Philosophical and Ethical Basis of the Convention
I'm delighted to be with you at this Symposium.
I'm here representing the World Network of Users and Survivors of Psychiatry and am a consultant to their board. WNUSP was established 1991, has held two international conferences, and is organizing people with psychosocial disabilities around the world.
I live in California, near the Pacific Ocean, not too far from San Francisco.
I am a person with a psychosocial disability - I've been in six hospitals, three times against my will, three years altogether, handcuffed, electroshocked, chemically restrained.
I didn't like any of it.
I'm an example, not an exception, of recovery, that even after a serious psychiatric diagnosis, people recover and thrive.
I believe this convention is about values, the values of connection and inclusion and family and community and, at the root, about the value of choice.
The Convention is about refusing to reject other human beings because they are different or because they need supports.
The Convention is about appreciating variety, appreciating difference.
The Convention is about asserting that everyone has legal capacity, that everyone has a right to live in the community, that disability is not a reason to limit a person's liberty, that everyone has the right to a valued place in a barrier-free world.
The convention is about equality of opportunity and the various supports people find useful to make their own place, use their own skills, develop their own strengths. It's about deploying state resources to create equal opportunity for participation.
The Convention is about universal design, using design-for-all standards in construction, in designing cookware and computers and web pages.
And the Convention is about communication, stating that communication is a human right, one of the fundamental rights, translating spoken languages, signing, plain text, augmented communication, text readers, Braille
The Convention has some 30 Articles reflecting the many areas of people's lives where rights must be guaranteed.
I'm especially interested in technology that today helps to assure communication rights, information and communication technology, ICT, and in how universal design standards also apply to giving and receiving information.
And I watch how each and every word we choose shapes the ideas we share. For language can be used to separate, isolate, shame.
People with disabilities have joined in an International Disability Caucus which works in person in New York at the AdHoc Committee meetings and in between sessions electronically. One of our most challenging tasks is to define disability at the philosophic and ethical level, and to decide whether to guide towards specifying to whom the Convention applies in terms of monitoring, implementation and benefit eligibility.
There are several ways to understand disability. Some think it is a sign of sin, a punishment for wrongdoing, or an invasion of an evil spirit. Some think it is a medical matter, a genetic engineering mistake that must be fixed. Especially for disabilities that occur after birth, some want to rehabilitate and restore the person to the prior state. Today advocates generally prefer the social model, understanding how society and the built environment constrain opportunity. For instance, it is not that a person uses a wheel chair that is disabling, but rather that society has not included wide doorways and ramps for wheelchair access.
In the United States, our national laws started with protections for people with development disabilities and our most recent disability legislation is about the right to vote. We implement our legislation across our departments of health, education, and rehabilitation, but I think when you design your infrastructure that integration is a better model.
An example of how these protections and these kinds of ideas translate from international to state is the values and vision statement of the organization I Chair in California. We say:
Protection and Advocacy will:
The system so it values diversity, culture and each individual.
A barrier free, inclusive world where people with disabilities enjoy
Freedom of choice,
Freedom from abuse, neglect and discrimination.
Quality, culturally responsive, safe, afford-able, accessible
Individual and family supports,
chosen and directed by the person with a disability.
Opportunities for satisfying
Community service, and
Family and social relationships.
The human and legal rights of people with disabilities."
(PAI Vision Statement - www.pai-ca.org/Mission.htm)
The convention and related laws will make a space for opportunities to happen. Civil society must also be an actor, in particular disabled people ourselves. Which we summarize with our slogan - Nothing About Us Without Us.