A long and tiring day in class

It seems that the lay out of my weblog www.punkertje.waarbenjij.nu has been changed over this night. Soon there will be options to customize my settings again, but until then: Sorry for the lack of overview on this weblog.

It was a long day today, and after such a full week it was quite hard to take more information in, and to participate in discussions. Everybody was obviously very tired. But still it was quite an interesting day. I enjoyed.

Today, Monday morning, class started at 9 am again. The first session was done by Oliver Lewis, about Legal Capacity-Developments.
First we talked about the case of Stanev vs. Bulgaria again. In 2002 Stanev was diagnosed with schizophrenia and taken by an ambulance to a very poor social care home 400 kilometres away from his home. His appointed guardian (of the State) had authorized this, without even meeting Stanev. Stanev also wasn’t even notified of being placed under guardianship. After he found out, he tried to appeal against the guardianship and the institutionalization, stating that this was unlawful deprivation of liberty. He also tried to challenge the extremely poor living conditions in the social care home as inhumane and degrading ill-treatment. Stanev made his way to the European Court of Human Rights (2006), and he was the first person standing there from a social care home. The European Court found that the European Convention on Human Rights had been violated on 2 main points: 1. Detention in a social care home is detention, which was unlawful, and 2. the conditions in the social care home can amount to degrading treatment. The issue of legal capacity (regarding guardianship) was not addressed. Stanev is now released from the institution, and has an alternative. But unfortunately, although the State of Bulgaria had promised in 2008 to close this institution, this has not happened, and there are still other persons detained there.

The CRPD mentions a paradigm shift from seeing persons with disabilities as objects of charity, pity, fear, dependency, management and treatment, to subjects and holders of rights on an equal basis with others.

Then we zoomed in on Decision Making and the historical development of Legal Capacity, which is marked by 3 different approaches:
1. Status-based approach, meaning you have a disability or diagnosis, which automatically deprives you of any capacity to act.
2. Outcome-based approach, meaning deprivation of capacity is based on “how reasonable your decisions are”, generally based on “the insight that medical treatment is needed”; if you accept treatment that is valid, and the you are considered as capable to act, but if you refuse or do not consent, this is called “madness” (which is almost like a medieval witch-test). In fact, within this approach, the person has no choice at all.
3. Functional approach, meaning a medical test to assess functions on decision-making: Can you understand the world, can you appreciate consequences and outcomes of choices, can you act voluntary and autonomous (not pushed), and can you communicate decisions? (based in the theory of rationality according to Weber, which suggests that mental illness is irrational, and other persons without mental problems are more rational).
The CRPD is a relief for human rights, because it is no longer just rationality that matters.

Art 12 of the CRPD is about Equality before the law. Article 12.2. says that States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. Which means no guardian can take that away. (art 3.a explains that further by the general principles: Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons)

Article 12.3 says States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. This means that there need to be access to support for supported decision making, which is not substitute- or surrogate decision-making. The measures are obliged.
Art 12.2 and 12.3 are the shield and the sword on legal capacity.
The Concluding Observations of the CRPD Committee on Spain mentions (34.) The Committee recommends that the State party review the laws allowing for guardianship and trusteeship, and take action to develop laws and policies to replace regimes of substitute decision-making by supported decision-making, which respects the person's autonomy, will and preferences. It further recommends that training be provided on this issue for all relevant public officials and other stakeholders.
For many governments it is hard to understand how supported decision making should be organized.

Oliver explained some theories on Decision Making, such as the Pyramid on decision making (Michael Bach):
/\ representational decision making (such as a will or advance directives)
/ \ supported decision making
/ \ independent decision making (generally common decision making)

For supported decision making it is needed to recognize the legal capacity of the person and that there is a status of trust to other persons to assist. Important principles are: the right to self-determination irrespectable of disability, a legal presumption that persons have capacity and identity, and that there is decision making support to exercise that capacity and to reveal that identity, that all have a will and preferences, that decision making is interdependent, that persons are entitled to support to participate in equality.

Supported decision making is about meaningful relations, which is definitely not the same as guardianship.
Oliver mentioned that relations of trust can be found in lays around the person, in the circles of persons who you love, like, know or who are paid to support you (UK circles network for life planning).
I mentioned that Family Group Conferencing was a way of organizing supported decision making. Oliver agreed and mentioned that also the Swedish office of Ombudsperson has good results in building up trust.
It is assumed that persons with mental or intellectual disabilities are vulnerable to abuse in their own network, or need to be protected from their own decisions (which others think are bad for them). But we all know that guardianship is also a very big source of abuse (which is a violation of CRPD art. 16 Freedom from exploitation, violence and abuse).
Supported decision making cannot be imposed, it has to be voluntary, with relations of trust. Legal capacity stretches out over all areas of life (see art 12.2).

Then Anna Lawson gave a lecture on Discrimination.
She told us how (non)discrimination in international human rights was a developing concept, not static.
From the 50s till the 70s there was a concept of universal sameness. In the 70s, 80s and 90s specific differences were recognized. And from the 90s and onwards, there is a concept of multidimensional, structural disadvantages. (source: Arnadottir 2009)
Before the CRPD there were other human rights treaties that addressed (non)discrimination.
* The Universal Declaration on Human Rights (UDHR, 1948) Art1. All human beings are born free and equal in dignity and rights. Art 2. Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.
* In 1996 ICESCR – art 2.2 , and ICCPR art 2.1, and 26.
* In the 90s the Convention on the Rights of the Child (CRC) mentions discrimination based on disability for the first time in art 2.1. States Parties shall respect and ensure the rights set forth in the present Convention to each child within their jurisdiction without discrimination of any kind, irrespective of the child's or his or her parent's or legal guardian's race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status.

The CRPD mentions disability in art. 1 (Purpose), art 4.1 (general obligations) and art 5.2 (equality and non-discrimination). These articles apply throughout all articles of the convention.
Par 4.1.b mentions the obligation (b) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities; and (e) To take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise. Which mean sit is not only obligatory for the private sector, but also for States.

Art 2 of the CRPD gives the definition of discrimination, which mentions disadvantages, distinctions and exclusion, with the purpose or effect (not necessarily intentional) of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.

Reasonable accommodation moves away from universal sameness, and goes further that the Special Measures, which can be applied to end discrimination for a certain group (such as in CEDAW, UN Standard Rules and General Comment nr 5 of ICESCR). The concept of reasonable accommodation recognizes differences and diversity of people, where different persons need different treatments, in order to achieve equality.

Types of discrimination that are commonly recognized are Direct and Indirect Discrimination. Direct discrimination is a deliberate less favourable treatment, while indirect discrimination is imposing an disproportional disadvantage by seemingly neutral laws and practices.
For challenging discrimination a comparison is needed to show that a group is disadvantaged. The comparator is another group of people, which in practice can be very hard to compare.
Also, discrimination can be justified in a narrow selection of areas and circumstances, when the aspects are genuine requirements (such as not providing driving lessons for blind persons). Direct discrimination is never justified. Indirect discrimination can sometimes be more of a grey area, and then you have to prove that there is a disproportional disadvantage for a group. Also a failure to provide reasonable accommodation is discrimination (art 2 definitions).

Multiple discrimination is also for the first time recognized in the CRPD (art 6 Women, art 7 Children and preamble n which contains a non-exclusive list of other grounds). Multiple discrimination means discrimination on more than one base. This can be additive discrimination, in which 1 ground adds up to another, and the person is double disadvantaged. It can also be intersectional discrimination, where the combination of grounds is relevant in essence for discrimination (such as for example forced sterilization of women with Down’s syndrome). In intersectional discriminatory cases it can be very hard to find a comparator (is it non-disabled women, or men with Down’s syndrome?). To challenge this intersectional discrimination the CRPD may be needed. States have positive duties to provide equality.

Reasonable accommodation does not refer to housing, although that could be a part of it. Reasonable accommodation is an obligation as it is part of the discrimination-prohibition (art 5.2 and 4.1). Reasonable accommodation needs dialogue with the person involved to assess which disadvantages there are and which necessary modifications need to be made. These modifications should not impose an undue burden (“at too high costs”).

Anna Lawson then discussed with us how reasonable accommodation relates to various other aspects. Reasonable accommodation is compared with other discrimination a new concept that recognizes differences and tries to neutralize these. It breaches with the tradition of sameness and allows for differential treatments. Also indirect, it recognizes differences.
Reasonable accommodation compared to Special Measures (art 5.4 which allow positive actions to benefit disadvantaged groups) differ in the way that reasonable accommodation is everywhere applicable on an individual basis as a part of the non-discrimination approach, while Special Measures are not permanent and apply for groups.
Reasonable accommodation and Accessibility are related, but accessibility means that barriers are removed for groups (“universal design”), while if that’s not the case reasonable accommodation is needed on an individual basis.
Reasonable accommodation also is different from welfare benefits, because welfare benefits are standardized, while reasonable accommodation is individualized and doesn’t have to be money, but can also imply social support, services, facilities and other aspects.
Reasonable accommodation is not subject to progressive realization, because reasonable accommodation is based in the discrimination prohibition and is therefore obligatory for States.

Despite the fact that Anna can’t see, she gave a lecture with a powerpoint presentation, which was very impressive on itself.

After lunch Lycette Nelson talked about Strategic Litigation - Theory and Practice.
Litigation means taking cases to court. Strategic litigation is a method that can bring about significant changes in the law, practice or public awareness via taking carefully-selected cases to court. The clients involved in strategic litigation have been victims of human rights abuses that are suffered by many other people. In this way, strategic litigation focuses on an individual case in order to bring about social change.

We had an interactive session on litigating Legal Capacity. First we identified several actions that could be the objective of litigation (such as challenging capacity tests, discriminatory laws to deprive a person of liberty,, consent to treatment)
Then we identified what aspects the “ideal applicant” for litigating legal capacity would have. It would be a person not an organization (because organizations are impersonal, and the personal aspect may be lost, or the organization may be accused of having an own agenda – however, NGO’s may also have benefits, while they are perceived as representative (class actions), with expert opinions (and good understanding), and be preacting, easier to find, and get public attention. However the European Court does not accept NGO’s as an applicant, it has to be the sufferer).
The person should meet the following criteria: individual case, deprived of legal capacity, easy to understand (single substance, no distraction from the issue), able to express, not extreme, adult, physical stable residence (communication), not threatened by government or guardian, attractive for the public opinion (rather not an ex-murderer) and also the likelihood that a person would settle has to be taken into account, because litigation can take years.
To find such a person, you could look at NGO’s, DPO’s, institutions, social workers, community services, various records, local authorities, journalists, media and so on.
The legal contents to investigate are: national law, strategic planning, treaties (ratified or implemented), previous litigation, policies, frameworks, time limits, funding, political/social climate for support (backlash, timing, allies), impact of a loss, possible outcomes (steps, guidelines, alternative legislation), jurisprudence from other courts in the geographical area, jurisprudence on related matters (guardianship, general discrimination/equality), statistics, analyse which rights are effected and an impact assessment.
Evidence can be: statistics, research, testimonies (impact), alternative, comparative, physical evidence on the case, CRPD standards, guidelines and procedures and information on other situations, preconditions, and expert opinions (if they are any good).
The selection procedure for litigation is a long process, and so is litigation itself. So the drop-out risk has to be considered as well.

The last session of the day was used for Preparation for Moot Court, which is a role play simulation of a court. What we discussed there is still secret.
Everybody was obviously tired after such a full week.


After this we walked into town with a group, and I bought new shoes :) Then I ended up in the skatepark again with Sophie, Oana and 2 of her friends. It was lovely. After that I moved back to the Residence Centre, and sat at the kitchen table with some of my group. I had a great evening. Back in my room I started writing my blog, and studied the Convention on the Rights of the Child (for my own case) but it got a bit late, so I ended my writing at 2 in the night, just before it was finished. I was too tired, so I went to bed.