Definition, Data Collection, Disability

1
Definition, Data Collection, Disability Human
Rights Challenge Response

• Phillip French
• Chief Executive Officer
• Disability Studies Research Institute

2
Introduction

• Tensions between social science human rights
  perspective
• Definitions most research data collection
  viewed as derivative of medical model
• These tensions evident in the development of ICF,
  but largely accommodated
• Debate reignited in development of a United
  Nations convention on human rights of persons
  with disability
• Calls for paradigm-shift to social model

3
Convention - background

• December 2001 General Assembly establishes Ad
  Hoc Committee to consider proposals for a new
  treaty dealing with rights of persons with
  disability
• 7 Sessions of Ad Hoc Committee held to date
• Initial draft text prepared subject to first
  second readings
• Synthesised Chairs Text recently released
  debated
• Negotiations projected for completion in August
  2006
• Adoption of the Convention projected for early
  2007

4
Convention - overview

• Preamble
• Part I 9 interpretive articles
• Part II 20 articles dealing with civil
  political economic, social cultural rights
• Part III will establish national
  international implementation monitoring
  framework
• Part IV 9 formal articles related to entry into
  force etc
• Comprehensive or hybrid
• Elaboration application of existing rights

5
Defining disability

• Controversial debate
• Chair originally suggests no definition
• Superficial consensus convention applies to all
  persons with disability Article 1
• But no definition may be major barrier to
  effective implementation monitoring

6
Domestic implementation

• Difficult to ascertain scope of obligations
• Substantial, not formal equality
• Requires reasonable adjustments special
  measures
• Failure to extend convention protections other
  benefits to some groups
• Confusion between definition targeting measures

7
International monitoring

• Difficult to assess compliance with convention
• Difficult to develop universal jurisprudence
• Difficult to determine admissibility of
  communications (complaints)
• Misdirected use of resources of treaty body
• Potential to bring treaty-body convention into
  disrepute
• Disincentive to ratification of convention
  transparent dealing with treaty body

8
Reasons definition difficult

• Objections of disabled persons organisations
• Rejection of medical model
• Disability as social construction
• Self-determination rather than external
  categorisation
• ICF viewed as medical model
• Disability not fixed category

9
Reasons definition difficult

• Objections of Governments
• Distributive effect
• Tensions with public health public order
  imperatives
• Undeserving disabled
• Public responsibility for own fault disability
• Dilution of measures intended for traditional
  groups potential cheating of traditional
  groups
• Uncertainty of State obligations

10
Definition current status

• Major debate at Seventh session
• Australian government push for definition
• Majority view definition is required
• Social model definition preferred
• Chairs proposal for definition
• Issue to be resolved in August

11
Chairs proposed definition

• Disability results from the interaction
  between persons with impairments, conditions or
  illnesses and the environmental and attitudinal
  barriers they face. Such impairments,
  conditions, or illnesses may be permanent,
  temporary, intermittent or imputed, and include
  those that are physical, sensory, psychological,
  neurological, medical or intellectual.

12
Research Data-collection

• Controversial debate
• Rejection of medical model
• Rejection of prevention-related research
• Research data collection provisions now
  relatively settled
• Clear consensus ought to be based in social
  model, directed towards realisation of human
  rights

13
Article 4 General obligations

• States Parties undertake to ensure and promote
  the full realization of all human rights and
  fundamental freedoms for all persons with
  disabilities without discrimination of any kind
  on the basis of disability. To this end, States
  Parties undertake
• (f) To undertake or promote the research,
  development, availability and use of
• (i) Universally designed goods, services,
  equipment and facilities, to meet the specific
  needs of persons with disabilities, which should
  require the minimum possible adaptation and the
  least cost to meet the specific needs of a person
  with disabilities, and to promote universal
  design in the development of standards and
  guidelines
• (ii) New technologies, including information
  and communication technologies, mobility aids,
  devices, assistive technologies, suitable for
  persons with disabilities, giving priority to
  technologies at an affordable cost

14
Article 31 Research Data-collection

• 1. States Parties undertake to collect
  appropriate information, including statistical
  and research data, to enable them to formulate
  and implement policies to give effect to the
  present Convention. The process of collecting and
  maintaining this information shall
• (a) Comply with legally established safeguards,
  including legislation on data protection, to
  ensure confidentiality and respect for the
  privacy of persons with disabilities
• (b) Comply with internationally accepted norms
  to protect human rights and fundamental freedoms
  and ethical principles of statistics.
• 2. The information collected in accordance with
  this article shall be disaggregated as
  appropriate and used to help assess the
  implementation of States Parties obligations
  under the present Convention, and to identify and
  address the barriers faced by persons with
  disabilities in exercising their rights.
• 3. States Parties shall assume the responsibility
  for the dissemination of these statistics and
  ensure their accessibility to people with
  disabilities and others.

15
Conclusion

• Disability rights movement counterpoint to
  dominant professional perspectives
• Demands new conceptualisations priorities
• ICF evidence of openness to new perspectives
• Preponderance of research funding priority
  still invested in medical model
• Convention will mandate paradigm shift