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Do disabled people still count?

While recently completing my census online, (as a screen reader user I felt I should do this early in case I met with any access issues), I discovered that disability issues have once again become ‘health issues’.

What seems like a very long time ago now, myself and others battled the government of the day, and its attendant bureaucracy, long and hard to have disability included in the Census of Population and Dwellings. It had at that time been 80 years since disabled people had been counted and it was high time that we were counted again. Long story short, disabled people as a group were finally reinstated in the 1996 census. It has been extremely helpful to the disability sector to be able to lobby for greater access to goods and services, and community participation in general, since we have been able to quote the percentage of disabled people in New Zealand. This currently stands at one in four or 25%.

As a member of the officials group tasked with coming up with suitable questions for the disability section of the 1996 census, I was very vocal about the need to ensure that we frame the questions around barriers to participation and not around health issues.

Imagine my shock then to find the latest census announcing: “The questions that follow are about difficulties you may have doing certain activities because of a health problem.” The questions under this category are framed in a negative, deficit model manner. For example:

“Do you have difficulty seeing, even if wearing glasses?

Do you have difficulty hearing, even if using a hearing aid?

Do you have difficulty walking or climbing steps?

Do you have difficulty remembering or concentrating?

Do you have difficulty washing all over or dressing?

Do you have difficulty communicating using your usual language, for example understanding or being understood by others?”

For each of these you are then given a choice between: “no difficulty”, “some difficulty”, “a lot of difficulty” and “cannot do at all”.

The degree to which a person can see, hear, move quickly, remember or communicate only provides information about a very small aspect of someone’s life – and not even in a particularly scientific manner. I have no vision, and while this may have had an initial health etiology as a baby, being blind doesn’t affect my health in the slightest. In and of itself, blindness actually has little baring on my life. Similarly many Deaf would be appalled at the thought of their identity being viewed as a negative ‘health’ issue. In the words of the late Stella Young, “We are more disabled by the society that we live in than by our bodies and our diagnoses.”

In the latest Office for Disability Issues (ODI) newsletter, Director Brian Coffey encourages disabled New Zealanders to “please make sure you are counted in the 2018 census, on Tuesday 6 March 2018.” He concludes by quoting a saying said to be gaining momentum: “If I’m not counted, I don’t count”.

So are we, people disabled by a society which erects barrier after barrier to our participation, truly counted in the latest census?