are excluded or included and from what and how? What are the processes?
and mechanisms of exclusion and inclusion? And what are the politics of these
terms (Jackson 1999)?
-Despite apparent theoretical and moral issues, could we still accept inclusion as a viable theoretical research? (Loury 1999; Jackson 1999)?
-How should we approach the problems of tensions and possibilities which are?
Inherent in inclusion? (Askonas & Stewart, 2000).
-Is inclusion premised upon progressive and interventional government for overall institutional reforms?
-How is inclusion linked to fair and just society project?
-Is inclusion feasible for implementation in this competitive and market dominated era of globalization? More, specifically, would there be a place for inclusion in a competitive society like Korean society? Etc.
Given time, I very much like to explore “the problems of tensions and possibilities which are inherent in inclusion” and “How inclusion is linked to fair and just society for persons with disabilities? It should be noted that morality, law and politics of social inclusion of persons with psychosocial disability directly intersect with the above questions. From a moral point of view, a person’s personhood or social being cannot be experienced in isolation from without sense of belonging and sharing. Here in this workshop, we are excited about the possibilities of independent living, participation and inclusion as active citizens in society. But at the same time, such an excitement is confronted with enormous tensions and indeed fears of not knowing how to live with persons with psychosocial disabilities. The stark reality is that persons with psychosocial disabilities are caught in-between two polarizing forces-the pole of possibilities for participation and inclusion and the pole of tensions that reject such possibilities. Here in this workshop, we are excited about the possibilities of independent living, participation and inclusion as active citizens in society. But at the same time, such an excitement is confronted with enormous tensions and indeed fears of not knowing how to live with persons with psychosocial disabilities.
Understanding Inclusion Matters.
Without going into a comprehensive literature review, it suffices to note that overall literature have not come up with any consensus on the definition (Cameroon, 2006). This is well evidenced as shown by Korea and other nations in the process of implementing the UNCRPD and this suggests that the issue of inclusion cannot be explained and resolved.
The Korean 통합 is used to denote inclusion but it actually means integration as it has not caught up with inventing a new vocabulary for inclusion. The term integration sees persons with disabilities as someone with problems in need of treatment, dependent, passive and hence should receive socio-medical rehabilitation services so that they could become self-reliant like persons without disabilities. This expectation becomes a burden and imposes a role akin to Parsonian sick role ( Millon, 1999). Persons with disabilities were invariably labeled and excluded. The attempt to cure and rehabilitate them for their adjustment to society resulted in devising special services which in turn further reinforced their separateness, that is, exclusion. The key purposes of disability services were to enable or force them to assimilate, integrate or adjust to the mainstream society. By amplifying the differences associated with disabilities, it served to reinforce the separateness and negativity. Accordingly, any endeavor for assimilation should be the responsibilities of persons with disabilities and their families, which underpins the fact that the persons with disabilities' relationship with the community is that of power and inequality since they do not have power to reject such an imposition. After going through the arduous process for assimilation, persons with disabilities may be recognized and supported by others in being integrated into the society. In this sense, the meaning of integration of the past should be understood at best as an assimilated integration (同化的 統合). In this approach, the target for change has always been an individual with disability, and never the dominant who had power to define and marginalize persons with disabilities (Kim, 2012). Article 1 of the UNCRPD advocates the implementation of the human rights model of disability to replace the traditional medical definition of disability that used to stress assimilated integration. State parties are expected to reform existing legislations, policies and services in accordance with this principle. Korean Government's current guidelines for disability services are not fully reflecting the human rights model of disability. To the extent that legislations and policies are to be reviewed by adopting the principle of inclusion, it simultaneously points to possibilities and tension (Askonas & Stewart, 2000). From a rather limited overview of the concept of inclusion, one can note that it is used in a variety of ways, although it has not reached any consensus as yet, as illustrated in the case of Korean and Japanese, how the concept of inclusion might be used. However, Chinese apparently has two separate vocabularies to denote Inclusion: 融合, and 整合 for Integration to emphasize that persons with disabilities themselves have to make efforts to be integrated into the society. It may not be too farfetched to suggest, notwithstanding the UNCRPD's stance on inclusion, that in reality 'inclusion could be understood as a simultaneous concept' in the sense that it cannot be a fixed concept which can be achieved in one resolve, but a dynamic, continuous, slow-moving and constructed concept. This position of the author's has often been vindicated during a number of debates within the CRPD Committee or other Committees such as the Convention on the Rights of Child.
The notion of inclusion as simultaneous concept' is a useful one which may tie well with the CRPD’s notion of progress realization of the Convention. It may allow some nations to gradually deploy strategies to achieve inclusion. In reality this is what is happening in the process of law reforms or deepening public awareness of disability or implementing changes from special education to inclusive education.
Inclusion is critical since it aims to transform the social status of persons with disabilities, as shown below:
Accordingly, one can arrive at the following tentative concluding observations:
a. Inclusion a positive value to pursue when it is compared with other values such as exclusion or, alienation.
<Table-1> Changed Status of Persons with Disabilities
|
From Protected Status Passive Citizenship Exclusion Powerlessness Denied Rights |
➡ |
To Participatory Status Active Citizenship Inclusion Empowerment Exerting Rights |
b. Inclusion is a multidimensional and simultaneously moving concept and as such defies monolithic approach. There are domains of economic, political, and social exclusion as well as power relationships, culture and social identities which are found in multidimensional and simultaneous contexts.
c. Inclusion may indicate a particular situational context, but it could also imply a process whereby an individual is excluded through certain institutions. Here the focus is on the institutions that explains the process of exclusion. Institutional exclusion and abuse of human rights may be approached from the perspective of inclusion.
This paper suggests that further research on the theory and practice of inclusion is needed to ensure that it would play a key role as a basis for legislative and policy developments. A similar point can also be directed to disability organizations who can adopt inclusion as a framework to guide their advocacy or consultative activities. Inclusion is embarking upon as journey as a framework for practice. It should enable persons with disabilities to access important public goods and services that would offer fair opportunities, especially in the area of education, employment, accessibility, legal capacity, culture and so forth and as well as satisfaction of human needs that guarantees a decent standard of living. This has implications for action with the relevant authorities, such as Parliament, cross-cutting ministries and Local and Regional, municipal governments in influencing them to draw up inclusive policies.
This presentation would have done its job if I was able to convince the participants that the true significance of inclusion lies in the fact that it, in a small way, would be directly instrumental in implementing the UNCRPD. In a broader sense one hopes that it would steer global disability community to become more sensitive to making a humazing society rather than being driven by materialistic pursuits.
Some Practical Challenges Confronting Independent Living in Community
1. Article 19 as a Catalyst to trigger Other Cross-Cutting Articles
Any discussion on article 19 must begin by recognizing the inter-dependent aspects of the article with other articles as have already been well spelt out in the ‘Thematic study on the right of persons with disabilities to live independently and be included in the community’(Human Rights Council Twenty-eighth Session. Agenda items 2 and 3). I also duly acknowledge the earlier submissions on the theme by State parties, NHRIs, NGOs and Inter-Governmental Organizations, and also two consultative workshops held in Brussels by UNCRPD and International Inclusion in June 2012. The joint workshop of the UNCRPD and Inclusion International in particular highlighted the barriers facing economically less affluent countries in implementing the article 19.
I intend to contribute to this Panel by drawing upon experiences gained from working in Korea and to a less extent in the context of Asia-Pacific region in which I had participated as a consultant/NGO worker over the years. The observations may reflect particular experiences of the region, yet they can be generalized to highlight challenges confronting many developing nations. 1 billion persons with disabilities in developing countries would face barriers different from those experienced in advanced countries to lead an independent living by implementing the article 19.
Institutions flourished as a part of combined legacy from the charitable care of the persons with disabilities and the days of extreme poverty since the Korean War in 1950 while they serving the purpose of segregating and indeed keeping the persons with disabilities apart from the society. Viewed in this way, independent living as enshrined in Article 19 of the Convention tantamount to deconstructing the heritage of caring, protective and charitable institutional paradigm, but in many parts of the world the paradigm still persists with very little hint of change for socio-political and economic reasons.
Independent living is all about respecting decisions of persons with disabilities to return to natural environments with as few restrictions as possible. We are informed that independent living is not just about living alone independent of other persons; it is about living in the community with other people. It is having the autonomy and independence to make decisions and having a control over the choices and shape one’s life. If support is needed to live in the community, they should be provided.
For Korea, implementing independent living meant waging a number of active, sometimes violent campaigns on the part of persons with disabilities to force the Government to come up with reforms. The initiative began with persons with disabilities themselves. It began challenging institutions as unequal and isolated living places in which human rights and sexual abuses and violence were part of daily living. The campaigns demanded the rights to mobility, services for personal assistance, to redeem the right to make one’s decisions, questioning programs and financial management of institutions, and urged government to shift policies from supporting institutional care to independent living and so forth. The Korean campaign joined forces with Japanese movements and started engaging other movements in the Asia-Pacific.
Implementing Independent Living in Action: An initial impetus for independent living arose from a study on a few samples of institutions which were carried out as a part of process to investigate alleged human rights, sexual abuses and violence.
<An Example of Good Practice: A Flow Chart as Critical Paths to Independent Living, as developed by a grass-root worker in Korea. >
Source: “Free Persons with Disabilities from Forced institutionalization!” A collection of public discussion paper. March 7, 2014. in Seoul
The Metropolitan City Government of Seoul with a population of 12 million citizens adopted a five-year independent living plan as a result of this study.
The study indicated that more than 50% of residents wanted life outside institutions and 70% were willing to have a go if certain conditions were met such as: a dwelling, a job that will ensure a decent living, access to personal assistance, friends, family life, able to make choices as to what to do or where to go, what to buy and eat things that have been denied in institutional living.
The Plan envisaged that it would deinstitutionalize 600 persons out of 3,038 (that is, 20%) from 2013-2017. The following are the summary of lessons from the project.
Implications for Article 19. The aforementioned Flow-Chart more than amply point to the fact that each critical path to independent living demands that other thematic articles of the CRPD to be horizontally integrated through incorporation of CRPD standards in to law, policy and programs. The Flow-Chart begins with Article 12 to make a personal decision about independent living, where and how to live, followed by Articles 5, 8, 9,14, 20, 22, 23, 27, 28, and 28 respectively. The importance of Article 32 International Cooperation should be highlighted as it is often neglected. International Cooperation as undertaken by NGOs and overseas aid in the past invariably meant working for the disabled in many developing countries by building institutions to care for and protect them by meeting the basic needs for subsistence, often becoming a permanent feature thwarting independent living. International cooperation should be geared to building capacity for independent living through exchange and sharing of information, experiences, training programs and best practices, including facilitation of access to accessible and assistive technologies.
Lessons from Implementing the Seoul City Plan
1. Failure to earmark sufficient budget to ensure transition of 600 persons with disabilities from institutions to community living;
2. Implementation of the project without due considerations for a variety of dwelling types to accommodate different needs of different types of disabilities, including home share and shared lives.
3. Forced to reliance upon unprepared and unsympathetic private rental markets for accommodation posed serious problems.
4. No guarantees for employment, strictly means-tested disability pensions and financial problems undermined the chances for an independent living.
5. Only quantitative change/evaluation is stressed at the expense of quality.
6. No guarantees for personal assistance services required for independent living...
7. Added challenges encountered by persons with intellectual/psychosocial disabilities.
8. Lack of trained personnel to support and monitor independent living, preferably personnel with Case Management skills, for example.
9. A need for mid to long term planning for post-support period;
10. Installation of mechanisms was needed to discourage persons with
disabilities queuing up for admission to institution, mainly due to poverty
;
11. On-going public awareness program on Independent Living.
12. Legal actions were needed to sue relevant local authorities to accept financial obligations for independent living.
13. The challenge of advocating Independent Living in the era of declining, sociologically, community spirit/Gemeinschaft., etc.
Source: Source: “Free Persons with Disabilities from Forced institutionalization!” A collection of public discussion paper. March 7, 2014. in Seoul
Cross-disability Collaboration for an Inclusive Global Community.
The foregoing discussion in a sense had foreshadowed that Cross-disability Collaboration can be organized with a clear focus on inclusion for the reasons summed up above under A, B and C. It would be useful to elaborate a little bit more on strategies for cross-disability strategies.
Strategies for Cross-disability Collaboration
The author aims to illustrate by presenting two set of drawings during the address. Put them simply, one can visualize numerous disability organizations coming together representing interest and concerns of respective disability-specific organizations. The other is organizations of persons with disabilities in different nations come together as a coalition of global forces. The different, but inter-linked process as a global movement has yet to learn to work together in dealing with differences and conflicts. Nevertheless, the CRPD is with us to enable us to reach this goal. The following material is presented for further discussion to facilitate Cross-national and cross-disability collaboration.
A. uman Rights Model of Disability for Inclusion.
One should also bear in mind the human rights dimension of inclusion since it is really all about each of us living together with dignity, and we are long way from achieving this as we know from disability rights. Human rights movement, like inclusion, is about people, including persons with disabilities, standing up to injustice, discrimination and prejudices and showing solidarity in the face of oppression. The human rights model of disability as incorporated in the UNCRPD must be seen as an ideal to remove the past practices of prejudice, discrimination, separation, overprotection and exclusion to ensure full participation of persons with disabilities and their families in society. It might be useful to reflect upon what principles the CRPD underline to ensure the inclusion of persons with disabilities at this point in the discussion, they are:
▻clarifies human rights principles in the context of persons with disabilities;
▻provides an authoritative model of disability for governments to use in developing national law and policies;
▻create effective mechanisms for monitoring the rights of persons with disabilities;
▻establishes international standards regarding the rights and freedom of persons with disabilities;
▻establishes common bases for greater participation, inclusion and self-sufficiency of persons with disabilities worldwide;
▻provides bases for consultation with persons with disabilities and their representative organizations.
The human rights model of disability endorses the right to be different and the right to be the same without necessarily sharpening distinguishing characteristics in recognizing citizenship status of persons with disabilities with accompanying legal, political and social rights (Kim, 1998, 2003, 2008, 2012). If we can concur with the idea of citizenship status of persons with disabilities in defining inclusion, the underlying principle has to be equality. This is an expression of statement on the part of this writer that the inherent value of inclusion should be upheld. Unlike in the process of assimilated integration, inclusion is understood in the context of equality between persons with and without disabilities and both persons with disabilities and mainstream society accept mutual differences and characteristics. The table below <Table-1> changed status of persons with disabilities from exclusion to a citizenship through inclusion.
Effective Advocacy
By definition advocacy means to assist persons with disabilities/DPO to understand their rights and responsibilities so that they can better participate/support in their communities.
² Individual Advocacy/Consultancy
Individual Advocacy is about an advocate:
- Speaking up on your behalf (the advocate can put forward what you want to say - via a telephone call, letter or a meeting).
- Making sure that your rights are respected (the advocate can assist you in making a complaint).
- Talking over your problem (the advocate can assist you to think through the options that are available to you).
- Providing you with information and making referrals to appropriate services (the advocate can link you with other relevant services).
a. Self Advocacy is about an advocate supporting a person with disability to
- Speak up for one self.
- Explain one’s needs personally.
- Stand up for one’s rights.
- Know one’s responsibilities.
- Take control of one’s life.
- Make decisions for one self.
b. Community Education tools include workshops, presentations, information leaflets, publication of a newsletter, and participation at relevant peak bodies/committees. Just one example in educating the community is the programme called 'Disability Awareness' to educate people in the community so that they are better able to meet the needs of, act, interact and react appropriately to, with knowledge and confidence, people with disabilities the same as everyone else in the community.
c. Consumer Training
Consumer Training tools include the presentation of topical workshops that aim to teach service users how to advocate or speak up for themselves in an assertive manner, so that the best outcomes can be achieved. service users receive individual training as part of their case management plan and also via presentations to support groups and services.
d. Support, referral & information
Support, referral & information is provided by DAN to service users, the community, support and interested groups, as well as other disability, health and welfare services.
Consultancy
Attributes of a Good Consultancy
-Ability to listen and observe
-Good writing, analytical and problem solving skills
-Ability to see things from different perspectives
-Ability to employ a variety of research tools and techniques
-Ability to deal with different cultural contexts and relationships
-Ability to develop measures/strategies for action
-Adaptation to the specific context of each piece of work
-Flexibility to manage changing schedules and situations
-Honesty about what is not feasible, and what may not be deliverable
-Timely action and reporting
-A willingness to check and discuss any required changes
-Empathy with the consumers and organizations
e. System Advocacy.
Presentation of position papers or making submission on a selected themes or issue areas. Alternatively, develop a Systematic Advocacy Services as illustrated from examples of advocacy services from Queensland, Australia (https:www.dss.gov.au/our-responsibilities/disability-and-carers/for-people-with-disabilit/external-merit-review/support-com/ (Accessed on13 October, 2015)
Human Rights Legal Service (HRLS) - The HRLS provides specialist legal advice, referral and representation for vulnerable persons with disability in Queensland. The HRLS gives priority to assisting persons with impaired capacity who are subject to restrictive practices and involuntary treatment in Queensland.
Mental Health Legal Service (MHLS) - The MHLS is a specialist legal service dedicated to providing free legal assistance in relation to mental health law in Queensland.
Justice Support Program (JSP) - The JSP is a QAI initiative to support people with disability to remain in the community and prevent any further entrenchment into the criminal justice system
Conclusion: Cross-National and Cross-disability Collaboration for Inclusion
This paper has made an endeavor to explore how we might engage scattered global disability communities for an effective Cross-disability Collaboration. The approach centered on the notion of inclusion with all the implications it encompasses in the context of the CRPD implementation cross nationally. The argument was that further utilization of inclusion as strategy would play a critical role as a basis for legislative and policy developments. In the same way, global disability organizations can collaborate to ensure that inclusion would guide their consulting, advocacy and socio-political activities. In more practical terms, Inclusion should enable people with disabilities to access important public goods and services that would offer fair opportunities in education, employment, accessibility, legal capacity and further ensures meeting human needs that would be the prime condition for realizing their human rights. Along with the concept of inclusion, this paper has made a legitimate assertion that people with disabilities are citizens like any other people and that authorities must ensure, at all levels, their access to political and public life, education, training and decent employment, health care, social welfare, access to information, culture and leisure. This has implications for action in that relevant authorities, such as Parliament, cross-cutting ministries and Local and Regional authorities will have to work towards drawing up policy recommendations promoting citizenship and social inclusion of persons with disabilities to Government.
This paper will have done its job if it was able to convince that the true significance of inclusion lies in the fact that it, in a small way, would be directly instrumental in implementing the UNCRPD. In a broad sense one hopes that it would steer global disability community to take further steps to advancing towards humanzing society rather than being driven by materialistic pursuits.