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Kia ora

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Welcome to my blog. My interests are wide and it may take some time to write about all of them. You can expect posts about: cities (urban design, transport, etc), design, disability, eHealth, enterprise (both business and social), our environment, health policy, leading, music, New Zealand politics (@nzpol), science, screenculture, technology,  and the delights that bring joy to life.

We’ll start with a few items about disability that will be cross-posted from now onwards over at Public Address’s new Access blog. Proud to be part of it.

Great to have you along, and please do spread the word.

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disability

One in Four – NZ Disability Survey

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A focused Disability Survey has been conducted after each national Census since 1996. This is the only official source of data about disabled New Zealanders. The first data from the 2013 Disability Survey has been released, focusing on demographic details. Later releases will add detail about needs and barriers.

A Million

The headline finding is that there are now over 1 million disabled people in New Zealand. That’s 24% or about one in four of the total population.

If we understand disability as the interaction between how a person functions and how the world functions, there will obviously be a great variety of combinations. They will be affected by things like a person’s surroundings, life-stage and resources.

Age

The disability rate increases dramatically with age. The survey shows 59% of people aged 65+ are disabled,  compared with just 11% of under-15s and 27% of all adults.

Different age distributions also help explain variations of disabled population rates across different regions and ethnic groups.

Gender

Overall, disabled people reflect the gender split of the total population – 51% female and 49% male.

However 13% of boys are disabled compared with 8% of girls.

After age 15, the proportions are roughly similar but a greater number of women than men are disabled, partly because they tend to live longer.

Graph shows disabled males as a proprtion of males in broad age brackets.

disab2013_101-female

Impairment Type

The Disability Survey groups personal impairment into broader categories based on answers about activities people have difficulty doing. I have further combined some here. There are some fundamental problems with the way Statistics NZ understands disability and impairment, but this is all we have for now. This graph shows the prevalence of impairment types for disabled New Zealanders by age:

disab2013_402-imp-type

Impaired mobility affects 14% ( one in seven) of the whole NZ population.

Impaired mobility, hearing and agility affect a higher proportion of older people than children.

Impaired thinking, learning, mental health and speaking affect a higher proportion of children than older people.

Impaired mobility and agility affect more women than men. Impaired hearing affects more men than women (no surprise to some).

53% of disabled people have more than one type of impairment. Greedy, I know.

Internal Proportions

Updating my list from previous Disability Surveys,
out of every 9 disabled New Zealanders:

  • 5 have impaired mobility (getting around) = 567k.
  • 4 have impaired thinking, learning or remembering = 470k.
  • 3 have impaired hearing = 380k.
  • 3 have impaired agility (grabbing things, etc) = 324k.
  • 2 have impaired mental health = 242k.
  • 1 has impaired vision = 168k.
  • 1 has impaired speaking = 128k.

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disability

More Disabled New Zealanders

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1 ,062,000 faces. The 2013 round of the only government survey about disability shows disabled people’s proportion of New Zealand’s population is now 24%.

That’s about one in four. In the 1996 and 2001 surveys it was one in five. In 2006 it was one in six though Statistics NZ is wisely discounting that inexplicable outlier now.

The first set of information released from the 2013 Disability Survey focuses on population proportions. Later releases will add detail about needs.

Why more?

The department says the rise this time may be because of better surveying, more older people, and improving attitudes about disability.

The proportion of the New Zealand population in older age groups is growing, and people in these age groups are more likely to be disabled than younger adults or children.
However, population ageing does not account for all of the increase. People may be more willing to report their limitations as public perception of disability changes; methodological improvements to the survey could also be a contributing factor.

The influence of age

The disability rate increases dramatically with age. The 2013 Disabilty Survey shows 59% of people aged 65+ are disabled,  compared with just 11% of under-15s.

Different age distributions also help explain variations of disabled population rates across different regions and ethnic groups.

Impairment types

Updating my list from previous surveys, out of every 9 disabled New Zealanders:

  • 5 have impaired mobility (getting around) = 567k.
  • 4 have impaired thinking, learning or remembering = 470k.
  • 3 have impaired hearing = 380k.
  • 3 have impaired agility (grabbing things, etc) = 324k.
  • 2 have impaired mental health = 242k.
  • 1 has impaired vision = 168k.
  • 1 has impaired speaking = 128k.

53% of disabled people have more than one type of impairment. Greedy, I know.

Half the picture

Statistics NZ aren’t quite there yet in understanding disability:

For the 2013 Disability Survey, we defined a disability as: ‘an impairment which has a long-term limiting effect on a person’s ability to carry out day-to-day activities. Long-term means six months or longer and limiting effect means a restriction or lack of ability to perform.’

You’ll notice they are missing the whole ‘interaction with surroundings’ part of the model underpinning both the official NZ Disability Strategy and the UN Disability Convention. They’re actually only measuring impairment, though their analysis does not reflect that.

But then they’re hardly alone, and any information is better than none. People working with other population groups this size may be astonished to hear that this 5-yearly survey is the only one about disability conducted by our government, and that we have no cross-tabs into the rest of Statistics NZ’s $90m annual spend on public statistics. This is also the first survey in the series with de-prioritised ethnicity. Stats geeks will get what that shows.

Less than half the picture

Let’s also note in passing that Statistics NZ shares the ignorance of some other international agencies in adopting an inconsistent approach rooted in not understanding what disability is.

People were not considered to have a disability if an assistive device (such as glasses or crutches) eliminated their impairment.

Cured! So people who use hearing aids and spectacles don’t count as impaired (“a disability” = an impairment). However, people who use wheelchairs do count. Go figure.

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cities

Auckland CBD waterfront projects emerge

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As New Zealand enters another investment cycle after the 2008 global financial crisis, commercial projects centred on our biggest city’s gorgeous downtown waterfront begin to spring into public view.

As the astute Transport Blog notes, recently-announced projects involve trading public space for private investment.

Metro magazine editor Simon Wilson examines the implications of proposed cbd cultural/tourism projects and some of the local politics involved in decision-making about them.

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disability

Revealing Words

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Historically there have been many different ways of talking about disability and the people who experience it.

Understanding about disability varies, even amongst disabled people and disability-focused organisations. There’s not even clear agreement about what to call us.

However if you’re writing about disabled people, using any of these words suggests you’re making disabling assumptions that aren’t helping:

  • suffer, struggle
  • bound, confined
  • lets
  • despite
  • overcome
  • inspiring
  • brave
  • special

If you find yourself using any of these, ask how you’re picturing the person and their place in the situation:

  • Are you imagining how you might feel if you became them right now?
  • Is the person’s value solely in terms of what they teach others about ourselves?
  • Are they a helpless victim to you? Or are they a noble exception to that, due to their ‘pluck’?
  • How will other disabled people respond to reading your description?
  • Do you really need to delve into medical details or describe how someone became disabled? Is that actually relevant to your story? It might be interesting to reflect on your motivation or what you’ve been taught to ask.

Some specific outdated words are simply unacceptable in any circumstances except a list of words to avoid, eg: handicapped, cripple, spastic, retard. You get the picture.

What other words or phrases have you noticed are red flags?

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disability

Your Relationship With Disability

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It’s often useful to consider how we each relate to disability, so we understand better where one another are coming from . Think about which of these apply to you (may be more than one):

  • (A)  I am a disabled person.
  • (B)  I have a family member who is a disabled person.
  • (C) I am a parent of a disabled person.
  • (D)  I have a friend who is a disabled person.
  • (E)  I have a workmate who is a disabled person.
  • (F)  I do disability-related work.
  • (G)  I have studied disability.
  • (H)  I do not know much about disability but I’m interested.
  • (I)  Other – please describe.

Which of those fit for you? (no strings) And how does that shape your thinking?

This post is also at Public Address’s Access blog.

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disability

Disability Stakeholders

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Some types of people and organisations commonly come up when we discuss disability. My understanding of them flows from how I think about disability. There are other ways, which you are free to raise and discuss below. And let me know if I have missed anything.

To me, the main stakeholder types are:

  • Disabled people.
  • Parents and families of disabled people.
  • Disability change movements.
  • Organisations of disabled people.
  • Organisations who provide services for disabled people or families.
  • Agencies whose purpose relates to disability.

Disabled people are those of us who have impairments and experience disability.

However, if we understand disability as the interaction of personal impairment and social process then the experience of disability comes in different forms and intensity – and is not actually restricted to disabled people. Attempts to reassert primacy have resulted in phrases like ‘people living with disability’ and ‘people with direct experience of disability’. Having impairments and experiencing disability are both required to be a disabled person. If there is a simpler word for that, I’m all ears.

Parents and families of disabled people may experience the social process of disability quite strongly at times. However, there is a difference between being a disabled person and loving or living with one. Extra reliance on family for support can amplify the usual struggles most parents face letting their children take risks and live their own lives.

Disabled people and families are often spoken of together as the ‘disabled community‘. However, there are significant power differences and speaking on behalf of disabled family members has long been a source of tension.

Disability change movements are active groupings of people and organisations who are motivated by improving the world for disabled people and families, though often only in particular aspects or for specific subgroups of people. These are mostly powered by disabled people, families and organisations.

Coordination between movements, resources, skills and strategic planning for sustained action are  challenges. Disabled people and our organisations have much to learn from other social change movements.

Organisations of disabled people (‘DPOs’) are intended to represent the interests of disabled people, and to be comprised of them. The United Nations disability rights convention recognises DPOs as ‘civil society’ organisations with a special representative role. The main national DPOs in New Zealand serve distinct impairment-based populations and work together as the ‘Convention Coalition’ that has an official role in monitoring implementation on the Convention. DPOs include the Disabled Peoples Association (DPA), People First, the Deaf Association, and the Association of Blind Citizens (ABC).

Service providers deliver a variety of services focused on the immediate needs of disabled people and/or families, often focused on particular impairments.  These are the mostly non-profit organisations familiar to the public over decades, such as CCS, IHC,  the Foundation of the Blind and the National Foundation for the Deaf. Their role has often evolved to blur advocacy with service provision – another common source of tension. Some government departments are also significant contractors of or providers of services, as are District Health Boards.

Agencies regulate and support the workings of what is often called the ‘disability sector’*, but do not provide support services as such. Both central and local government contributes to this role.

* The disability sector is frequently mis-conceptualised to contain not only the service providers, DPOs and agencies, but also disabled people and families. This mashes together a variety of perspectives and needs and  does not recognise the different power, resources and mandates of stakeholders.

It also defines disabled people mainly as users of disability services, which is untrue for about half of us. Even then, this error reflects a curiously dependent and institutionalised understanding of our places as citizens and consumers.

By comparison, when someone says ‘education sector’ we do not usually think of students and their families but only of the people and organisations who work to deliver them an education. Discussing the ‘retail sector’ does not normally include its customers.

This post is also at Public Address’s Access blog.

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disability

Who Are Disabled New Zealanders?

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Disabled people are part of every community and grouping in New Zealand. However, most surveys do not ask about us, and we’re poorly understood for various reasons. Let’s start fixing that together.

How many

Official Census results every five years or so say disabled people are between 1/6th and 1/5th of all New Zealanders.

That’s 750 – 900 thousand people. More than you thought, right?

Proportions

More older people than younger people are disabled in some way. The impending surge in retiring ‘boomers’ is relevant, because about half of all over-65s are disabled.

Disability affects more boys than girls and more older women than older men, but matches our gender balance overall.

More Pakeha and Maori people are disabled than Pacific or Asian people – which might reflect immigration restrictions, or something else we don’t know about yet because nobody has studied it.

Disabled people tend to be poorer, less educated, and far less likely to be employed. That restricts a whole lot of options.

Impairment happens through birth, illness, accident and ageing. At what stage of our life it happens has a big impact, but is not recorded in most statistics. About half of disabled people have more than one form of impairment.

Out of every 9 disabled New Zealanders:

  • 5 have impaired mobility (getting around).
  • 3 have impaired hearing.
  • 3 have impaired thinking, understanding or remembering.
  • 3 have impaired agility (grabbing things, etc).
  • 1 has impaired vision.
  • 1 has impaired mental health.

How impaired?

It’s also a matter of degree:

  • Most people with impaired mobility do not use wheechairs. They may just be unsteady on their feet or have trouble climbing stairs or walking long distances. Only 1 in 10 mobility parking permit holders have wheelchairs – please think about that before you abuse the other 9.
  • Most people with impaired vision are not blind. They are more likely to need larger text and clearly-marked steps rather than braille or a guide dog.
  • Most people with impaired hearing are not part of the Deaf community who share New Zealand Sign Language. Their needs can be rather different.
  • Only about half of disabled people use disability support services, equipment or organisations.
  • Only 4% of disabled people live in institutions. Most of us live in our own places or share with others like everyone else does.
  • Many disabled people don’t think of ourselves as disabled most of the time. Only when we encounter disabling settings or circumstances.

Remember all of that when you’re looking for a ‘representative’ group. What would you like to know more about?

This post is also at Public Address’s new Access blog.

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leading

Clever Equations

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Owen Woodhouse, the architect of New Zealand’s world-leading accident compensation scheme, ACC, has died aged 97.

ACC ended the reign of lawyers. It brought certainty of relief for thousands of New Zealanders. In later years it has suffered a fair bit of tinkering as some governments have readied it for privatisation.

The scheme also displayed the morality of its founders. Here’s Sir Owen in a 2012 interview:

“The social responsibilities which underpin ACC ought never to be tested by clever equations, or brushed to one side by economic dogma. In the end, they depend on decent fellow feeling and the ideas and ideals that support it.”

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disability

Understanding Disability (1)

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Here’s something I have written before, and I will no doubt come back to and reflect on. It has been published in similar form as part of several public documents, and is here for you to draw on (see ‘Share This’ below) and discuss.

Disability combines personal experience and social process. It is the interaction between how the world functions and how people function.

Traditionally disability was seen as an individualised “health problem”, a matter of personal tragedy and neediness for the attention of medical and welfare authorities. By contrast, a modern understanding of disability also views it as a social process, much like poverty.

Aspects of our personal function used to be called “disabilities” and are now called “impairments”.

An impairment is an ongoing reduction, absence or socially-devalued difference of personal function. Impairment means a person may have difficulty doing some things in their daily life, like moving around, hearing, learning or socialising.

Those difficulties are often reduced by doing things differently or using forms of support including equipment and human services. Most disabled people are impaired in only certain aspects of daily living, and have other personal strengths.

Impairment is usually not something that can be “treated” or “cured” through health services, although rehabilitation services may be helpful for some people.

Impairment comes about in many ways, including birth, illness, accident and ageing – and it has always been a normal part of human life.

However, social attitudes play a large part. People function differently, but some differences tend to be socially valued, such as the abnormal physical function of athletes, while others are not valued, like using methods of communication other than speech. Human rights models are one way to understand that.

Impairment does not ’cause’ disability – any more than race causes racism.

A high degree of impairment (such as total blindness) does not necessarily correlate with a high degree of disability across different settings (like work, home, transport, communication, civic participation).

Disability is experienced when a person with impairments interacts with settings that have not anticipated diverse needs.

People are resourceful and adaptable, but there are limits to our ability to influence our surroundings. Often those most affected by barriers are least able to remove them.

Rather than seeking to “fix” people, it makes more sense to design and manage all settings so that they meet everyone’s needs, and to remove barriers that prevent people being able to contribute and participate on a fair footing.

This approach is reflected throughout the New Zealand Disability Strategy (2001) and in the New Zealand-influenced United Nations Convention on the Rights of Persons With Disabilities (2006).

The Convention’s Preamble says:

“…disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.”

The New Zealand Disability Strategy puts it like this:

“Disability is the process which happens when one group of people create barriers by designing a world only for their way of living, taking no account of the impairments other people have. Our society is built in a way that assumes that we can all move quickly from one side of the road to the other; that we can all see signs, read directions, hear announcements, reach buttons, have the strength to open heavy doors and have stable moods and perceptions.”

I’m interested in hearing how you understand and explain disability.

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Delicate wispy dandelion flower head against a pale background.
disability

Because We’re Worth It

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I am disabled. Here’s some of what I have realised over the last decade about that. I have been privileged to work with wise and committed colleagues and peers and I acknowledge all they taught me. Not coming from a background in disability policy, services or activism allowed me to add a different perspective.

Disability is what happens when your needs don’t match the world as it is right now. It’s that simple, and that complex.

Disability combines personal experience and social process. It is the interaction between how the world functions and how people function.

It’s way too easy to focus only on the individual, rather than what surrounds them, constrains them, enables them. We each have our own stories, but there are also bigger forces at play. Most of that is missing from educational and media coverage.

Nothing special

Impairment of our abilities is natural, and much just comes with age. Our walk and memory might falter, our senses become less sharp, even as our wisdom deepens(if we’re lucky). Some of us were born this way. Or our lives changed through illness or accident.

It’s mostly not something to be ‘prevented’ or ‘rehabilitated’. Disabled people have always been part of human history and despite the fantasies of eugenicists we always will be.

Adjusting

Society’s understanding about disability continues to evolve — yet it is consistently reported by disabled people as our single greatest barrier to work around. Other barriers occur when our needs aren’t taken into account.

People do whatever they can to adapt to their surroundings. We’ve all done it or seen it. But there are limits. It’s hard to magic-up smooth footpaths, larger print, or respectful service at the moment you need them. Taking your own wheelchair ramp or interpreter everywhere (just in case) isn’t practical. Putting up with poor assumptions and constantly being an unpaid teacher about disability is draining. Our parents and siblings and friends can experience that too.

Investing

Some needs are provided for without question because we’ve always done it, or society quietly regards them as ‘normal’, or because the ‘right’ sort of people are involved. For instance, senior business executives get dedicated personal support people but we ration those for disabled students. Making your own travel bookings is somehow a worse fate than missing the same chance at an education as your peers.

Some abnormalities are also irrationally applauded. Even though we no longer regularly run from savage predators, being freakishly fast can get you a medal. Being able to communicate with New Zealand’s rarest official language, not so much. Nothing fair or sensible about it. You can see why many disability activists take a human rights approach.

Seeds of change

Rather than trying to cure or ‘fix’ each person, let’s just make sure the settings we share work for everyone. Then we can all live to our potential and play our part in our families, our society and our economy. Our world faces some great challenges that require cunning, cooperation and tenacity to overcome. Disabled people offer all of that, hard-won from daily experience. We are also your neighbours, your family, your future. Fellow citizens. Fellow humans.

What we each bring is worth adjusting for, like we do for others – without challenge, without pity and without begging.

This post is also at Public Address’s new Access blog. Proud to be part of it.

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* Dandelion photo © 2014 Nora Leggs. source

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