I do feel that Issues of disclosure are made easier when guided by more nuanced definitions of disability. I was in a conversation about the matter of disclosure at a conference a while back, and we certainly got our wires crossed. The person I was talking to was using ‘disability’ to mean impairment. She believed that disabled people needed to be more open so that organisations could respond to their needs. I on the other hand was using ‘Disabled people’ to refer more specifically to the discrimination and oppression some face within our working cultures. Needless to say, it was a rather confusing conversation.
My own choice of words is guided by three things: my personal experience, disability studies as an academic discipline, and disability equality as a working knowledge drawing of the voices of the Disabled people’s movement. While I am aware I cannot speak for other people, I do believe I can build a professional knowledge base to reflect the interests of the Disabled population. I aim to speak on matters of shared interest through the frame of the named oppression imposed on Disabled people as a marginalised group – ableism. This does not mean I expect other Disabled people to agree, because issues of identity, community, network and group affiliation are matters of personal, individuals, and private choice.
Both personally and professionally I do like having separate words to talk about impairment, discrimination and ableism. The latter speaks of the specific characteristics of the disadvantage the whole disabled population face. In a public space, and more specifically as a Disability Equality Practitioner, talking about prejudice, discrimination and inequality are hugely important in terms of a political voice.
As a disability equality practitioner, I advise organisations to deal with issues of monitoring & accessibility and accommodation in very different ways in order to respect individual choice while acknowledging group affiliation.
Personally, I’ve had very mixed reactions to disclosure. It’s not that people are not initially sympathetic to the sharing of a hidden aspect of impairment, but sharing is a huge leap in trust, therefore I’m often hurt when people I have trusted then dismiss the added effort I make and the barriers I overcome within seconds. I have noticed that while many overestimate my capacity to keep up, a few will completely fail to understand the extra effort needed to achieve any degree of success.
As for a public conversation about disability, while I see the importance of ticking a box to indicate the ableism I face, in the years of my research I have become less convinced that my five impairments need to be a matter of public concern. As an educated guess, I would argue that it is fairly easy to work out how many Disabled people can be found within any group [2 in 10]; and a breakdown in impairment category is also easy to work out if you take time to look. Therefore professionals do not need to identify who has what, in order to work on access, language and culture.
Evidence exists regarding the number of disabled people in any population, therefore if less than 10 % of any group are disclosing that they identify as Disabled then the organisation has more than 2 problems. Firstly, if there are no/few Disabled people in the organisation there’s probably a cultural issue linked to institutional discrimination [access, recruitment, retention etc]. Secondly, if workers or customers don’t feel able to speak up about the accommodations they are entitled to the organisation probably has an issue of trust.
Furthermore, the way disability is treated as a rare and individual problem more generally in conversation contributes to the problem. Indeed, while it seems impairments are viewed as a matter of public interest, the invasion of privacy associated with this assumption fuels some of the prejudice imposed on disabled individuals. Don’t get me wrong context matters, if a colleague is kind enough to ask how my impairments affect me in a conversation about reasonable adjustments, I really appreciate it. However, I tire of being stopped in the street by strangers and asked ‘what’s wrong with you?’.
I’m sure people don’t mean to be unkind, but they’re no doubt acting on the stereotype - if unintentionally - that Disabled people are turnips to be treated as infants. Way deep in their assumptions, not in their thinking, is a belief, is the idea that they know best what Disabled people need. This hidden aspect of infantilisation, not only allows a prying into private worlds, but a right to ignore discrimination they refuse to consider. Both assumptions lead to ways of working that often deny reasonable adjustments in ways that compromise ethical values.
The point, for me, isn’t that ‘impairment’ is a bad word in a way that ‘Disabled’ is not. The real issue with disclosure is that it relies on the disabled person to trust the organisation’s understanding with regard to prejudice, barriers and discrimination. The onus is therefore on disabled people to advocate for fairness, more often than not by having to reveal far more private information than is expected of others. There is a far greater public/private articulation to be stated for issues of identity to be respected. Only 3 organisations I’ve worked with so far [in 30yrs] make the distinction between impairment and ableism on their websites and in their documentation. This lack of articulation is a klaxon to me, as it often indicates how fairly I’m going to be treated further down the line.
Nearly 2 decades after the Disability Discrimination Act came into force, legislation still hasn't addressed its legitimacy. By their own admission, the professionals I have delivered disability equality to have said they had no way of guessing the implications of their lack of understanding regarding these matters. Many admit to being surprised to learn that it was up to them to ask about reasonable adjustments, while it wasn’t up to them to reinvent inclusive practice on behalf of the disabled population. The legitimacy of their storytelling rested on the leadership of Disabled activists - the ideas of the Disabled people’s movement - a civil rights group with definable interests.
In a dawning age of anti-ism, where acting to address discrimination is as important as acknowledging its existence, the words we use need more than ever to express privilege and disadvantage in order to have legitimacy. Where paid folk could decide how many shared their experience, many will now do their homework to use words intentionally chosen to reflect the political voice of marginalised groups.
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