We want access to services, not compassion

The Health and Disability Commissioner is currently reviewing the Health and Disability Commissioner Act 1994 (the Act) and the Code of Health and Disability Services Consumers’ Rights (the Code).

DPA NZ has sent a letter to the Health and Disability Commssion about the possible inclusion of the right to ‘Compassion’ being added to the existing rights under the code as suggested by the Compassion in Healthcare Trust.

Your thoughts are welcome on this subject and will be forward to DPA NZ, the National Assembly of People with Disabilities.

Review of the HDC Act and Code of Rights: Re Compassion

Following this morning’s meeting on this issue, and the suggestion that it be included in the Health and Disability Services Code of Consumer Rights, DPA wishes to put onto paper the substance of it’s comments to the meeting. We are grateful for the opportunity to do this.

We speak as the group of consumers who experience both health services and disability services-the code in its current formulation covers both, so that we are talking about the rights of 800,000 people who may use disability support services and health services: the two are not interchangeable.

DPA opposes the addition of compassion to the HDC Code of rights, although we do support the practice of compassion by healthcare professionals towards all of those they encounter in their work- we think compassion is a compelling virtue, and of great value in health practice. But there are two key matters that mean DPA is opposed to its addition to the code

First, and most importantly, the use of compassion in relation to disability services is inappropriate. Over the last thirty or so years it has become more widely recognised that disability is not a subset of health, and it is utterly inappropriate to conceptualise, design or deliver disability services in the same way as health services, and within a medical model framework. As health service consumers we expect to be treated equally, in terms of the medical care we receive, with non-disabled consumers.

Alongside this sit understandings that disability is not a code word for helplessness, a passive recipient state of suffering and dependency and to be “done to” rather than the reality that we are expert in our own impairments and want active control over the way disability support services are delivered. Compassion for our perceived “sufferings” and it’s appearance as a facet of how disability services are delivered is not what is wanted. 

The concept of “compassion” is a human emotion that would not add any value to anyone who is just wanting a service that enables then to get on with their lives; in this context we refer to disability services.  It would be as out-of-place to insert compassion into disability services as it would be to ask a shop assistant to show compassion when they are selling you a CD.

The harm of adding the right to be treated with compassion to the Code is that it reframes disability support in a medical model because the only reason to show compassion to another human being is when you think that they are suffering needlessly. This then requires the service provider to reframe their thinking about disabled people as suffering which is a very old-fashioned view.

We are also concerned that turning a concept like “compassion” into words could set off a lengthy and unfulfilling legal. If there is ever a complaint based on the right to compassion (and since there have already been disability complaints about the right to respect, this would be inevitable) the Commissioner will probably use a test-case to refine or expand the legal definition and create bench-marks for future cases. Invariably, such refinements often turn an original concept into something that is equally unhelpful to everyone.

An example of how nebulous concepts transformed into legal definitions can hamstring disabled people in New Zealand is the term “reasonable accommodation”, as used in the Human Rights Act.  When the Act was expanded in 1993 to cover disability discrimination, disabled people saw reasonable accommodation as a potential avenue for us to have our rights met. But the necessity for very precise and legalistic definition of the term has meant it is not a support to us in having our rights met. In practice it has turned out to be a battle between our moral rights for support versus our legal rights, and lawyers argue the meaning of the term into increasingly restrictive options that are amenable to legal processes, but not to disabled people getting services. We do not think such a process in the HDC code benefits consumers, disabled or not.

Disabled people already have more immediate problems with the Code in that it doesn’t include access to services.  Adding “compassion” and its subsequent distractions around interpretation and implementation would further distance us from having our legal rights met as disability support services users.

If “compassion” is added to the code, we would have to prostitute our core values as disabled people so that they align with the new (old) values that disability support providers will need to be able to comply with the Code. DPA would strongly oppose such an action and urges the Commissioner to consider/suggest alternative (non-code) ways to emphasise compassion.

Please do not hesitate to contact the writer if we can be of assistance

Best, Wendi Wicks
National Policy Researcher
DPA (NZ) Inc.
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