Improving disability data and statistics in a post-monitoring age

By Christopher Watkins


Today, 3 December 2015, is the UN’s International Day of Persons with Disabilities (IDPwD), and rather than blogging about the impossibly broad theme of the day, which is ‘access and empowerment for people of all abilities’, I’ve taken it upon myself to ask how the second and least glamourous of three sub-themes, ‘Improving disability data and statistics’, sits with modern best practice on employee monitoring and ‘disclosure’.

And perhaps that is the best place to start – ‘disclosure’ – note the use of inverted commas. Following Kate Nash’s compelling work ‘Secrets and Big News’ last year[1], some argue that the language of ‘disclosure’ or ‘declaration’ is at risk of turning disability or ill-health into a ‘dirty secret’ or a piece of big news, rather than a perfectly ordinary part of the human experience.

Business Disability Forum. Marketing photos

At the same time, leading employers like Lloyds Banking Group (LBG), through their partnership with BDF Partner Microlink, have made their workplace adjustments process quicker, cheaper and more effective at improving productivity and reducing the costs of sickness absence by opening it up to all employees, regardless of whether they have described themselves as disabled to their manager or HR. A pleasing outcome of this approach has been a new kind of management information (MI), focussed on what really matters: the number of enabling workplace adjustments that have been made, and the return on investment for the business.

While approaches vary widely across different businesses and sectors (with monitoring remaining an essential part of carrying out the Public Sector Equality Duty for the UK public sector), a cursory analysis of some of the leading work taking place right now might suggest that we are, at least on disability, on the verge of entering a ‘post-monitoring age’.

To be blunt, those of us with disabilities – particularly when they are non-visible (the third sub-theme of IDPwD, incidentally) – don’t want to have to tell employers, governments or anyone else for that matter if there is no reason to do so. And I can understand why: my health and physicality is none of your business, and whether or not I would be considered disabled under the Equality Act makes no difference to that. The right to privacy, I might argue when in one of my more melodramatic moods, is also clearly laid out in Article 12 of the UN’s own Universal Declaration of Human Rights.

And I would be being inexcusably melodramatic. Why does the UN want to improve disability data and statistics? Because the lack of reliable and consistent data at the international level is a real barrier to inclusive development planning[2]. Similarly, in large businesses and public sector organisations, intelligently targeted MI (as opposed to data for data’s sake) can be invaluable in identifying organisational inefficiencies (e.g. adjustments being unnecessarily delayed because Health & Safety doesn’t talk to IT), unconscious biases or abnormalities that might help identify an opportunity to improve inclusion and business performance (e.g. by comparing performance or exit interview ratings for disabled employees against the company average).

So where does this leave us? A lazy analysis might shrug this off as a question of scale. Knowing whether an individual employee or customer has a disability is difficult to justify unless you are very clear about why you need to know and what you are going to do with the information. Knowing overall statistics on the number of disabled staff for your organisation and business is more palatable, particularly if this is anonymised and used only for strategic analysis. To go up a level again, statistics for use in sustainable / inclusive development planning on the intra-national level the UN is working on seem entirely sensible.

I would suggest, however, that we should not lose sight of the individual not wanting to share their personal information, because this is not a simple question of scale. Data for data’s sake is a dangerous game, and we would do well not to lose sight of the ‘why’ – that clear justification that is so starkly transparent on the individual level – why do you want to know?

I, for one, would love to see a world when disability inclusion has been improved to the extent that collecting disability data and statistics has become a pointless exercise. While on a global level we are still a very long way from that ideal, we would do well to remember that it is at this point that accurate and well-maintained data can become a barrier to true inclusion through an obsession with categorising an arbitrary ‘other’.




You can talk to Christopher at or Tweet him at @chrispydubbs

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