Submission to the Health Research Council on disability research priorities

Submission on Health Research Council's priorities for disability research - February 2003

The Health Research Council's exclusive focus on the social model of disability for determining research priorities is of serious concern to a large percentage of disability stakeholders in New Zealand.  Identifying the need for more research on reducing the barriers that people with disabilities face to participating in society is a positive step, but excluding research that would lead to medical advances for people with severe disabilities, including chronic, degenerative and disabling health conditions, is definitely a negative move. 
People with disabilities are not an homogeneous group, with common needs, facing common barriers.  For the seriously disabled, and those with poor health and quality of life, the barriers presented by society often become academic because they struggle to maintain an acceptable level of health.   Often the health condition they have is the sole cause and constant driver of their disability. They do need medical interventions to enable them to reach a level of health at which they can contemplate participation in society, and then have the luxury of facing the barriers of attitudes and access that would come to the fore. For them, research into their health condition is the priority solution to the disability.
NZORD's extensive networks in the health and disability sector leaves us aware of a range of views, diverse needs, and some very different priorities among the broad spectrum of disabled people and their families. The social model is of greater interest to those with more stable impairments, and greater ability to participate in society, and thus the social barriers are naturally a very real and high priority for them. But the vast majority of those affected by severe, degenerative and disabling health conditions (and that group constitutes a significant majority of all disabled people) have a different message. It is: do the science and medical research, find the cause, develop screening, treatments and cures, and make prevention measures available to us.
The former CEO of Alzheimer's New Zealand summed it up well when she wrote to the Minister last year, saying "Alzheimer's is not a social construct". I have discussed these issues directly with the Minister for Disability Issues and the Director of the Office of Disability Issues. Both assure me that while a key message of the New Zealand Disability Strategy is breaking down society's barriers, (a message we support) the Strategy is not intended to overlook the essential health needs of those with severe, degenerative and disabling chronic health conditions. Having it interpreted that way by the HRC would be most unfortunate, because it would be based on a false premise of needs within the disability stakeholder community, and an incorrect assumption of how the Strategy should be implemented.
The Health Research Council's current research priorities for disability, are biased towards the interests of those disabled people that are well enough to get out the front door to seek work and lead active lives.  This is discriminatory and not reflective of the needs of many disability stakeholders.  A truly representative research strategy will take into account the many and diverse needs of people with disabilities in New Zealand and not exclude those that are currently unable to achieve stability in their health status, an acceptable quality of life, or even retain the life they have.
NZORD asks that the HRC reconsider the exclusive focus on the social model of disability and supports research that will benefit all disability stakeholders. 
John Forman
Executive Director