On July 15 I will discuss supported decision-making at IASSIDD, here is the abstract:

With the Convention on the Rights of Persons with Disabilities (CRPD) in force in a majority of the world’s countries, the necessity to frame human rights inclusively and accessibly is firmly established. The move from wanting to “fix” people by focusing on perceived deficits and medical aspects of impairment to needing to “fix” societies by reducing attitudinal barriers is underway, still haltingly in many places.

Enabling and empowering persons with disabilities is comparatively easily done on an individual basis. The negotiation of the Convention itself is a case in point on how processes can shift quite dramatically, when the meaningful participation of persons with disabilities is made possible. Importantly, a lot can be learned generally from this and related processes in how marginalized groups can and should contribute to mainstream policy and law development.

The profound challenges of the Convention’s implementation arise at the law and policy level and in its application to larger institutions. How does one shift from well-tested routines and carefully planned and well-intentioned procedures to an approach that empowers people to live independently? How does one move from cotton-wooling people to embracing their need – and right – to make mistakes, go overboard and transgress?

A core expression of the right of all persons with disabilities to equally enjoy all human rights is the right to act their legal capacity. The application of this provision (Article 12 CRPD) raises some profound challenges in enabling the decision-making of persons with disabilities.

But does it really?

Granted: there is a need for more assistance, increased support and added resources. But is there really such a difference in what we describe as supported decision-making for persons with disabilities to what people in the so-called mainstream practice every day? How, exactly, is the process of a prime minister being advised by an army of advisers different from supporting the decision-making of someone who has an intellectual impairment?

Not wanting to diminish the responsibilities of prime ministers and the complexity of some of the issues placed before them: it appears that we are all too easily pushing the decision-making of persons with disabilities into a special realm with separate rules and different standards, which are also linked to status and its attached economic might.

The idea of inclusion is not just that we enable persons with disabilities to be equal, to enjoy the same rights and freedoms – as they should have already for a long time. The challenge lies in questioning the ways in which the mainstream operates routinely and how persons with disabilities – due to being labeled “different” and “special” and “needy” – are missing out.

None of the representatives in mainstream society and leadership positions would ever think that they have support in decision-making. But very few people actually make bigger purchases or investments without consulting “someone.” The social and cultural codes that are applied here, are frequently denied to persons with disabilities, particularly in those settings where they are separated and treated “differently.”

Persons who have guardians point to the impact of their guardianship on their social and societal standing. They report feeling stigmatized and sensing the effect of their guardianship in areas of life beyond their guardianship’s scope. While well intentioned and often reasonably applied, guardianship creates and reinforces stigma. The CRPD provides an opportunity to revisit engrained routines and calls into question the most well meaning of policies.

Revising such policies, including some important legal questions that require thorough examination, a core obligation of the CRPD has to be upheld and implemented: ensuring the meaningful participation of persons with disabilities at every stage (Article 4 (3) CRPD). As the first experiences prove, meaningful participation fundamentally changes the conversation; it also improves the quality of the outcome in immeasurable ways.

Inclusion also means that we keep in mind that the Conventions is not a special set of provisions for persons with disabilities: it is firmly grounded in the human rights obligations that precede it. Importantly, the right to act legal capacity is also enshrined in the Convention on the Elimination of All Forms of Discrimination Against Women: Article 15 thereof. If one ponders the significant changes that women’s liberation has brought across the globe – and not withstanding the manifold gaps that still mar the road to gender equality – one gleans the profoundness of the paradigm shift that is encapsulated in the right to act legal capacity.

In going forward it is in everyone’s interest to ensure the meaningful participation of persons with disabilities. The obligation of the CRPD should be used to advance the quality of the debate rather than be viewed as a cumbersome obstacle. It is equally important to remember the ways in which society can push itself, e.g. changes and ongoing challenges in gender equality. The support for decision-making of those in power, e.g. prime ministers, should be our guiding light in ensuring the empowerment of persons with disabilities to make their own decisions – including: mistakes!

On the occasion of International Refugee Day a guest blog on the Landmine and Cluster Munition Blog:

Disability comes in various forms – mobility, vision, hearing, sensual – and affects people of all walks of life. Refugees are no exception: on the contrary, they represent as much a kaleidoscope of society as any other realm of life. What is more: wars, armed conflict and other causes of humanitarian crisis as well as situations of risk can often lead to animpairment, including by landmines, cluster munitions or other explosive remnants of war.

Impairments and physical and social barriers combined, result indisabilities. A “Chronically normal person” is a label that can be attributed to those persons who believe that they do not have an impairment of any sort.

To continue reading.

In a NYTimes Editorial the “Spread the Word to End the Word” campaign is featured with a particularly poignant text. Lawrence Downes quotes a self-advocate of Bestbuddies, John Franklin Stephens to explain why the “r-word” is unacceptable. By the way this week is “End the R Word” campaign week:

 I know people who care about language who do not see themselves as heartless and who do not see “retardation” as anything to get worked up about. To them, banishing the R-word for another clinical-sounding term is like linguistic Febreze: masking unpleasantries with cloying euphemisms.In this, as in other cases of discrimination, it’s probably best to let those affected speak for themselves.

Here is John Franklin Stephens, a man from Virginia with Down syndrome who serves as a “global messenger” for the Special Olympics. He has written op-ed articles giving lucid voice to thoughts you may never have heard before:

“The hardest thing about having an intellectual disability is the loneliness,” he once wrote in The Denver Post. “We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.”

“So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.”

CBM Australia has launched a campaign, “End the Cycle” on the need to empower persons with disabilities to stop the sequence of persons with disabilities being among the poorest of the poor on account of being invisible, marginalized and excluded. Sign up here to support the call.

The NYTimes online has a series on the “Realm of Senses“: it features the New York impressions and perceptions of people who have lost a sense. Pictures by Béatrice de Géa accompany the description of people like Katherine Vasquez who does not have sense in her legs and feels like “walking on clouds” when exploring the city in her wheelchair and Martin Greenberg, who is deaf-blin and “captures the city through its vibrations.”

The NYTimes reports that India is discussing the constitutional recognition of the right to food. While obviously part of a political debate, which also eyes likely effects in upcoming elections, the essential question is: should there be a right, an entitlement to have access to basic food stuffs?

Jennifer Bartlett in a NYTimes Online column, “Assumptions” for city room blog describes her experience venturing through New York with cerebral palsy.

Micah Kellner, a NY assembly man, responded with the following letter:

Ordinary New Yorkers expect to be treated according to a simple standard of common courtesy and respect, and those of us with disabilities are no different. Yet too often we are confronted by strangers who make bizarrely inappropriate comments or offer unnecessary and unasked-for expressions of sympathy. There is a double standard here — as if we are not entitled to the same basic consideration taken for granted by others in their daily interactions.

Kellner stresses the importance of overcoming social barriers: “equality begins with respect for people’s differences, and with overcoming deep-seated preconceptions about people with disabilities.”

As part of its Demand Dignity Campaign, amnesty international, in its Report From Promises to Delivery demands that the fight against poverty – the spear head of the Millennium Development Campaign – be based on human rights.

The Special Rapporteur on Extreme Poverty, Magdalena Sepulveda in her Report to the Human Rights Council warns that the changing of societal patterns and family living arrangements means that older persons are at an increased risk of extreme poverty.

“Societies are abandoning traditional care practices,” the Special Rapporteur warns and calls on systemic measures such as realization of the right to social protection through universal pensions.

The United Nations have set eight goals to be reached by 2015: halving poverty, ensuring universal primary education for all among others. Persons with disabilities are largely being left out of the policies and programs put in place to reach the so called Millennium Development  Goals (MDGs).

The General Assembly of the United Nations has adopted a resolution calling for the realization of the MDGs also for persons with disabilities. The world’s parliament among others calls for ‘explicit’ mention of persons with disabilities in the upcoming review of the goals. The Journal for Disability & Development has published an analysis of the resolution. More information on the issue can also be found at www.IncludeEverybody.org

Happy New Year! The European Union is dedicating 2010 to the fight against poverty and social exclusion, see EU framework on poverty + social exclusion.

In a somewhat flippant remark, Australia’s out-going Governor General Michael Jeffery, tried to limit the indigenous people still feeling the consequences of exclusion to 100.000. Jeff McMullen responds very plainly via the Op-Ed pages of the Age: 

“If you walk in the shoes of an Aborigine or Torres Strait Islander, you know that whether you live in the city, regional Australia or a remote community your life expectancy is 17 years less than the rest of Australians. Your health, housing, education and employment opportunities are also far worse. Your social stress and the racism and discrimination you endure occur in most parts of Australia. You belong to an underclass of disadvantage that allows escape only by the most extraordinary or fortunate minority, who against so many odds are able to fight for and achieve that elusive equality.”