Secretary-General Ban hails entry into force of treaty on disability rights

Copied verbatim from the UN News Service
(http://www.un.org/apps/news/story.asp?NewsID=26199&Cr=disab&Cr1=convention)

3 April 2008 –Secretary-General Ban Ki-moon has welcomed the entry into force of the first international treaty on the human rights of persons with disabilities, after the required twentieth country ratified the landmark convention today.

“It is a historic moment in our quest for realization of the universal human rights for ALL persons, creating a fully inclusive society for all,” Mr. Ban’s spokesperson Marie Okabe said in a statement celebrating the rapid progress of the Convention on the rights of Persons with Disabilities, which was adopted in December 2006.

“The Convention will be a powerful tool to eradicate the obstacle faced by persons with disabilities,” she said, pointing to discrimination, segregation from society, economic marginalization, and lack of opportunities for participation in social, political and economic decision-making processes.

Today’s ratification by Ecuador means that the Convention, along with an optional protocol that will allow individuals and groups to petition for relief, will be legally binding as of 3 May. Tunisia and Jordan also ratified the treaty earlier this week.

Through today’s statement, the Secretary-General also congratulated the States that have ratified or acceded to the Convention. Some 126 countries have signed the Convention since 30 March 2007, and 71 have signed the optional protocol.

“It is estimated that there are at least 650 million persons with disabilities worldwide, of whom approximately 80 percent live in less developed countries,” Ms. Okabe noted.

As many as two-thirds of United Nations Member States do not have any legal protection for people with disabilities, according to the UN Focal Point on Disability Akiko Ito, even though they comprise one in 10 of the global population.

“The Convention, together with its Optional Protocol, is deeply rooted in the firm commitment of the international community to rectifying the egregious neglect and dehumanizing practices that violate the human rights of persons with disabilities,” Ms. Okabe concluded, calling on all States that have not yet done so to accede or ratify it without delay.

In a statement issued this past weekend, more than 20 UN departments, agencies, programmes, and funds pledged their support to implementing the convention.

The newly-formed Inter-Agency Support Group for the Convention said that support will focus on six main areas: policies to support the purpose and objectives of the Convention; programmes including international cooperation; capacity-building of Member States, civil society, and the UN system; research and access to knowledge on disabilities; accessibility; and the Committee on the Rights of Persons with Disabilities.

The hope for a just future for Indians with mental disabilities

India was one of the early countries to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD), and while we can bask in the glory of its ratification, we cannot lose sight of what really needs to happen to bring about a "paradigm shift" in the everyday lives of individuals with disabilities. Persons with mental disabilities have faced some of the harshest barriers to community integration and have been literally stripped of their rights through actual legislations and regulations.

It is a shame that the Persons with Disabilities Act, in existence since 1995, does not even consider people with mental and intellectual disabilities as deserving contenders for their employment and educational concessions and quotas. The Mental Health Act of 1987 dedicates most of its energy not to the empowerment and safeguarding of rights of survivors, but rather the manner in which the State can legally institutionalize people, transfer people between institutions without their consent, and release them of any rights to property. Firstly it adopts a medical model framework, and then concentrates only on the providers (not receivers) of care and services! We have Marriage Acts that prohibit people with mental health conditions from marrying if their disorder is considered unfit for marriage or procreation, and Adoption Acts that deny their rights to become parents.

While most legislative guidelines pay lip service to the notion of the individual's informed consent, they mainly focus on having guardians act on their behalf irrespective of their own opinion about it.

The CRPD offers hope and a chance for an actual paradigm shift in the way our system thinks and operates, just as the embodiment of legal capacity represented within the Convention itself. Legal Capacity is discussed within Article 12 on Equal Recognition before the Law.

The CRPD strongly espouses and advocates that not only do persons with disabilities have equal rights as all other citizens, but that they can also exercise their legal capacity and rights in an equal manner - this means that they should have the right to marry, adopt, learn, work, hold property, and vote (taking a few examples) just like everyone else. The presence of a mental disability cannot simply disqualify them from actually being a citizen in the true sense of the word.

Disability rights advocates fought to change the traditional model of substituted decision-making or guardianship in favor of the supported decision-making model that is based on the reality that no individual makes decisions solely in isolation. Each and every person requires and uses a support system comprising sometimes of friends and family and sometimes of professionals. Any supported decision-making system by principle must start with the assumption that every person has the competence to make an informed decision, and then provide any necessary supports the individual may need in executing that decision.

This goes solely against the practice of immediately handing over all power to a guardian once a judge/medical authority deems someone to be legally incompetent. And hence it is in direct opposition to almost every law that adds a clause to strip away rights from someone with a mental disability.

Will we face opposition in doing so?? You bet we will. We will hear from the lawmakers, politicians, and medical professionals who may truly believe that such advancements are misguided and guardianship mechanisms are needed for protection of both individuals with disabilities and society. As I write this, I remember a workshop I attended in Mumbai several years back where the discussion ventured into the need to change marriage restrictions for people with intellectual disabilities. I was stunned to see that the maximum opposition to the elimination of such laws came from parents! These parents were not acting out of any spite, but a genuine instinct to protect their children from abuse and a serious concern that they could not keep up with the demands and responsibilities of married life, let alone parenthood. And as I reflected on this, I realized that the true problem was the complete lack of any support systems (including measures, policies, and practices) for persons with psychosocial and intellectual disabilities and their families to allow them to envision a different reality.

Hence I am hopeful and excited that the CRPD will finally allow persons with disabilities, their families, and advocates to fight for amending not only our mental health and disability laws but all laws that affect people with mental disabilities. Instant implementation might be wishful thinking as our systems, policies, professionals, and attitudes are sorely ingrained with guardianship. But the CRPD gives us a tool to ask for change, it complements our arguments to do what is just, it supports our advocacy when we fight to recognize that all individuals should have the right to exercise their rights! It will be a challenge but there couldn’t be a better time to confront it.

India proved me wrong...

India became the seventh (or could just be sixth) country to ratify the UN Convention on the Rights of Persons with Disabilities on October 1, 2007! Check out the map with the current signatories and ratifications here...

http://www.un.org/esa/socdev/enable/documents/map031007.jpg

I was very pleasantly stunned to be honest...I did not expect India to ratify so soon. Proved me wrong there...

The real work begins now though. India has taken on a huge challenge as our current legislative and social infrastructure is seriously lagging behind the standards put into the Convention. The Indian delegation had raised several concerns during the deliberations of the Articles of the Convention, not the least of which was that the country just does not have the resources to provide and ensure the the kinds of measures the Convention demands.

I am of course extremely pleased that we did ratify the Convention. It gives some teeth to advocates and their demands for change. We will need to radically change a lot of our traditional thinking on treating and governing citizens with disabilities. Our policies will need a real make-over. But I'm not complaining.

India should take a strong stand against military oppression in Burma

There are a lot of articles currently both criticizing and explaining New Delhi's mild public support for the pro-democracy uprising in Burma. Most blame the extra safe stand taken by India to be a culmination of business and energy interests in Burma, not losing any advantage to China, and anti-terrorism partnership with the military government in Burma.

I am ready to accept that it is not easy for the powers that be to make this decision. There are probably significant pros and cons in taking such action when it comes to long-term foreign policy, regional hold on power, financial and strategic interests etc. etc. India is weighing its options very very carefully and does not want to slip on this tight rope walk...

However, as a citizen, I want my government to do something constructive if it is in a position to do this. At the very minimum lets not give weak-knee'd statements such as "we wish for a great ending all around" and "we never interfere in others internal problems." Do we have means to take both overt and covert measures to support the pro-democracy protests and non violence towards the protesters? Because if we do, I want my democratically elected government to use them.

Can we engage in smart diplomacy to get the junta to not fire indiscriminately at protesters? Do we have any leverage in demanding that they do this or that...if yes, let's use it...let's use it.

This is a request, my request to my government, if there is something we can do to stop the oppression...let's do it. Let's not stand by and see blatant human rights abuses occur as we trade business deals. If we want to become a dominant regional power, we also need to have the guts to take positions that may discomfort ruling governments. We cannot become a regional power to reckon with if we are only too happy to shun the responsibility that can come with it...

Does that mean imposing our views, no matter what, on a people...? Nope, we don't abuse it, but let's use it at least...

AIIMS begins telemedicine initiative for cancer consultations

http://www.hindu.com/2007/09/26/stories/2007092660590300.htm

Informed Consent

As a citizen I am always disturbed on hearing about violations of an individual's right to know what X, Y, or Z is doing to them and their bodies, because it is easy to put yourself in the victim's shoes and experience yourself squirm at the thought. However as a researcher I am even more incensed as I know that there are and need to be very strict guidelines that you must abide by when you deal with human beings in any sort of intervention.

A story in the Daily News and Analysis website on private hospitals in India testing patients for HIV without their knowledge or permission prompted this post...(I am trying to get a working URL for the article). The sheer ignorance and stupidity about testing every patient for HIV for the safety of hospital workers is a topic for another post.

It all goes down to the concept of ethics. You do not perform any sort of intervention on people, even if you think it is for the best, unless they give you their informed consent. Remember informed consent is not one word but two: a) People need to tell you, in a completely unambiguous manner, that it is okay to do what you want to do to/with them and (b) it has to be informed i.e. people have to know and understand what it is that you propose to do with them and why.

This is absolutely crucial in medical interventions...it does not matter if you think you are the expert, that people will anyways not understand, and hey you are doing it as God for their own good, you do not poke and draw fluid without first telling them what you are drawing it for. If that means you sit and explain what you need to do, you sit and explain.

Now this brings up interesting socio-cultural questions...is it common sense that informed consent is a necessity...or is it a regulated legislative guideline that you obey? In most cases, quite unfortunately, it needs to be the latter. There have to be strict legislative guidelines about what you can and cannot do.

Obtaining informed consent has to be an established legal necessity without exceptions. There should be no room allowed for ridiculous explanations about why it wasn't considered necessary to obtain consent.

Hmm, its time to look into India's legislation on informed consent...

ADAPT convinces Gov. Blagojevich to close down the Lincoln Center

They got the commitment they wanted and more!