Category Archives: Disability Rights

by | August 21, 2012 · 2:03 pm

Health literacy and the right to health

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.

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Filed under Disability Issues, Disability Rights, Information Accessibility

by | May 1, 2012 · 6:15 am

Dismantling disableism – Three powerful tools

This is my contribution to Blogging Against Disableism Day.

There is no doubt that there is a lot of it about. Disableism diminishes both the disabled person and the perpetrator. It is a clumsy made up word to describe something particularly unlovely so it is appropriate that it is an ugly word.

Disableism diminishes both the disabled person
- and the perpetrator.

Wikipedia describes “disableism,” or “ableism” as it also calls it as “a form of discrimination or social prejudice against people with disabilities.”  I am not going to describe it any further, in case I descend into what a good friend of mine describes as the “aint it awful” stuff.

Instead I want to identify three (non-violent) weapons which can be used against it.

1. Humour

A light heart and a witty one liner go a long way. It takes a bit of practice but there is plenty of help out there, especially on the Internet. One of my favourite sources of humour is Crippen, disabled UK cartoonist.  So much that happens to us is funny, sometimes only in hindsight, admittedly, but developing a robust and “out there” sense of humour can help enormously when the going gets tough. Mocking prejudice can be fun! Disability humour is part of disability culture.

2.  Be loud proud and passionate


Being “out” and proud as a disabled person is powerful. And when a bit of action is required there’s nothing like some good old fashioned activism with other like-minded people. There’s safety in numbers and solidarity with other disabled people is personally powerful and takes away the feeling that everything bad is centred on me. Every little thing contributes to change, and taking action is very satisfying, and can be fun. Social media, such as Facebook, Twitter and blogs are useful tools. Know your rights, use them and learn from each other’s experience, A man who inspires me was brought up in an institution and began by leading action for better pay in a sheltered workshop. Now he is an international leader and has spoken at the UN.

3. Form strong alliances

Finding others who may not be disabled but who may share similar world views can be rewarding. Supporting each other on issues of mutual interest, forging strong and respectful relationships to create change may be hard work, but the results can really make a difference. Disabled people and the gay community teamed up in the early 90’s to make sure sexual orientation and disability in its widest sense were both included in the New Zealand Human Rights Act. Our hard work paid off and the new Act  was inclusive.

Call me Pollyanna, although I prefer a “cock-eyed optimist” as the song says – sorry about the pun, but if we don’t tackle disableism from a glass half full perspective it will just be too overwhelmingly hard.

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Filed under Disability Issues, Disability Rights, Inclusion

by | July 11, 2011 · 11:00 am

The eight-point media disability language guide

I love Radio New Zealand. I am a passionate fan of the great programmes they make and play. As a professional journalist I have contributed to several of their programmes over the years, and made an award winning documentary. But the one thing that makes me grit my teeth is the language some broadcasters use around disability. Of course they are no worse than any other media. Everyone does it.

I don’t like to whinge without offering a solution. So here is a little guide, not new I know, and I have written on the subject before in this blog Language disables us but a few simple pointers might be useful and help some people avoid annoying euphemisms such as “differently abled.” This term has never been generally used in New Zealand except by a few US inspired educators who have since learned the error of their ways.  We are not freaks with “special” powers. Using such language gets in the way of whatever else you as a journalist or broadcaster are trying to say.
In New Zealand the terms “disabled people” or “people with disabilities” are usually considered accurate and respectful for general use. Either will do. Some people want to be thought of as people first, rather than focusing on disability.

I prefer “disabled people” because it is shorter, easier to type, and reflects my identity. More importantly it explains an understanding that I have a vision impairment. Disability is what happens to me when the society I live in is designed to exclude people who have impairments, not usually intentionally. Some examples for me are the squitchy fonts people use on the essential bits of their business cards, the horrible Wellington bus signage, the paling of the Internet and the thoughtless use of language that diminishes my humanity.

There are a few points for journos and broadcasters who want to avoid the latter.

  1. “Disableist” language is like sexist and racist language and can have the same kind of negative impact on individuals and groups of people.
  2. Do use the terms disabled people or people with disabilities when talking or writing about us.
  3. Do use neutral language. A person has a condition, rather than suffering from it, they may use a wheelchair rather than being confined to it. Negatively loaded terms such as “the disabled” or “handicapped” are not neutral and are generally loathed.
  4. Do talk about a person’s impairment only if it is strictly relevant to the story.
  5. Do use language correctly – Use of the term schizophrenic when you mean you have a dilemma or feel torn about something is wrong. It means something quite different.
  6. Do use disability terminology in the right context, not as a term of abuse or insult.
  7. It is OK to refer to Deaf as Deaf, but culturally and linguistically Deaf are not hard of hearing.
  8. It is absolutely OK to ask if you are not sure, for example, I prefer, if it is necessary, to be referred to as “partially sighted” or “vision impaired” rather than “partially blind.” I am a positive person. Others may have their own preferences.

The language we use about others defines us more than them. It is not about being PC, simply about respecting the dignity of other people.

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Filed under Disability Issues, Disability Rights, Media, Miscellaneous

by | May 13, 2011 · 9:53 am

Engaging with disabled people 4

I thought I had finished this series but recent events prompted this additional post.

Since 1987 I have spent a great deal of time consulting and engaging with disabled people. It started with the Royal Commission on Social Policy in 1987 and continued with setting up Equal Employment Opportunities (EEO) networks in the public service, through Non- Governmental Organisations processes and government committees and working parties. In 2001 we launched the NZ Disability Strategy after a huge national round of consultation. Then it was the Human Rights Commission Inquiry into Accessible Land Transport, The Human Rights Action Plan, and all the processes around the development of the Convention on the rights of persons with Disabilities, (CRPD) and so on. I have taken part in both sides of the process, as a professional within the consulting organisation, and among those disabled people and disabled people’s organisations being consulted.

So I was a tad taken aback the other day when a well-meaning public servant seemed to be going over well-trodden ground by politely asking a gathering of the disability community – How do you want us to engage with you? It was not so much the question itself as what seemed to be the assumed newness of the exercise.

The response from some was fairly predictable. A deep sigh, a list of preparatory reading, a quick lesson in recent history and a brisk request that the process simply be handed over to disabled people along with a reminder of “Nothing about us without us”.

But the fault is not with the individual public servant, who is usually well meaning and wanting to be respectful in the face of an audience which can be prickly at best and downright curmudgeonly at worst. Public servants, like the rest of us, often have to work with tight time frames and budgets. The problem is a lack of institutionalised knowledge, and inflexible and unresponsive bureaucratic processes in organisations meant to be for the public good. The wheel gets reinvented again, an unproductive and frustrating exercise for everyone.

So I thought I would develop a wee guide to help the hapless public servant new to disability to forge a respectful relationship with disabled people. Here are a few ‘do’s’ and ‘don’ts’ to get you started.

  • Don’t expect to be spoon fed – People get a bit tired of the constant question and the expectation that disabled people will always be available and willing to volunteer to answer questions on your terms. They get a bit tired, grumpy and overloaded just as you do.
  • Do your homework. Check up on what is already known about engaging with disabled people in your organisation. What structures, networks and processes are already established? Ask your colleagues. Check out what your organisation has done in the past. What worked? What didn’t?
  • Do discover that many of the problems you want to know about have already been described to a high standard and at great length by disabled people. Read the latest information produced by disabled people. I personally recommend Disability in Aotearoa New Zealand – a report on the Human Rights of Disabled People in Aotearoa New Zealand, published in 2010 by the Convention Coalition, a coalition of disabled people’s organisations. But there are many more.
  • Do learn a bit about disabled people and their organisations, which may be quite different from their service providers. Most of them have web sites.
  • Don’t expect the Office for Disability issues (ODI) to be everything to everyone. There is lots of useful information about engaging with disabled people on their web site, but they were originally established to do policy work. Other organisations have responsibilities to disabled people too, and leaving everything to the ODI creates the ghetto disabled people are desperate to avoid.
  • Do read the CRPD and learn about your organisation’s responsibilities towards disabled people. One or two government organisations are beginning that journey.
  • Do use other information in the public arena, the census and disability survey information from Statistics New Zealand, the CRPD and the Disability Strategy. If you can’t find essential information in the public arena demand that it is collected. Read publications such as To have an Ordinary Life – I could write a whole reading list.
  • You might even find some useful information in my previous posts on this topic or at AccEase.

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Filed under Accessible Engagement, Disability Issues, Disability Rights, Information Accessibility, Media, Web Accessibility