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Tuesday, December 6, 2011

Disability, Health, Care and Social Justice

Disability and health are uncomfortable bed fellows.

Disabled people have struggled for decades in getting out from under the medical gaze: seeing disability as a defect, to be cured, and perhaps discarded. And just now that people with disabilities appear to be arriving as a recognised oppressed minority, acquiring rights at a rate of knots, for greater choice and autonomy, greater access to community life, the issue of health disparities between them and the rest of the population is back to bite them.

Many health & disability issues remain below the radar,  including in disability movements (UK excepted), in part perhaps because we are more comfortable in talking about 'rights', access to transport, education, work. All very important, but when your employment and school participation falls in a heap because you are just not getting the health care that you need, these issues pale in the light of serious threats to your health.

It is time for more light to be thrown on this injustice to disabled people. And the time seems right.

Increasingly there is a realisation that health disparities for people with disabilities are great and have serious impacts, like illness, further disability and death.

About 15% of the worlds population has a disability, 2.4% of whom experience difficulties in functioning. Disability experience is constructed by impairment, social values and attitudes and environmental barriers. Since health is highly influenced by one's socio-economic status it is not surprising that the high level of social devaluation experienced by people with disabilities results in their health needs being inadequately met. For example, 46% of Australians with a disability reported ill health in 2007-08, compared to 5% of the non-disabled population.Yet they rely 10 times more heavily on health services than do others. High hospitalisation and primary healthcare rates combined with the effects of poor attitudes, misdiagnoses, underdiagnosis, ill-treatment, communication problems and neglect in the face of their often complex and long term health needs. 

Those who are among the most vulnerable in this health care context include people with intellectual disabilities, mental illness, and acquired brain injury, especially in cases of multiple disabilities.But anyone with a significant disability can easily fall between the cracks of a health care system that is not geared up for their needs. The consequences of them can be serious indeed.

We have moved many out of institutions into the community but, until now, we forgot about their health status - perhaps particularly because of the medical model cloud from under which we tried to escape in the first place. Instinctive reactions in identifying its inevitable presence in discussing safeguarding the wellbeing of people with disability within an often dysfunctional health care (an often four-letter word for many in the disability movement) 'system' presents challenges.

Challenges in finding audiences for identifying the issues and obtaining support in advancing remedial strategies. It also presents challenges to those few pioneers, in particular who have direct experience of disability and chronic illness, and may work in relative isolation, in primary health care, hospitals or in research institutes. There is a great need for such individuals to be supported within a community that shares common concerns in disability and health, shares experience, research and information. A community that is truly prepared to engage with these issues.

Issues in health and disability are not for the faint-hearted and uncommitted. They involve tensions with established negative views of disability  by those in power, doing good research and skillful advocacy. They involve education, attitude change and collaboration across disciplines, and engaging with various views of disability and health. They are demanding, and potentially rewarding for those that commit themselves to this area.

Above all engagement in this area involves learning. Learning about the nature of vulnerability and dependence. What is disability? What is health exactly? What is real care and what does justice mean applied to health care for people with disabilities?

How do we safeguard people from harm and maximise the the quality of their health, in a society that too often emphasises effectiveness and efficiency over paying proper attention to needs.

Where responsibility for things going wrong is avoided.

Where competent care is affected by health care staff attrition and turn-over; shifting more responsibilities to lower level trained personnel; and everybody is in a rush.

Where people with complex needs, different behaviours and ways of communicating can be labelled with a Do Not Resuscitate order, because of prejudice, ignorance and conceptual confusions about what a healthy ('whole') life is.

Where truly participatory care, in a two-way (or more) relationship, is a rarity.

And where the ill-outcomes of bad care rarely serve as lessons to actually do better.

If this can be changed for the better for disabled people, healthcare would be a better experience for everyone.

Join us on this journey!
Disability, Health, Care & Justice Discussion Group

This blog is the companion to the international 'Disability, Health Care and Justice' discussion group. Its instigators are Pauline Boyles and Erik Leipoldt.

The Disability, Health, Care & Justice Discussion group's Aim is:

To contribute to safeguarding and advancing the health care treatment received by people with disabilities in health care systems, including primary health care and in hospitals, by discussing and sharing information and actions.

Its Purposes are:

1) To discuss, and share information and research on disability experience and health, both of adverse experiences, and on initiatives that are responsive to disability/health needs;

2) To be a vehicle for mutual support for those people with disabilities, and others who work on and live with these issues, and who share a commitment to our aim.

Who can contribute to this discussion group?

All who have a genuine interest in health-and-disability issues, who want to contribute or have a need to share information and disability experiences in health care systems. Members may thus be people with disabilities, families, friends, allies, researchers, health care workers, advocates and so on.

We hope that this discussion group and blog will become a rich source of information and mutual support on disability, health, care and justice.

Join the Discussion Group here

You find the discussion group here: 

If you would like to subscribe to our group, do it from that page or:
For further assistance, please visit

See you on the discussion list!

Meanwhile we think this video from the Disabilities Health Research Network (2005-10) gives a taste of  participative approaches that show the way forward in safeguarding the health of disabled people.

1 comment:

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