I recently attended a presentation on health literacy. We were given a list of those people in the community who might have difficulty with health literacy. They included:
- poor people
- depressed people
- elderly people
- distressed people
- people with English as a second language
- people with long term health conditions or poor brain function.
We were also reminded that in New Zealand we have the right to health information under the Health and Disability Code of Consumer Rights:
- Right 5: the right to effective communication.
- Right 6: the right to be fully informed.
“Health literacy” is defined as “the ability to obtain, process, and understand basic health information and services to make appropriate health decisions (K?rero M?rama, 2010).”
It is ironic that the medical and allied professions which have medicalised disability in New Zealand for generations have paid little or no attention to health literacy among disabled people.
I asked the presenter why blind, Deaf and other disabled people weren’t on that list. She thought for a bit and then said, without the defensiveness people sometimes have in such situations, the assumption probably was that ‘their own organisations” would do that. I am not shooting the messenger who got the point. But does that mean that struggling, poorly resourced not for profits are expected to do what large publicly funded organisation with legal obligations to do so, won’t?
Are we seen by the medical and allied professions as unworthy of access to everyday health information because our impairments can’t be “fixed?” Is it seen as too hard? Or do they think that the numbers (actually 20% of the population,) are too small to worry about. They are scientifically trained yet seem unable to apply simple logic to what seems blindingly obvious to me, if you will pardon the pun.
It is the reality of daily life where the crunch is felt. I remember sitting opposite a well-educated blind friend in a café as he told me sadly that he could not find any information about his wife’s mental illness and of his frustration with not being able to advocate for her in the way he wanted to within the mental health system because of the lack of accessible information.
I often ask health professionals when they hand me a piece of paper with information about some routine health procedure. “Do you have this in an alternative format?” The answer is usually incomprehension and silence. I am probably marked as a pest in several places by now.
While health literacy is about understanding and managing our impairments, it is equally about the ordinary things;
- pregnancy advice
- healthy eating
- giving up smoking
- getting our kids vaccinated
- family planning
- and generally managing our health and that of our families.
That might be quite separate from our impairment/s.
Of course disabled people can be present in all of the groups outlined above as well. But the lack of inclusion in health literacy strategies and initiatives is an example of the way control of access to information can create barriers to realising the human rights to some New Zealand citizens. The right to health is enshrined in the Covenant on Economic, Social and Cultural Rights, and importantly the Convention on the Rights of Disabled People (CRPD), which the New Zealand government has ratified and has obligations to meet.
See also my earlier post on this subject, Health literacy for grown ups.
