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Monday, January 2, 2012

How civilised are our societies?

Happy New Year to our readers!

Wish we could start at 2012 with more positive news then the reported 74 deaths, or more,of people who have intellectual disabilities within the U.K.'s national health system. These deaths were "either caused or complicated by mistakes in hospitals and decisions by staff who failed to treat them properly and displayed ignorance or indifference to their plight, according to the charity Mencap and families of some of those who died."

These deaths were identified as having occurred within the past decade. Intuitively this feels like a very low number. It begs the question: do we know the real number of people with disabilities - and not only those with intellectual disabilities - who have died in the UK's national health system? How many have died or may have received further impairments or illnesses in health systems and hospitals in any country?

Professor Sir Bruce Keogh, the NHS's medical director was reported as saying that "one of the measures of a civilised society is how well it looks after the most vulnerable members of its society." This line is often quoted. But concerns about negative experiences of people with disabilities and health systems are not new. They are increasingly being raised these days but earlier recalls for action do not seem to have made the difference that is required. We seem to have been living in uncivilised societies for a long time, despite promising rhetoric.

Perhaps it is not really surprising that fundamental change with regard to health disparities of people with disabilities or with regard to adverse events in hospitals, or elsewhere, is so hard to achieve.

Most of us live in economies these days, not countries, or societies. The ways in which economics has been practised since the 1980s, influencing almost every sphere of life, has made everyone into health consumers, who often represent the throughput in 'health systems' and hospitals that are run along business lines. In the economic approach to health care efficiency and effectiveness is prized above meeting health needs well. You might remember the hospital awarded as the most effective and efficient one in the entire UK in the BBC's Yes Minister TV series. It was fully staffed and had no patients.

The often complex, are long-term needs of patients who have disabilities, combined with sometimes challenging behaviours and different ways of communication, require time, and careful attention. In essence their health needs are no different to those of anyone else but how the needs of disabled patients are met represent a real  litmus test for the civilised nature of our health systems, or otherwise.

And when the effectiveness and efficiency meet with a medical view of disability the result can be a poisonous mix.

It is attitudinal change that people with disabilities need first and foremost. The attitudinal change that we need revolves around paying attention to health needs, taking responsibility for them, doing so competently and doing so in genuine participation with us as patients. It is doubtful that such attitudinal change could flourish within a dominant economic/medical values framework, which is at odds with it. It is also doubtful that attitudinal change could be sustained by a once-off module given during medical training, or by disability liaison officers within an environment of high staff turnover and a general ignorance about disability. Good disability health advocacy of an ongoing nature will protect some vulnerable individuals and may even affect some attitudinal change, but how do we lastingly transform prevailing attitudes towards people with disabilities within the health system when that system itself is embedded in a society that has a long way to go in fully including people with disabilities as equals?

It seems that only a practical framework that is embedded in all processes within the health system, one that genuinely revolves around care, could transform attitudes and civilise us. Taking care by paying attention to the person's needs, consciously taking responsibility for meeting them, doing so competently and in partnership with the patient can be practised at the admissions desk, in preventive health care, at the hospital bed, by any surgeon and in any surgery. Our actions, values and attitudes continually inform each other.

It seems quite plausible that by first acting within this framework of care we will come to eventually internalise a more positive view of others, who are presently seen as SO different, and transform ourselves as naturally caring people. Doing so does not necessarily cost money. It might even save some. but most of all it seems a sensible approach towards saving lives of those among us who are most vulnerable. A civilised society anyone?

Wednesday, December 14, 2011

Health, care and participation

(Click link to go to story)
The American Association of People with Disabilities (AAPD) is intending to build strong grassroots participation in 2012 among the 50M Americans or so who have a disability. "Our goal is to really engage people with disabilities and mobilize them to participate in the direction of the country"
,said its CEO, Mark Perrielo. "So that when there are debates (about issues we care about), elected officials in D.C. and the state capitols know what the (disability) community is thinking."
The issues they pursue include health, bullying and access to employment.

Socio-economic status is the most powerful indicator of anyone's prognosis for a healthy, good, long life, despite all the money thrown at 'health promotion', know by medical insiders as 'hippy-dippy for its ineffective, frivolous use of public money (see 'The last well person' by Nortin Hadller MD). So whereas we might not immediately think 'Health' when discussing employment, or bullying, these are definitely important factors in pursuing a healthy life.
And when you think about it action towards maximum participation of the grassroots is a core factor in achieving healthy lives for disabled people. In fact the fourth 'stage' in Joan Tronto's framework of care requires it to be present in a relationship of those receiving and giving care. Without true participation, care is not genuine care.
And what about the participation then by those who might be unable to communicate or are mentally incapable of doing so? In pursuing the first three stages: paying attention to need; taking responsibility for meeting it and doing so competently we will likely get to know that person and recognise the ways in which they are able to take part in a participatory care relationship, where many see no such signs. We will get to know whether anyone else knows this person and supports them.
'Care' is for many disabled people a four-letter word because of its patronising associations with the medical model. But, when looking at the real nature of care, it is also an empowering agent in an environment where patients, ill people and those with disabilities experience an unequal power relationship. I believe Michael Fine has argued similarly.
Health (being 'whole') and care therefore are quite compatible with pursuits for social inclusion and participation in a civil society.

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.