Have you all filled in your Census form then? I’m still looking balefully at mine, half complete, but I’ll get there.
The burd is as suspicious as the next conspiracy theorist of anything that collates hunners of information about us but the Census does matter. But I’m also mildly obsessed about the need for evidence based, or informed, policy making and service design and regularly fulminate about the lack of government data and statistics on basic key things. For example, we do not know how many disabled children there are in Scotland because no one has bothered to count them. How then can we determine how much money, what kind of professionals and what sort of support they might need as they grow up, other than by the time honoured tradition of officials scratching their foreheads and guessing?
So, the Census not only counts us but increasingly gathers useful information and data about our lives. Even as a history document it is useful to show how patterns and trends in demographics shift over the years and centuries. Doing this requires a more complicated form: as someone has already pointed out, people with learning disabilities or whose first language is not English will struggle to complete it and that needs to be resolved for next time.
Spare a thought, then, for the people at GRoS – General Registers of Scotland (or the equivalent in England, Wales and Northern Ireland) whose job it is to design the forms and questions. No easy task when there are lots of competing demands to be met. It takes them nearly the full ten years to get there and no doubt, they are already planning the next cycle before the ink was even dry on this one.
The burd was involved in one of GRoS’s myriad working groups as far back as 2003 to look at including suitable questions on disability and long term conditions. We didn’t make their job easy.
Every time they agreed to include representatives from one group or a particular type of condition or support need, someone else clamoured to be let in – on the lines that no one can ever speak for anyone else. Which has a point but must have been exasperating for the officials. Then, of course, the first few meetings were dominated by the debate over the medical and social model of disability. Should the questions ask about impairments and conditions or about support needs? It was an important, substantial debate but perhaps we should have done more work outside of the working group to discuss it and then agree a position.
At first, the officials were adamant about linking the nature of condition with the length of time: we were adamant about separating them out. Indeed, at one point, I seem to recall that we managed to persuade them to decouple ill health and disability altogether, but somehow, it came back together into one question. Which is a pity because this myth still needs to be debunked. Disability is not synonymous with ill health. For some, that is clearly true and many impairments can result in secondary conditions and health issues, which often limit life and day to day activities more than the original condition. But many others, providing they have the support they need, and the barriers to daily living are removed, enjoy the same kind of health as the rest of us.
I recall too that at one point, the list of impairments and conditions practically filled a page, in order to satisfy everyone’s aspirations that every thing – and more importantly, everybody – was included. At first, we ignored the very reasonable point that if someone was deafblind, that could be satisfied by the boxes on hearing and visual impairment both being completed. The same applies to multiple disabilities. And a big victory really was the separating out of learning disabilities from difficulties – at last that battle seems to be being won.
The existence of two questions covering nearly the same thing is still a bit of a missed opportunity. As usual, the temptation to resort to the agreed legal definition – a condition lasting twelve months or more – from the Disability Discrimination Act won out. Anything else proved too difficult, open to too broad an interpretation and too difficult to pin down which is why we are still stuck with a definition of disability in law that nobody is particularly comfortable with. But the second question asking if someone feels limited a lot or little is pointless. What does that matter? What meaningful information is that going to provide without some detail of how and why people are limited?
In any event, it strikes a victory for the medical model. For most disabled people, it is not their condition that limits them “a lot” or “a little” but non disabled people’s attitudes, the inaccessibility of services and built environments, and the failure of institutions, like the education system to support their needs so that they might have the same learning experience and therefore, life chances as their peers. That is what limits.
The 2011 Census is far from perfect – compromise is never easy. As the saying goes, you can please some of the people some of the time…. Ultimately it is not the officials who decide what goes in the Census form, but politicians who are required to pass a bill to enact changes to its content. Needless to say, every lobby known wanted questions included, so from that perspective the very fact that there are two, however flawed, around disability signals another minor victory. Everyone involved deserves credit for eventually getting round to working together and for staying the course. I’m sure the poor official at GRoS charged with establishing the next working group to improve these questions will want to remember this when he is five meetings in and no further forward.