Volume 9 Issue 10 - August 01, 2012
“Inclusive education is the best way to remove attitudinal barriers”: Klaus LachwitzThe voices of people with intellectual disabilities have always been marginalised, even within the disability movement. Historically, parents of people with intellectual disabilities and their associations have led this sector. But, with the advent of the Convention on the Rights of Persons with Disabilities (C.R.P.D.), the paradigm is changing. Klaus Lachwitz, President of Inclusion International, the global federation of family-based organisations with about 200 members in 115 countries, talks to Dorodi Sharma of D.N.I.S. and clears the air on their position on legal capacity, inclusive education and the apparent lack of self-advocates in the movement.
D.N.I.S.: How has the Convention on the Rights of Persons with Disabilities (C.R.P.D.) changed the lives of people with intellectual disabilities?
Klaus Lachwitz: It is difficult to give a general answer. Countries that have ratified C.R.P.D. react very differently to the challenges of implementation. In some parts of the world, C.R.P.D. already is an important framework for the change of laws, policies and attitudes, but in other parts of our world C.R.P.D. is not having any impact on the neglect and discrimination against persons with intellectual disabilities.
States Parties which have ratified C.R.P.D. are obliged to implement it. This obligation sometimes results in concrete actions and amendments of existing national laws for the benefit of persons with intellectual disabilities. For example, closure of big institutions where persons with intellectual disabilities were incarcerated and confronted with segregated living conditions.
D.N.I.S.: A few of the Articles of C.R.P.D., particularly Article 12 and 24 have been a difficult area for most parents and families of people with intellectual disabilities. What are Inclusion International’s views on the debates and discussions going on around Article 12 and 24?
Klaus Lachwitz: Parents and self-advocates have told us that these are two priority Articles for them. The difficulty for them is the lack of support available in the community and a lack of legal and policy framework to secure full legal capacity, including the provision of supported decision making under Article 12, and, to deliver quality inclusive education under Article 24.
For Inclusion International, it was clear from the beginning that equality before the law is a basic requirement for persons with intellectual disabilities to be included in and protected by C.R.P.D. Currently, persons with intellectual disabilities are, in many parts of the world, placed under guardianship, i.e. they are not allowed to make their own choices and to take their own decisions. Instead, guardians, i.e. third parties, are appointed by courts or other judicial or administrative bodies to make substituted decisions and to legally represent persons with intellectual disabilities. As a result, people are deprived of fundamental human rights such as the freedom of expression and opinion (Article 21 of C.R.P.D.) and the right to participate in political and public life (Article 29 of C.R.P.D.). And what is more, they are deprived of their right to decide where and with whom they want to live (Article 19 of C.R.P.D.) and, therefore, in some countries they find themselves placed in huge institutions managed by directors who have been appointed as their guardians. It goes without saying that such developments are not in line with C.R.P.D.
In many ways, guardianship laws originally were seen as a way of protecting persons with intellectual disabilities. Parents and professionals often feared that a person with an intellectual disability would be taken advantage of – made to sign contracts or give away money. Inclusion International believes that protection should not be developed at the cost of the status of persons with intellectual disabilities as full citizens of their countries by excluding them from their “individual autonomy including the freedom to make one`s own choices” as described in Article 3 (a) of C.R.P.D. (General Principles).
What is needed is to support persons with intellectual disabilities in exercising their legal capacity and to build up networks of individual support, which replace guardianship laws, measures and practices that deprive a person of legal capacity.
Article 24 of C.R.P.D. is of utmost importance for persons with intellectual disabilities. In many parts of the world, children with intellectual disabilities do not receive any kind of education; a few are educated and trained in special schools meant for persons with intellectual disabilities only. Inclusion International believes that the only way to ensure that all the children with intellectual disabilities, who are now excluded from school, get an education is for the regular education to take responsibility and educate all children. Inclusive education in a ‘school for all’ helps to avoid segregating children with intellectual disabilities from others of the same age and is the best way to remove attitudinal barriers between children. School systems that provide supports to include all children – by training teachers, adapting teaching methods and curricula - can provide a quality education for everyone.
D.N.I.S.: Does Inclusion International support full legal capacity?
Klaus Lachwitz: Inclusion International from the beginning of C.R.P.D. negotiations fought for Article 12 (Equal recognition before law). Inclusion International’s membership adopted a position in June 2010 supporting the right of every person with an intellectual disability to have their right to make decisions recognised and to receive the support they require in making those decisions.
The paradigm shift from substituted decision making to supported decision making as described in Article 12 of C.R.P.D., therefore, is fundamental to the Convention on the Rights of Persons with Disabilities. It guarantees that all persons with disabilities fully enjoy their human rights on an equal basis with others.
This is not just a question of legislative reform. It requires a transformation of societal relationships and an investment in support systems to enable people to exercise their legal capacity. There is a danger that Article 12 may be over simplified by Governments and that legislative reform by itself will be seen as the ‘magic bullet’. Inclusion International is working with its member organisations to develop models of support to enable people to move from substituted decision making to supported decision making. This means working with Governments and communities to enable the shift to be realised.
D.N.I.S.: In India, a common demand among parents and families has been that before transitional mechanisms are put in place, one should not attempt to move from guardianship to full legal capacity. Others feel that mechanisms will come into place once we agree to full legal capacity. It is a chicken and egg kind of a situation. What would be Inclusion’s advice or view on this?
Klaus Lachwitz: Even though many States Parties have ratified C.R.P.D. without reservation, no country in the world can claim to have implemented the paradigm shift from substituted decision making to supported decision making as described in Article 12.
One of the main obstacles to meet the criteria of Article 12 is the lack of experience with models of legal support as described in Section 3 of Article 12. We need to develop and to build up support models and networks which replace the traditional concepts of guardianship. This will take time. It is, therefore, understandable that parents and families in India are cautious to give up guardianship before supported decision making models and networks have been developed and established. While legislative reform which eliminates substituted decision making is an important part of the change process, there is a serious risk that Governments will change the legislation but that people will continue to have decisions made for them by default because there are no supports in place.
All of our members are developing their own strategies on how to best eliminate guardianship and replace it with a system of supported decision-making. Inclusion International`s official member in India is P.A.R.I.V.A.A.R., a federation of 150 parents’ associations and N.G.O.s working in 27 States of India at urban, semi – urban and rural level. We are in regular contact with our member which is adapting its policies to the requirements of C.R.P.D. and is actively involved in the implementation process of C.R.P.D. in India.
D.N.I.S.: What are Inclusion’s views on special education?
Klaus Lachwitz: Article 24 requires that States “shall ensure an inclusive education system at all levels.” We worked hard during the C.R.P.D. negotiations so that Article 24 does not refer to special education because we did not want to perpetuate the old paradigm of two separate systems – regular and special education. There still needs to be a mechanism for providing the individual support, accommodations and accessibility. The same Ministry should have responsibility for students with and without disabilities and for coordinating services from other Ministries (for example: pre-school, primary, secondary, post-secondary).
The disadvantage of special schools and of special education, however, lies in the tendency of many societies to separate children with intellectual disabilities from other children not only at school, but by prolonging such separation by referring them to special (sheltered) workshops when they have finished their school education. It is time to change this and to enable persons with intellectual disabilities to be included in the society by providing inclusive education and the “opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities” (Article 27.1 of C.R.P.D.).
D.N.I.S.: In India, special schools are few and are non-existent in most small towns and cities. There are no standards or regulations for special education and it comes under the Social Justice Ministry rather than Human Resource Development Ministry, which is the parent ministry for education. In such a scenario where there are no special schools and regular schools are unequipped to handle children with disabilities, the fate of the child is more or less sealed, i.e., to stay at home. In a country like India, if there is a stark distinction between special and regular schooling and the child falls through the gaps, do you feel an opposition towards special schools is justified?
Klaus Lachwitz: India is not the only country which lacks proper school education for children with intellectual disabilities, either because special schools do not exist or regular schools are not prepared and equipped to educate children with intellectual disabilities. In such a situation, a political paradigm shift is necessary and essential to avoid millions of children and adults with intellectual disabilities from still remaining uneducated and all the burdens caused by this discriminatory attitude and omissions of Governments, Ministries and public bodies from resting on the shoulders of the families, usually the mothers.
Inclusive education is a human right. C.R.P.D. requires States Parties to establish an inclusive general education system and ensure that students with disabilities are able to “receive the support required, within the general education system, to facilitate their effective education” (Article 24.2(d)). The first step is to make one Ministry responsible for educating all children. It’s a challenge and a task which should be tackled as early as possible!
D.N.I.S.: What are your views on Independent Living? Do you feel the concept has been grossly misconstrued and more and more ‘homes’ have been set up in the name of I.L.?
Klaus Lachwitz: Article 19 of C.R.P.D. contains a very clear message: All persons with disabilities should be enabled to live and be included in the community. This right is not subject to proving one’s ‘ability’, ‘eligibility’ or ‘entitlement’.
For Inclusion International, Article 19 consists of three parts:
- That a person can choose where and with whom they live.
- That individuals and families have the support which they need to live in the community.
- That communities (education systems, health systems, recreation, transportation, etc.) organise themselves in inclusive ways.
While C.R.P.D. does not prohibit group homes for persons with disabilities, it does require that no person with disability is obliged to live in a ‘particular living arrangement’. Persons with intellectual disabilities are entitled to choose their place of residence and the people with whom they want to live. For some, this may mean living alone or with friends; for others this may mean living with family. Choice is about having true options. Living with family is consistent with Article 19, if this way of family life is based on a voluntary decision of the disabled person and the family. In many cases the “decision”, however, is an involuntary one caused by poverty, lack of alternatives, lack of personal assistance and lack of community services and facilities which are responsive to the needs of persons with intellectual disabilities (Article 19(c)).
Article 19 also requires that persons with disabilities have access to the support they need to live in the community and that the support is provided in ways to prevent persons with disabilities from “isolation or segregation from the community”. If such alternatives are not provided by States Parties which have ratified C.R.P.D., the right to make choices and to live independently as described in Article 19 will be a theoretical right only.
These reflections show that Article 19 describes a very complex set of human rights. Inclusion International, therefore, has collected many examples, stories, court cases, legislative attempts to implement Article 19 from many countries and will publish a Global Report on Article 19 of C.R.P.D on the occasion of its Congress, ‘Achieving Inclusion across the Globe’ organised with its member ‘The Arc’, U.S.A.. This Congress will be held in Washington D.C. from October 25 – 28, 2012. It would be great if persons with intellectual disabilities and families from India could take part in that Congress!
D.N.I.S.: In our work in India, we have not seen many self advocates come out from the intellectual disability sector. How do you think we can ensure that more and more self advocates come out and become part of mainstream disability movement?
Klaus Lachwitz: Our member in India is working to develop a strong self-advocacy voice in India. Around the world, the self – advocacy movement is growing and there are a lot of good examples in all the regions of the world that show that persons with intellectual disabilities can be empowered to speak up for themselves, to present their own ideas and to actively take part in decision – making processes of D.P.O.s.
The council of Inclusion international, for instance, includes five self – advocates from five regions. They have the same rights as all other council members and they are assisted by persons of their own choice. Self advocacy works and needs support to be developed further.
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